Gluten-Free Graduation Party Guide

Your soon-to-be high school or college graduate can see the light at the end of the tunnel by now. In just weeks he or she will be marching to “Pomp and Circumstance” and receiving a hard-earned diploma. So now is the time to start preparing for that gluten-free graduation party.

Lorae Raeder’s daughter Miranda, who has gluten sensitivity, graduated from high school in 2015. Raeder, who’s from the Southern Tier region of New York, said she didn’t know where to begin when it came to planning a party.

“Throwing a gluten-free graduation party scares me because I want the whole menu to be gluten free,” Raeder said. “The last thing I want to do is be the ‘food police’ with the honoree, my daughter, at a party being thrown in her honor.”

There are a lot of considerations when you plan a graduation party: cost, access to gluten-free food in your area, caterers’ gluten-free training, venues and your time and resources.

Do it yourself

A home-cooked meal is a popular option for graduation parties. You know everything will be gluten free, and it is probably the most budget-friendly choice. But it is also the most time consuming. Food preparation before the party with shopping, cooking, freezing and reheating—not to mention house cleaning—can take days or weeks.

And during the party you’re also in charge of replenishing food and making sure the hot and cold foods stay at safe temperatures.

Easy at-home gluten-free menu options include grilled steak, chicken or kabobs. A taco bar with corn shells or a baked potato bar are not only gluten free but can easily include vegetarian options. 

Check out our gluten-free recipes here.

Call the caterer

Nate Benkofske, who was diagnosed with celiac disease as a toddler, will graduated from high school in Minnesota in 2015. His party menu included assorted appetizers, catered food from Chipotle Mexican Grill, a specially made gluten-free cake for him and a regular cake for the other attendees.

“I know I can’t make all of the food myself because of time,” his mom, Lynda, said. “Nate loves Chipotle so it was an easy decision.”

Chipotle Mexican Grill is one of the most popular fast-casual restaurant chains in the country. Everything on the menu is gluten free except the flour tortillas. “While we don’t have a [special] gluten-free menu, there are plenty of options for people who maintain gluten-free diets. You can certainly order only items that are gluten free,” said Chris Arnold, communications director for Chipotle.

For his part, Benkofske had a laid-back attitude about what was served at his party. “I don’t dwell on the fact that just because I need to eat gluten free, that everyone at the party needs to eat gluten free. There is so much more to life than food,” he said.

Jennifer North, vice president of the National Foundation for Celiac Awareness, also turned to a caterer when her daughter Molly graduated from college several years ago. But she wanted everything served at the party to be gluten free to avoid cross-contamination for her daughter and 7-year-old niece, both of whom have celiac disease.

North is acutely aware of the complexity of managing gluten-free food in restaurants because the NFCA has a gluten-free education program for restaurants.

“I know what can happen when restaurants get busy and things get rushed,” North said. She tried to reduce the chance for error by asking the caterer to make her gluten-free order first thing in the morning. Then she planned to reheat it later for the party.

But the caterer insisted the meal could be made safely later in the day, and the food would be better if it arrived fresh and hot.

North finally agreed, but she was not home when the food was delivered and it turned out one dish mistakenly contained gluten. Unfortunately North’s niece had already eaten some of it by the time the error was noticed.  

North said she learned a valuable lesson. While she would order catered food again, she would stick to her original plan to have the food made and delivered at the start of the day.

Read Questions to Ask Before Hiring a Gluten-Free Caterer. 

 “I would follow my instinct to have them make the food when it is not so busy,” she said. And she would make sure she was there when the food arrived to double check the order.

If you are thinking of having your child’s graduation party catered, make sure the chef understands your gluten-free needs, including preparing the food in a way that prevents cross-contamination. Go over the menu thoroughly and ask questions about ingredients and food handling. On the day of the party, review all the food one more time to make sure your directions are followed.

Truck in the food

Food trucks are a growing trend, and many are available for on-site catering. You might be surprised to find that food trucks often offer cuisines that are naturally gluten free.

Bonnie Handke of Mahtomedi, Minnesota, hired the Tot Boss food truck for her daughter’s high school graduation party in 2014. Handke is also gluten sensitive and had vegan and vegetarian needs in the family.

“I liked the food truck option because the food was cooked to order, and the individual could specify what they wanted. This was so simple and there was no mess in the kitchen and no leftovers you get tired of,” she said.

Dan Docken of Tot Boss, based in Maplewood, Minnesota, has a niece with celiac disease and understands the gluten-free diet. While his regular menu, filled with what he describes as “tater tot concoctions,” has a few gluten-containing items, nearly everything is gluten free. Customers can request a completely gluten-free menu for a private party.

Easy cleanup is another plus. “One customer told me the mess just drives away at the end of the party,” Docken said.

Party prep

Although hiring a caterer or food truck will likely cost more, it will save a lot of time and effort.

Laura Ursini Marroquin, community relations and project manager for the Rib Company in Costa Mesa and Long Beach, California, began serving gluten-free options at the family-owned BBQ restaurants 12 years ago when her son was diagnosed with autism. “I couldn’t take my son to eat out at our own restaurant,” she said. Now the restaurant has many gluten-free menu items.

Based on her experience in the restaurant business, Marroquin said a caterer typically needs at least two weeks to plan and execute an order. But you should start planning even further ahead if you have a specific restaurant or food truck in mind.             

Marroquin said you should specifically tell the caterer that getting safe gluten-free food is the most important consideration to you. Make sure the caterer really understands gluten-free foods and preparation.  

“Ask about contamination in the fryer and special cooking techniques,” Marroquin said. “When we have a client who is actively asking those questions, we are more on top of those cooks creating the gluten-free meal.”

Docken recommends visiting a food truck and asking about truck cleaning procedures, noting that you should confirm that there will be no gluten-containing items in the truck during the party to eliminate any chance of contamination.

What about the cake?

A cake, complete with school colors and sometimes even a picture of the graduate, is often the centerpiece dessert at graduation parties. There are many bakeries, some exclusively gluten-free, that create gluten-free cakes for graduations, as well as other events.  

Click here for our list of gluten-free bakeries in the U.S.

If you have one in your area, be sure to put in your order far enough in advance. Some bakeries also offer online ordering. The sugar or icing sheets often used to put photographs on cakes are made from a layer of frosting and are usually gluten free.

It’s also easy to make a homemade cake using one of the many gluten-free mixes or recipes that are readily available. You may want to experiment with making a larger cake than usual if you are planning a big party. Cooking times will vary, and you want to be sure your cake is baked all the way through on the big day. A gluten-free sundae bar or a selection of gluten-free cookies and brownies are also popular options. 

Find gluten-free dessert recipes here.

In the end, it is important to consider what you realistically can do and what your child wants when planning a graduation party. Ask your graduate if he or she wants an exclusively gluten-free party. What kind of food does your child prefer? Maybe your graduate will surprise you, forgo the party, and ask to use the money for a plane ticket to backpack through Europe for the summer instead. It could happen.

Don’t Get Insomnia From Sleepover Worry

The fun and excitement of a good old-fashioned sleepover never seems to go out of style. Between staying up late, watching movies or playing video games, talking, taking pictures and eating all kinds of food, what’s not to like? Children’s sleepovers are a rite of passage, and the upcoming spring break is a popular time for youngsters to spend the night away from home.

Usually parents are concerned their child might not make it through the sleepover and come home in the middle of the night. But for parents with a gluten-free child, that first sleepover away from home can lead to a whole new set of worries.

Sometimes parents of gluten-free kids put the first sleepover off as long as possible. We don’t want our kids to get sick from accidental gluten ingestion. We may feel we are burdening the host parent with gluten-free demands, such as worrying about cross-contamination and making sure to buy the right brand and flavor of chips or ice cream.

However, we all know that at some point we need to let go and finally say “yes” when our child asks to spend the night at a friend’s house. Here are some tips to prepare your child, the hosts and yourselves for the big overnight outing.

The first sleepover

“Aurora and her friend came running into the house, as 8-year-olds do, saying ‘Mommy, can I please go to [my friend’s] slumber party [for her birthday] on Saturday,’” Elizabeth Roach of Eagan, Minnesota, recalls about her daughter’s excitement about her first sleepover a few months ago. Aurora was diagnosed with celiac disease three years ago, and Roach had many concerns about the overnight adventure. “They both looked at me with those big, innocent eyes full of excitement. I couldn’t say no,” she explains.

I, too, remember those days and the looks from the kids who desperately want to stay over at a friend’s house. It is hard to say “no.”

Teagan Ott, a 10-year-old from Saint Paul, Minnesota, has both celiac disease and Type 1 diabetes, which adds another layer of complexity. “Teagan has to give herself insulin for any carbohydrates she eats. So knowing exactly how much she eats is super important,” says Michelle Ott, Teagan’s mom. If Teagan doesn’t get enough insulin or gets too much, her blood glucose level could be too high or too low and lead to serious consequences, Ott explains.

Still Teagan had her first sleepover at the age of 9. Concerns about her daughter managing two conditions dependent on diet “have led to sleepless nights for us when she is at a sleepover,” her mom says.

Preparation and communication

Managing expectations of everyone involved in the slumber party is an important first step. “I told Aurora and her friend that I would have to speak to her mom because Aurora has to have special food,” Roach recalls. The two moms discussed Aurora’s celiac disease, gluten-free diet and cross-contamination.

Roach was nervous because she wasn’t sure if the mom would really get the importance of the gluten-free diet. But it turns out, she did. “[The other mom] was just as interested in keeping Aurora safe as I was. It made me a little bit more comfortable with the whole thing,” she says.

After discussing the party, the moms agreed Roach would make gluten-free birthday cupcakes for all of the kids. “I also sent along frosting and a dozen different types of fun gluten-free sprinkles and decorations for each girl to top her cupcake with,” Roach says. “They had a decorating contest, and no one knew the cupcakes were gluten free.”

When Teagan had her sleepover, Ott sent the host parents instructions for dealing with Type 1 diabetes and list of a gluten-free foods. She also asked the parents what they were having for dinner, snack and breakfast.

“I sent the gluten-free equivalent and labeled the number of carbs on the foods when I could,” Ott says. Teagan’s parents also require her to keep in contact with them when she tests her blood glucose, including right before bed. “I don’t like it when I have to text my parents,” Teagan says. But her parents say this is non-negotiable.

Looking back on it, Ott says she didn’t need to be as detailed with instructions for the parents. A text or call from them would have been just fine, she realized. She says labeling the food does seem to help, however.

Whatever you work out with the host parents, fill your child in on the plan. This can help manage expectations at the sleepover and reduce any anxiety, even if your child does not seem to be worried.

Both Aurora and Teagan had their first sleepovers with families they knew pretty well. It’s a little scarier for parents when the child is going to a new friend’s house. In that case, you might need to have a more thorough discussion about your child’s dietary needs. And sending along gluten-free snacks and a breakfast option will make things easier for everyone.

It’s also a good idea to try having sleepovers at your house first. You will get a feel for how they go, what children like to do and what kinds of foods they like. This may better equip you for when you send your child elsewhere for the first time.

Sometimes children head to the friend’s house before dinner, which is often pizza, tacos, burgers or another kid-friendly, but not necessarily gluten-free, choice. If you can’t work out the details for making sure your child can eat dinner safely, you can send him or her over after dinner. But I would only make this choice if it was absolutely necessary, since it could result in your child feeling less a part of the entire sleepover experience.

Even now, my 17-year-old daughter Emma, who has celiac disease, sleeps over at her friends’ houses. By the time she was in middle school, she was deciding what food she was going to take along. She always grabbed some cereal from the pantry for breakfast and packed a bag of chips. As she has gotten older, she has simplified this process even more. Now she just takes a bag of microwave popcorn and comes home in the morning to eat breakfast.

Best-laid plans

Parents do need to prepare gluten-free children for the possibility that things won’t go as planned.

For example the host parents might have said they would take the children to a pizza place that has gluten-free pizza but end up going somewhere else that’s not as accommodating. The snack the parent thought was gluten free might not be, or another child might have brought an unexpected treat for everyone that’s not gluten free.

“I recommend having a conversation with your son or daughter [so he or she knows] it is OK to say ‘no thank you’ to something they should not eat or are unsure about,” Ott says. You can discuss the risk that if they eat something with gluten they could get sick and have to come home, something no child wants to have to do.

Sometimes a phone call from the host parent can help straighten things out if they are not going as planned, though this is probably best used when a child is young and won’t be embarrassed. You have to trust older children to handle this kind of situation on their own by simply telling a host parent when they can’t have something.

You might run into a parent who is reluctant to invite your child to a sleepover because of the gluten-free diet. The best thing you can do is assure the parent that your child will come prepared with safe food.

If you communicate that you and your child are comfortable with the plan, the parents will likely be more comfortable, too. At the other end of the spectrum are parents who really go out of their way to make your child feel welcome and included, making sure to get gluten-free foods and taking care to prepare them safely. These parents are always appreciated.

Ultimately communication is the key ingredient to making a sleepover successful for your child and the parents playing host. Once all of the food questions are answered, the kids can focus on being up all night and having fun. GF

Amy Leger is the family editor of Gluten-Free Living. She blogs about the gluten-free lifestyle at thesavyceliac.com.

Remembering Life with Bread, A conversation with Author Paul Graham

A few short years ago, Paul Graham, associate professor of English at St. Lawrence University in Canton, New York, likely never thought he would be writing a book about being diagnosed with celiac disease and losing something that, it turns out, was very precious to him: gluten.

Graham was diagnosed with celiac disease in December 2012, and from there he started accumulating experiences, emotions and frustrations that have been put together for In Memory of Bread: A Memoir. His experiences are not unlike many of our own: being very ill, getting misdiagnosed, finally getting diagnosed and then spending a lot of time trying to figure out how to make our favorite foods gluten free.

Paul Graham
Paul Graham

But the book is more than a “woe is me” tale. Gluten-Free Living sat down with Graham to talk about why he wrote the book, his quest to find the perfect gluten-free bread (and beer), how going gluten free improved his marriage, and why this diagnosis is particularly difficult for men.  

Amy Leger: So why write this book?

Paul Graham: I am a literary writer, I am an essayist. What that means is, I like to go at a question or a problem from several different angles. In addition to raising awareness about celiac disease through my own experience, I wanted to explore culinary traditions that a person leaves behind when they forsake those grains that have been so important for the last 10,000 years or so of western culture—like wheat and barley. I also wanted to explore the traditions that a person who begins eating replacements for wheat and barley joins. I also wanted to break down the research that might explain the rise in celiac disease diagnoses, what is causing it, and why it’s so complicated.

AL: In the book you talk about the history of celiac disease. But this is your story. Why delve into history when there are other books that do that?

PG: I think it was important to me, as a person who has celiac, to be able to place myself in a historical context and understand that what I was going through was actually part of a really long medical mystery. That was interesting to me. At the same time, and this is me getting “English professory” on you, when you take that history and put it in the context of the story that is emotional, engrossing and involving, your readers are more likely to sit up and take notice about what it is you are trying to tell them and what it means.

I was interested in telling the story of this particular autoimmune disorder. But I think for someone who has just been knocked sideways with this diagnosis, knowing that people have been grappling with this for a millennium actually can be maybe a little bit comforting. I hope it is.

AL: One of the over-arching themes in the book is the quest to find the perfect gluten-free bread. Do you think the perfect gluten-free bread is on the horizon?

PG: I do. I think that people are paying very close attention to what other bakers are doing and companies are doing and they are learning from their mistakes and their successes. Many privately owned gluten-free bakers are making bread that is really quite good. People who live near small-scale, artisanal gluten-free bakers who are working with good science behind them are going to be able to get those breads or order mixes. The issue I think a lot of them are telling me is that it is very difficult to do it to scale. To crank out a thousand of them and ship out doesn’t work well. There is a lot of momentum out there. After talking with all of these bakers, it is really good to know so many people are out there trying to beat the game. I think it speaks to the power that bread has over us, and the fact that there is an ideal out there and that you can come close and sometimes close isn’t good enough. And I think it is a testament to our innovativeness in the kitchen and our spirit and the way that we’ll always be trying something.

AL: I loved how you described your first time baking bread: “We hovered over it like an accident scene for a few seconds and then pitched it, still warm, into the trash.” I can’t tell you how many times we gluten-free bakers have done this.  

PG: Those scenes were fun and stressful for me to write. One thing I wasn’t prepared for was the degree of honesty it would take to write it the way I wanted to. That invariably meant saying that someone’s recipe or product wasn’t good enough. Bread is such a basic food, it really brings people together in this spirit of excitement and joy, and to pull something out of the oven that smelled so promising and then you dump it out of the baking tin and it just kind of disintegrates in front of your eyes. You feel like you’ve been ripped off. You’ve smelled it for the last hour and think, OK, that’s going to be great, and it’s not. We had a lot like that.

AL:  You mentioned that cooking gluten-free food forced you to become a better cook. Are you grateful for it?

PG: I have become grateful for it. It is only in the process of talking about this book that I have come to see how having to leave behind a lot of western culinary traditions, ingredients, entrees, nudged me out of my comfort zone and made me explore cuisines that I probably never would have explored if the need hadn’t presented itself. I love Thai cooking right now. Same with Indian and Mexican—if you are willing to embrace the challenge, you can expand your cooking horizons.

AL: Those kinds of foods are easier to make gluten free, aren’t they?

PG: Absolutely. You’re not making gluten-free adjustments for the recipe at all. Wheat doesn’t grow in some of these places. Wheat isn’t a part of the Thai culture. It has never been a part of the Vietnamese culture.

When you make these foods, you are in the heart of the tradition, and it is safe for you if you don’t have other intolerances or allergies. There are cuisines from all over the world we don’t experience because we are such creatures of habit. This sort of forces you to overhaul your diet.

AL: Your story on the final gluten binge before going gluten free is something many people experience. What did that binge do for you—besides make you sick?  

PG: It was ceremonial. It was important to me on some level that I turned away on my own terms. On the other hand, I was also pretty weak and exhausted, and my brain was floating like 3 feet above the rest of me because I was so anemic. I had a rough path to diagnosis. I had been thinking about that sandwich the entire time when I was sick, it was the mixture of flavors that I wanted. It was comfort and bar food. It was cheap food, and I just had to have it. And my wife didn’t find out that I had eaten it until she read the book.

AL:  How did that go over?

PG: She just kind of looked and me and said, “OK, I get it.” And we never talked about it again. She would have really been upset with me, but at the same time she would have understood. If there is a regret I do have, it’s that I didn’t tell her about it so she could go out and do the same thing herself. She went gluten free with me. As for the Reuben, I know people who have done it with donuts and pizza. It’s an end-of-the-world scenario.

AL:  Was that a hard story for you to tell?

PG: I knew I had to tell it, to admit my own weaknesses and honestly explore this experience and what it meant. People who know me well might have been a little surprised by it, but not that surprised.

AL: As you mentioned, your wife went gluten free with you. Has that experience had an impact on your marriage?

PG: It absolutely has. I think there is a way you could think about this whole book as being about partnership and subtly about marriage. She did it out of her own free will. She did it because she loved me and wanted me to be safe. I can honestly say, that is the most generous and nicest thing anyone has ever done for me. People have asked if I would be able to do it for her. The answer is yes. It has made us closer. First of all, because I have never been as sick as I was when she saw me in the hospital with this. But also because we went through this whole journey together. We discovered all these things that were awful together and all these things that were wonderful together. It couldn’t help but change our relationship.

AL: I know many people with celiac who are afraid to eat because of how sick they could get…have you had that experience?  

PG: All the time, I don’t think it’s something you get good at. People who have this intolerance or autoimmune disorder, they know just how much of an extension of trust it is to have someone else prepare your food for you. Even if you have ordered a dish that is inherently gluten free, you don’t know what else has been on the cutting board or on the flat top or on the knives. It can be paralyzing.

How have I dealt with it? I have a small circle of trust. There are a number of restaurants where I have not had bad experiences no matter how many times I have gone there, so I tend to go back to those places.

The hardest part is seeing the full menu and knowing you can have only two or three options. It disrupts the story a restaurant is trying to create. You go to a restaurant to forget who you are on some level. Maybe you want go out and be fancier or shabbier, or you want to go back to childhood again. But anyone with celiac disease or another food-related concern, we walk into a restaurant and we know exactly who we are. That’s tough.

AL: Do you remember the time where you turned a corner and said, “I’m getting better, my situation is getting better. I can do this.”

PG: There were a lot of little moments early on as my body relearned to tolerate things it had been reacting to. For a little while I couldn’t handle dairy, meat and fish. Every time I successfully ate something off that list, I knew I was getting better. But in the book, the moment I knew I was going to be OK was an evening when I was cooking. The iPod was playing and all of a sudden music sounded good to me again. It was the Miles Davis Quintet doing their rendition of “Bye Bye Blackbird.” It was the first time I actually heard it. I felt like something in my head had clarified. For me, I had the gastrointestinal trouble and joint pain, but the thing I could not tolerate is the way it clouded my thinking. I honestly felt in that moment that something had changed and a fog started to lift.

It was not long after that I began running again. That was important too. That was
another one of those strange gifts of celiac disease for me. It has taught me to listen to my body more closely than I have ever listened to it before. I think it comes from that experience of being so severely surprised. I had never been sick before, I had never been in the hospital for anything other than stitches. To be admitted for several days and not know what is wrong, you can’t say to yourself, “I’m never going to go through this again,” because you don’t have that kind of say over your health, things can just come over you. What I decided was I am not going to be surprised again. Celiac disease made me a runner.

AL:  You were home-brewing beer before your diagnosis. But since then, you’ve tried to find a great gluten-free beer. How is that going?

PG: It’s complicated. It started out really bad. I have found a really good gluten-free beer called Glutenberg, brewed in Montreal.

Where you get tricky is when you talk about gluten-reduced beers like Omission. This is a really hotly contested area. Some people say it’s bad for you and we don’t know if ELISA [enzyme-linked immunosorbent assay] readings are valid; others say it is under 10 ppm, it has to be OK. This is a genie that has been let out of the bottle. Even I proceed with caution there. I lean heavily on true gluten-free beer. I am making my own hard cider, and I’m dry hopping it too. Last September [2015], my friend and I hand pressed 10 gallons of apple juice at his hobby farm. We mixed in some pear and crab apples. I put hops in it and let it sit for six months, and it’s really good! So I’m still brewing in a sense, you could say.

AL:  You talk a lot in the book about beer and bread and the losses that go with that. You sound like you’re grieving. I think many people go through that.

PG: Actually, an early version of the book, the editor asked if I wanted to peg the book with the stages of grief. Ultimately, we decided not to do that. But I still think something of that logic and that psychological process is underpinning the book.

I grew up with the good fortune that I
always fit in. I was never different from anyone else in any way. Things had largely gone my way, in the sense that I graduated from college and went to graduate school and got a job. I have had my disappointments and losses like anyone, but I had never been socially different. I didn’t have to think about what I did or didn’t eat. And that was what celiac disease did, it made me different from everybody else. It is still that way. I think a lot of that tone of grief probably comes from that.

AL: I bring it up because you mention in your book being angry at the one-year
anniversary of your diagnosis. I wondered if you were still grieving.

PG: Yes and no. I still play competitive summer fast pitch softball. In fact, recently I forgot to throw a gluten-free beer into a cooler for myself and after the game everyone was gathering. I was 40 minutes from home and I had a water bottle. So that tradition bit me just a little bit. But for the most part, I’m not over it but I am pretty well reconciled to it. I think that is a stage a lot of us reach. I’m also surrounded by friends and family who (A) don’t remind me how good their eating is and (B) eat like I eat when we get together. That’s a great thing.

AL: Describe the difficulties about being a man with this disease. Does it feel like it impacts your masculinity?

PG: Yes. It definitely does. I think the two genders experience getting this diagnosis differently. There is kind of a “bro code” you could call it—the guys all going out and getting pizza and beer after the game. I had a conversation with one of my friends and he asked, “Can you have wings? Wings don’t have any bread crumbs on them.” And I asked, what’s been in the fryer?  He said, “Aw, you have to think about what’s been in the fryer?” And the way he said it, it was like, “Come on, you’re being such a wimp about this.”

I feel it differently when I am around a group of guys as opposed to couples or a mixed party of friends and acquaintances. I haven’t done it, but I’m more tempted to just order fries (even if they have gone in the fryer). I’m tempted to take my chances so I can just be doing what everyone else is doing.

AL:  Give us three tips for people who have a new gluten-free diagnosis.

PG: Tip No. 1, get a feel for what it means, how it feels and be comfortable with the gluten-free diet in your own house before you venture out into restaurants where (A) there will be threats wherever you look and (B) you will be confronted by all these things you can’t eat. I hunkered down for a good long time. It is really hard to tell whether you are getting healthy if you are going out to restaurants and getting cross-contaminated food.

My next point: This diagnosis requires a lot of patience. You’re going to have to get used to the fact that there are days where you make a mistake or someone makes one for you, and you are going to wake up the next day and feel like crap. When this first happened to me I thought, am I regressing? Do I have refractory celiac disease? I panicked. I just had to be patient.

My last piece of advice, get some good cookbooks from places that don’t grow wheat. Go to a used bookstore or garage sales to get used cookbooks. Become a student of Asian, Mexican, Greek cuisine—figure it out and dedicate yourself to it. It will serve you well in the long run. Life will get delicious again. The possibilities will open up. You will be a better cook, you can start doing fusion things. People will want to come to your house for dinner. That’s how you know you’ve crossed over. GF

Amy Leger is the family editor for Gluten-Free Living. Her website is thesavvyceliac.com. She lives in Colorado with her husband and two daughters.

Hosting a gluten-free holiday meal

The holiday season is upon us. If you are hosting a holiday meal, as I will be, you are probably planning your menu and listing out all the food you are going to need. At least in my case, the No. 1 goal becomes not ruining this festive feast by way of burning, drying out, undercooking or some other culinary crime I could commit. Then add on the extra challenge of serving a gluten-free holiday meal that satisfies everyone! Can you tell I’m not the most confident cook?

With several successful gluten-free holidays in my rearview mirror, I don’t worry as much anymore, and I still love hosting them. I have always wanted my gluten-free daughter to have a worry-free, gluten-free holiday meal. By hosting the meal, I could ensure it was completely gluten free. So what can you do to manage the meal, your guests and their expectations, especially if you’re hosting for the first time? It sounds like a lot, but you can do it—and even reduce your stress level in the kitchen in the process.

benefits of hosting

Hospitality_Tips_Table_Angela_Sackett_010For me, the array of aromas swirling around the kitchen early on Thanksgiving morning signals the start of the holiday season. They feel completely inappropriate for the time of day, but perfect for the time of year. Cornbread—our Thanksgiving bread of choice and easy to make gluten free—is fresh out of the oven, I am finishing up the gluten-free wild rice dressing and beginning to prepare the turkey for the oven. The joy of cooking this meal in a manner that fits everyone’s traditions while eliminating gluten and anxiety about cross-contamination actually lowers my angst over preparing the seasonal spread.

Jessica Murray of Minneapolis hosted her first gluten-free “Friendsgiving” after she was diagnosed with celiac disease nine years ago. “I am sure I was overwhelmed and nervous,” Murray recalls. “I tried to keep everything as simple as possible and as naturally gluten free as I could.” Controlling the menu proved key for the newly diagnosed Murray, giving her the power to make everything gluten free.

Managing guests’ expectations

Bringing guests into the mix can get tricky. Some may be nervous about whether the holiday meal expectations in their minds will be met by the gluten-free spread on the table. To address that concern, ask your friends and family about their favorite holiday dishes or even for favorite recipes so that you can make a gluten-free version of a few dishes.

When guests ask what they can bring, request simple items such as wine, coffee or soda, a veggie or fruit tray, or some corn chips. You could also ask for a bag of frozen corn or green beans that you can make on the spot.

After a few years, your guests will probably learn more about eating gluten free and understand the care involved. Some may want to contribute a side dish. If you’re simply not comfortable with the potential for cross-contamination introduced by a foreign kitchen, politely decline and let them know what else they can bring. In Murray’s instance, “some of the regulars to our holidays have a dish they are famous for that is confirmed gluten free. I graciously accept their offer for their contribution.” Murray’s family supported her gluten-free needs and learned how to cook for her. Now she and her husband no longer host but enjoy being hosted for the holidays by their respective parents, worry free.

tips and tricks for pulling off your meal

The first gluten-free meal I cooked was very traditional—turkey, mashed potatoes, gravy, stuffing, corn, cranberries, cornbread and pie.

Hospitality_Tips_Table_Angela_Sackett_003Up until a few years ago, I had never cooked a turkey before. So whether it was gluten free or not, I had to learn how to clean it out and prepare it for cooking. Don’t forget, you never buy a pre-stuffed turkey, nor should you stuff your turkey with gluten-filled stuffing because it contaminates the meat. A little Facetiming with my mother-in-law was all I needed to get it cleaned and in the oven.

I also had to learn how to make my mom’s gluten-free wild rice stuffing, a fabulous mix of wild, brown and white rice that has been the staple of my family Thanksgiving for years. Remember to take your time on things you are unfamiliar with. I made the stuffing one to two days ahead of time and concentrated on the turkey the day of.

Murray took a different approach. She started by researching recipes in cooking magazines. She looked for recipes that were naturally gluten free and modified other recipes to make them gluten free. That first meal comprised goat cheese-stuffed dates wrapped with bacon and a charcuterie plate for appetizers, then Murray’s turkey and fixings.

gluten-free baked goods

Bread has posed the biggest challenge in our house. Guests expect the kind of bread they eat on a regular basis, but most gluten-free bread just isn’t like that. As I mentioned earlier, we make a gluten-free cornbread to get around the issue all together. It meets people’s expectations better than gluten-free rolls would.

“Gluten-free baking can be tricky,” Murray says. “The first year, I tried to make a gluten-free pie crust from scratch, and it failed miserably.” So she enacted her back-up plan: She went to the store and bought a pre-made gluten-free crust to make her pumpkin-pecan pie. Crisis averted!

If you think gluten-free pie is a tall order or you don’t have time to make it, take a page out of my family’s holiday meal book and make ice cream cake. Slightly thaw vanilla ice cream, add your favorite mix-ins—gluten-free sandwich cookies work great—put it all in a spring form pan, then place it in the freezer for a day. Voila! You have an ice cream cake. It is fast and easy to make, and rates very high on the satisfaction scale in our house.

Still a little nervous? Murray recommends a few practice sessions for unfamiliar dishes to make sure they will come out just right on the big day. Just keep her two keys to a successful meal in mind: don’t be intimidated and keep it simple. You will end up with great food and, because it is all gluten free, your stress level will stay in check.

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Amy Leger blogs on her website, thesavvyceliac.com. She lives in Longmont, Colorado, with her husband and two daughters, one of whom has celiac disease.

Moving Your Gluten-Free Family

So you have decided to move! It’s time to pack up your belongings, purge things you no longer use or need, fix and clean your house, load a truck and then…move on. Your life as you know it is forever changed. And, in many ways, that includes your gluten-free life.

My family did just that this spring. We sold our house in Minnesota in February, and my husband, two teenage daughters and I were in our new home in Colorado in April. Besides the obvious things on a to-do list for moving your family across the country—packing and unpacking boxes, taking care of utilities and registering kids for school—I knew we would have a lot to do to acclimate to living gluten free in Colorado.

With a little preparation and investigation, you can set your family on a new healthy gluten-free path in your new home.

Location, location, location

Where are you going to live, and what do you know about it? If you are moving to a remote area where gluten-free food is less accessible versus an urban city where everything is at your fingertips, you will probably have to work to find new gluten-free resources.

gluten-free movingAs soon as you move, connect with people in the gluten-free community, which is easier than ever thanks to Google, Facebook, Twitter and other social media platforms. Find people in the area who share your gluten-free interests and exchange information. We met our first gluten-free friend at our daughter’s school. She was a school employee in charge of registration and saw celiac disease mentioned on the paperwork. She explained she was also gluten free and would be happy to meet for coffee and talk about gluten-free food in the area.

Spend some time getting to know your new city or town and its amenities. When we chose our new town of Longmont, we knew it was close to Boulder, where gluten-free living is abundant. But we didn’t know much about Longmont itself. So, the first weekend we were in town, we explored the downtown and found a gluten-free bakery called Amie’s Love that also serves breakfast and lunch. It was an unexpected and delightful surprise! The local farmers market can yield gluten-free treasures as well.

Gluten-free accommodations at school

As if there isn’t already enough to organize and prepare for your move, you may simultaneously be enrolling your gluten-free child in school. We did all of the paperwork before we moved so it was ready to go when we arrived in town. During that process, I got in contact with the school district’s nutrition department to discuss gluten-free accommodations for lunch.

The nutrition department had me fill out paperwork, and they already knew my 17-year-old gluten-free daughter had an established 504 Plan, which discusses her need for gluten-free school lunches. The district was ready to implement our gluten-free request when my daughter found out her new school had open lunch. This was another bonus. Instead of eating at school, she came home most days for lunch (and other days went out with friends) instead of trying to figure out a new protocol in the lunchroom. That worked for us, but it was nice to have everything in place in case she had to eat at school.

For younger children, make sure their grade-level teachers and school nurse know about their gluten-free needs. A 504 Plan helps notify school staff. Check with the 504 coordinator at your school if you don’t already have one for your child. Don’t forget to inform some of the other teachers who instruct art or family and consumer sciences (home economics), where gluten can be present in projects. And at the end of the school year and around holidays, be prepared to help with food for special events.

Finally, check in with your children daily to make sure being gluten free isn’t causing problems for them emotionally in their new school. Everyone who knew my daughter in her old school knew she was gluten free and didn’t stare at her in the lunchroom, for example. But moving to a new school could bring with it a whole new set of emotional concerns (staring, being singled out, getting a lot of questions, teasing) that you and your child may not be prepared for. Asking about it may help your children get their concerns out in the open.

Accept the change

A family move may seem easy enough: pack up your old house, move, unpack and get settled in your new house. But it is much more complex than that. A lot of changes are happening within the family—and that goes for gluten free, too. A new location means you may not be able to find your favorite foods at the local grocery store. Our family uses certain products that I have spent weeks trying to find. If I determine it isn’t here, I may need to move on, ask the manager of my local store to carry the product, or order it online.

By considering and acting on these gluten-free needs during your upcoming family move, you can focus on the million other things that need doing in your new home.

Amy Leger is the family editor for Gluten-Free Living. She also blogs on her website, thesavvyceliac.com. 

Shine On

The Blissful Sisters of Boulder dish on their gluten-free restaurant and new cookbook

Triplets Jennifer, Jessica and Jill Emich are as close as siblings can be. After college, Jennifer taught English in Costa Rica while Jessica and Jill went to culinary school in San Francisco. But they all came back together in Boulder, Colorado, where they opened a successful bar and restaurant called Trilogy. The high-energy bar provided great food and drink and many late nights. After nine years, the sisters closed the restaurant and started a catering company. Three years later, they moved on to a new adventure and opened their current restaurant, Shine Restaurant & Gathering Place, which offers a relaxed atmosphere and gluten-free food.

blissful sisters
The Blissful Sisters

Jessica, the first born of the triplets, has a master’s degree in holistic nutrition and certification in metabolic typing. She created the 100 percent gluten-free menu that includes good foods that heal your body.

Middle sister Jill works on product development, event production and community outreach.

Jennifer, the youngest of the three, works on the restaurant’s day-to-day operations. After learning she was gluten intolerant 15 years ago, going gluten free cleared up her psoriasis and body rashes.

Together the ladies form the Blissful Sisters.  Now they are sharing their way of life with their new cookbook Eat Drink Shine: Inspiration from Our Kitchen, which features all gluten-free recipes, including some Paleo and vegetarian dishes. Gluten-Free Living sat down with Jessica, Jill and Jennifer to discuss their lifestyle and restaurant mission, their favorite ingredients, and why they are called the Blissful Sisters.

Amy Leger: The three of you didn’t grow up in Boulder, but all three of you have lived here for a long time. What brought you here?

Jessica: Jill and I were living in San Francisco.

Jill: Jess was dating a guy who lived in Boulder.

Jessica: We were looking for a place to open a restaurant. In San Francisco, it was expensive. We were 23 when we moved here to Boulder and 24 when we opened up our first restaurant.

Jill: The guys didn’t work out, but we did!

AL: Where does the name Blissful Sisters come from?

Jill: We started a catering company after selling our first restaurant, Trilogy. During dinner we came up with words that describe ourselves, and we came up with blissful and sisters. We started Blissful Sisters Catering Company.

Jessica: People started to refer to us as the Blissful Sisters.

AL: Describe how healthy eating has changed your lives.

Jennifer: We didn’t have soda or sugar in our house growing up. It is the same in my cabinet now. When I went gluten free, it cleared up my rashes and helped my digestion. I eat what I like, and I eat whole foods. My energy levels improved. It helped me become more aware about what helps my body.

Jill: When I started going about 85 percent gluten free and Paleo, which is high-protein and vegetables, my energy levels went way up. Running restaurants and working a lot, I noticed a huge difference in energy levels, sleep and my overall attitude. I was more awake and more present.

Jessica: Chefing for so many years, I noticed 15 years ago people were coming in with allergies and asking for changes in their dishes. This was a little before Jennifer’s gluten intolerance, but around the same time. That’s what led me to get my master’s in nutrition. I want what I am serving to actually be healing for people. It gives my work and my passion more meaning.

AL: So why write a book? What makes this cookbook different from others?

Jill: We have always wanted to write a cookbook. People have wanted us to write a cookbook for the last 15 years. We wrote this in three to four months.

Jessica: It really flowed out of us and felt natural.

Jill: Because we owned a restaurant, because Jessica has her master’s in holistic nutrition, because of having gluten free in the family, we have a lot to share.

Jessica: We have witnessed a lot of eating.

AL: What does watching people eat tell you?

Jessica: You can see when some people dig into their food, they are more adventurous. Then some people are tentative or asking about every ingredient, and they are just more careful in life. Some people have an ease around food and they have no problem, but for others it is a struggle to be with food.

Jill: It reflects how they relate and how they treat themselves.

Jessica: We want to make eating easy and peaceful.

Jill: We hear that people are thankful that our restaurant is gluten free.

Jennifer: A few weeks ago a customer said she hasn’t been out to eat in three years. She has celiac disease. She came to our restaurant trusting what we are doing.

AL: Do you find it rewarding to safely fill the gluten-free niche?

Jennifer: Absolutely! I feel so proud! Many people come here and realize that gluten free isn’t tasteless or too dense. We have bagels, donuts, pancakes, all different kinds of breads. Some people don’t realize they are eating gluten free.

Jill: They might not care about gluten free, and they don’t have to.

Jennifer: It reinforces that gluten free can be delicious.

AL: Did you find it challenging to market a gluten-free restaurant?

Jessica: We wondered if we should make it 100 percent gluten free. We didn’t want to turn people off. We wanted people to know that everyone is welcome.

Jill: Yes. At first we didn’t advertise as being 100 percent gluten free. But now we own it.

AL: You talk about good digestion in the book, something many people may not think much about. Why is digestion important to address?

Jessica: You can eat the best diet in the world, but if you are not digesting it OK, you are not getting the nutrients into your cells. The health of your gut and digestion are directly linked to your immune system. It needs to function well. It helps you absorb food better and eliminate toxins. If digestion is slow it can cause…

Jill: …low energy…

Jessica: …skin and sleep problems, stomachaches, headaches…

Jennifer: …inflammation…

Jill: …even stress.

Jessica: Some people don’t have digestive problems. But when you are having health problems it should be one of the first things you look at.

AL: Do you think people understand how to improve their digestion with food?

Jessica: That is where the book comes in.

Jill: In the book, there are a lot of simple recipes around fermentation. Soaking grains or nuts for 24 hours, for example, are simple techniques that can have a huge effect on your digestion. Getting hydrated in the morning and exercising can aid in digestion. We believe if you have two glasses of water before coffee, it gets digestion moving and hydrates for the day.

Jessica: The bone broth in the book can be really helpful too.

AL: Not everyone has time to make fabulous, organic and whole-food dishes. So what are your tips for at home to, at the very least, improve the health benefits of what they are already making?

Jill: Soaking the grains can really make a difference hydrating first thing in the morning. And making the bone broths Jessica mentioned. They take minutes to make in the crockpot and freeze and use over time.

Jessica: Smoothies are a good one too. It feels good to dose yourself with good stuff in the morning.

Jennifer: One of the goals with the book is to offer easy recipes with ingredients people already have. We kept that in mind. People are feeling re-inspired by the recipes here. It doesn’t have to be hard. It really doesn’t.

AL: What is your favorite ingredient?

Jennifer: I love cauliflower. I think it is so versatile. You can make cauliflower rice or a crust with it.

Jill: Cashews. They are the lowest on the glycemic index of any nut. They have a creaminess, when you soak them and puree, they’re like cream.

Jessica: Powdered grass-fed gelatin is one of my favorite ingredients because of the powerful health benefits. It is good for hair, nails, skin, joints, ligaments, getting rid of cellulite. You name it, it is good for you. It is the same gelatin that makes bone broths so powerfully healing, but the powdered form can be used in ice pops, smoothies, marshmallows and more.

AL: The book has a lot of recipes, but it also has examples of what you three are doing to live a full, healthy life—like exercise and morning routines. Why include these in a cookbook?

Jill: It’s a whole lifestyle. It is not just about eating healthy. Exercise boosts your confidence. It’s also important with the way you start your day; to have a consciousness about it because it can affect your entire day.

Jennifer: We wanted to include this because people ask all the time what you do in your day, why does your skin look so good.

Jessica: People have all kinds of different access points of what inspires them to be healthy. It could be exercise that leads them to get healthier. If you go on a morning walk and change what you’re eating, I think they feed off each other.

AL: You have a cookbook, a restaurant and one of the only women-owned, award-winning breweries in the country. What’s next for you?

Jill: Product development on the Shine Potions. They are herbal-based tonics and very nourishing. They go well with spirits, too. They are in local grocery stores, liquor stores, bars and restaurants, and they are about to go national.

Jessica: We are thinking about another cookbook, too.

AL: Your brother has metachromatic leukodystrophy, a genetic disorder. Doctors didn’t think he would live past the age of 25; he’s now 45. How has his role in your family impacted the lives you lead now?

Jill: It has impacted us on every level. I have learned about unconditional love, patience and compassion.

Jessica: He has an immense amount of patience with himself. Then you self-reflect when you have full physical capability, it puts things into perspective.

AL: Working with your sisters, do you ever get annoyed with one another?

Jessica: Oh, yes. We push each other’s buttons. But at the end of the day the love is so deep, the sisterhood always comes first. When it comes to business, we will work it out.

Amy Leger is the family editor for Gluten-Free Living. She also blogs at her website, thesavvyceliac.com.

Get the FACS

Making School Cooking Class Safe for Gluten-Free Students

I will never forget the day—open house at my gluten-free daughter Emma’s school before the beginning of seventh grade. We went to the middle school, picked up her schedule, and then came the news: FACS class would begin in the fall, with the cooking segment. FACS is short for family and consumer sciences. Back in the day, we called it home economics, or home ec.

If you haven’t encountered this class with your gluten-free child and your school system offers it, it usually is part of the middle school curriculum or offered as an elective in high school. The goal is to give children a base knowledge of the kitchen—utensils, measurements and how to follow a recipe, make some basic foods, and clean up afterward.

As you can imagine, immersing your gluten-free child into this situation can be a little nerve-wracking for parents and even more difficult for the child. With a little extra legwork, FACS class can be made educational, fun and safe.

Cooking up gluten free in class

Eleven-year-old McKenna Juhnke of Fargo, North Dakota, was diagnosed with celiac disease six years ago. She just finished her first FACS class. Her brother, Austin, 15, also has celiac disease and went through FACS class—both did it successfully.

Their teacher provided a gluten-free alternative (flour or another ingredient) to make each recipe. “I always have an open line of communication with all teachers,” the kids’ mother, Stacey Juhnke, said about working with her children’s schools. She tells the teachers her children have celiac disease and have to eat a gluten-free diet. Juhnke made an arrangement with the FACS teacher. “If they couldn’t get the gluten-free ingredients they needed, then I would buy them. But [the school] had no problem buying them.”

The Juhnke children were able to have a successful gluten-free experience in FACS class because the teacher assigned one of the kitchens to be strictly gluten free. A few other kids in the class would cook with them and make only gluten-free foods. McKenna said she always tried the food she cooked and felt safe eating it.

Our experience was very different. When I emailed Emma’s teacher after open house (we were unable to reach her during the event), I explained Emma’s needs. The teacher suggested Emma sit in the library during the first lab, which involved baking cookies. While I didn’t like that idea, it was so early in the year I acquiesced, and Emma made her gluten-free cookies at home.

At the same time, I started working with the school’s 504 Plan coordinator to put a 504 Plan in place for Emma as soon as possible. According to the U.S. Department of Education, Section 504 of the Rehabilitation Act of 1973 “prohibits discrimination on the basis of disability in programs or activities that receive federal financial assistance from the Department of Education.” If your child’s school receives federal funds, the 504 Plan will allow a child with special needs to have generally the same experience in class as everyone else. In Emma’s case, that meant having access to gluten-free ingredients in FACS class.

The 504 Plan was finalized after Emma’s first cookie-baking lab. In the plan, I requested the teacher talk to me about the recipes before every cooking experience so we could figure out how to make them gluten free. It also mentioned not using wooden utensils or used cutting boards, or sharing colanders and toasters, to prevent cross-contamination.

I also offered to buy ingredients for the teacher and made her aware our district nutrition department had access to gluten-free ingredients and said it was willing to help.

Unfortunately, the teacher didn’t contact me to prepare for any of the cooking labs. Inevitably, I would always call when Emma came home from school and told me she had a cooking lab the next day. The teacher didn’t buy ingredients for her, never asked me to supply any, and was fine with Emma cooking gluten-filled meals and “just not eating it.” I tried to make it better, but the entire experience was less than successful.

In the end, Emma decided she would not take any more FACS classes.

Making gluten free happen in class

FACS class doesn’t have to be a negative experience for gluten-free students. But it does take good communication between student, parent and teacher, said Kim Graybill of McAlisterville, Pennsylvania, who has taught FACS for 27 years. Her website, familyconsumersciences.com, offers ideas and advice for other FACS teachers.

Graybill has had two gluten-free students over the years, plus another with a wheat allergy. She says student safety is a priority.

When she learns about a student’s health issue, Graybill said, she meets with the parents, student and nurse to fully understand it. “Obviously, you want to know what they can and can’t eat,” Graybill said. She looks for recipes that are easy to make with a gluten-free substitution, and she usually will pick up the gluten-free ingredients.

Parents also should be available to talk about the class and any gluten-free needs that might arise, Graybill said. A good working relationship with the family helps in case the teacher has questions. If it is not an easy gluten-free recipe fix, she works with the parents to figure out how to make it work. “I consider parents to be the experts,” she said. In the past, parents have provided both advice and certain ingredients when needed.

Graybill said having a gluten-free student in class also offers the opportunity to teach all students about managing food allergies. Even if the students don’t know anyone with a food allergy, they could encounter food allergies themselves, or those of a loved one, later in life.

While Graybill does what she can to make the class work for gluten-free students, what if your child’s teacher isn’t so accommodating? Juhnke said, “I would go to the principal and see about getting the child into another class. Come up with some alternative so your child can have the full FACS experience.”

Other considerations include getting the nurse involved to explain to the teacher why this is medically necessary. If you already have a 504 Plan for your child, make sure it is up to date and covers cooking in FACS class. If you don’t have one, start one, and involve the plan coordinator in working with the FACS teacher.

“Sitting out of class has never been an option in my classroom,” Graybill said. But if the food allergy is severe, “I think I would err on the side of caution and have the student sit out if there were no other way around it.”

Whether parents and teachers agree on the full class experience, doing some labs at home or a different option, in the end it is about making sure your child receives a good education. “I want kids to have basic skills,” said Graybill. “The process is more important than the tasting.” Deciphering ingredient labels, learning how to substitute ingredients, and understanding cross-contamination also are vital.

These skills might be even more important for someone who is gluten free, she said. “If these kids need to make their own food, they are going to have to learn their way around the kitchen.” GF

Amy Leger is the family editor for Gluten-Free Living. Her website is thesavvyceliac.com. She recently moved from Minnesota to Colorado with her husband and two daughters. 

Does My Child Have Celiac Disease?

Testing is the key to getting a definitive answer.

 

I’ll never forget when my daughter was officially diagnosed with celiac disease. The entire journey, from the onset of symptoms to the final confirmation from Emma’s gastroenterologist, is seared into my mind. Fifteen years ago I didn’t even know how to spell “celiac.”

The day you hear your child’s doctor say the words “celiac disease,” “tests” and “endoscopy” can be daunting as you face the prospect of dealing with a lifelong, chronic condition.

And then there’s the restrictive and unfamiliar diet that’s the only treatment. Even as it begins to sink in, your head is likely to be spinning with questions. What is involved in celiac disease testing? Does my child really need to go through all this? What are the long-term prospects for a normal, healthy life?

Testing is the place to start.

 

 

What’s wrong?

Emma started getting sick in 2000, around her first birthday. For months she had a cold she couldn’t shake. She had diarrhea and was vomiting and losing weight. At the same time, her belly was distended.

Despite the fact that Emma had classic gastrointestinal symptoms of celiac disease, it took four months and three doctors to get a final diagnosis.

Alessio Fasano, M.D., chief of the division of pediatric gastroenterology and nutrition at MassGeneral Hospital for Children in Boston and director of the Center for Celiac Research and Treatment there, says it is sometimes still hard to get a diagnosis of celiac disease because the common symptoms are just that…common.

“These are symptoms that every child at some point in his or her first years of life will experience,” Fasano says.

That might explain why our first doctor responded to my concerns about Emma’s bouts with vomiting by saying, “You know kids throw up, right?”

Extra-intestinal symptoms such as anemia, short stature and discoloration of teeth can also indicate celiac disease. Fasano says whether a child is suffering from classic gastrointestinal or extra-intestinal symptoms, when they are prolonged and start to affect the child’s lifestyle, doctors should begin looking for answers.

 

How celiac disease is diagnosed

Diagnosis of celiac disease begins with a blood test, which you might also hear called serology. The simple test can be done at your pediatrician’s office, and you get the results in a few days. The test looks for specific biomarkers, known as anti-tissue transglutaminase (tTG) antibodies, indicative of celiac disease.

0116-fam-matt-ryan
Ryan Miller tested positive for celiac disease and is thriving on the gluten-free diet.

Tasha Miller of Naperville, Illinois, was shocked when her then 14-year-old son Ryan’s bloodwork came back positive for celiac disease. He was tested along with his older and younger brothers in 2014 because Miller’s husband was concerned their youngest son, Adam, had symptoms that might be celiac disease. But Adam’s test came back negative, and Ryan was the only one who had positive results.

Ryan then went through the traditional second step. He had an endoscopy to confirm his diagnosis. During an endoscopy the child is put under anesthesia, and doctors insert a tube through the mouth and into the small intestine to biopsy a few samples of the intestinal lining. After the procedure, doctors might have some idea how likely celiac disease is based on what they’ve observed, but they cannot confirm the diagnosis until the biopsy sample is analyzed by a pathologist. That procedure usually takes a few days.

Some gastroenterologists wonder whether children still need to undergo the endoscopy to confirm celiac disease. Fasano says the European Society for Pediatric Gastroenterology, Hepatology and Nutrition supports the idea that if a child has symptoms, a positive blood test, carries the HLA DQ2 and/or DQ8 gene found in people with celiac disease and has resolution of symptoms on the gluten-free diet, the endoscopy is unnecessary.

But Fasano always recommends the endoscopy to confirm the final diagnosis. “The information you gain from this really overcomes the possible risk of putting your kids through a procedure like an endoscopy,” he notes.

When Ryan had his endoscopy, Miller says doctors explained what they were going to do before the procedure started. “He came out of the procedure slowly but fine,” Miller recalls. “It took him about an hour or so to wake up and readjust to the world.” Since the throat can be a bit tender after having the tube inserted, Miller says Ryan had a gluten-free milkshake on the way home.

 

Asymptomatic children

Unlike Emma, Ryan had no symptoms of celiac disease. But his mother says it was good fortune that he was diagnosed. “I am glad we discovered it,” Miller says, adding that Ryan took charge of his gluten-free diet and does not cheat. And he has grown several inches since his diagnosis.

Fasano is often asked whether an asymptomatic child really needs to go gluten free. He says asymptomatic children who have been diagnosed should go on the gluten-free diet to help prevent future, and potentially worse, symptoms, such as diabetes. “Then it is too late, there is nothing you can do about it,” Fasano says. Additionally lack of symptoms does not mean that damage is not being done to the absorbing lining of the intestine.

Young children are more likely to have classic gastrointestinal symptoms, making them easier to diagnose than teenagers, Fasano says. Teens’ symptoms tend to be more random. And they are more independent and more focused on their friends and fitting in. As a result they might not share information with their parents.

“In general parents’ IQs drop 100 points when a kid goes from childhood to being a teenager,” Fasano says. “Therefore they are not seeking their parents’ advice with the symptoms they may be experiencing.”

 

What parents need to know

If your child is having symptoms of celiac disease or you have a family history of the condition, Fasano says these are the things you need to know:

Get the blood test. It is simple, cheap and reliable.

Do not put your child on a gluten-free diet to see if he or she feels better before getting tested.

“Among all the mistakes that can be made, [taking your child off gluten before testing] is the most severe one you can imagine,” Fasano says. Test results may not be accurate if the gluten-free diet is being followed, and you will not be able to get a definitive diagnosis. “You would not do this with any other disease,” Fasano says. “Nobody would dare put their child on insulin just because he or she is urinating or drinking too much [even though these are common signs of diabetes].”

Follow the blood testing with an endoscopy and biopsy of the small intestine.

“In lieu of more solid data, I would suggest the endoscopy is still needed to confirm a celiac diagnosis,” Fasano says. “I am not disputing the fact that in the future we may get rid of the endoscopy, but I don’t think we are there yet.”

If your child does have celiac disease, other family members should also be tested because it is a genetic autoimmune disease.

You should also consider genetic testing for the family. This test, which is also done by collecting a blood sample, determines if you carry the genes necessary to have celiac disease. If someone has a negative test result, it rules out the possibility that celiac disease will develop and makes repeated antibody tests unnecessary. If the test is positive, it does not mean you or your child have celiac disease, only the potential to develop it, in which case antibody tests should be done periodically.

Armed with this information, you can prepare yourself and your child for testing for celiac disease, with the goal of getting the most accurate result possible.

 

 

Blood tests for celiac disease

  • Anti-tissue transglutaminase antibody (tTG-IgA): This is the primary blood test used to diagnose celiac disease. It looks for the two types of antibodies found in the blood when someone has celiac disease: immunoglobulin A (IgA) and immunoglobulin G (IgG). The test is also used as a follow up to see how well a celiac disease patient is doing on a gluten-free diet. If gluten is getting into the diet, antibodies will show up.
  • Total serum IgA: This tests for IgA deficiency, a condition that can cause a false IgA-anti-tTG or EMA result. This test is often done in conjunction with the tTg-IgA.
  • Deamidated gliadin peptide (DGP IgA and IgG): This is a go-to test if the IgA levels are low and the anti-tTg test is negative. It is also a good test for celiac disease in children younger than 2 years old because their levels of IgA-anti-tTG can fluctuate at this age, Fasano says.
  • IgA endomysial antibody (EMA): While very accurate, this test is not as sensitive as the IgA-anti-tTg. EMA is done by an indirect immunofluorescent assay, a more expensive and time-consuming process than the anti-tTG’s ELISA testing. It is often reserved for patients who are more difficult to diagnose.
Sources: Alessio Fasano, M.D. director of MassGeneral Hospital for Children’s Center for Celiac Research and Treatment, Celiac.org, LabTestsOnline.org and NIDDK.NIH.gov

Related articles

Development of Childhood Celiac Disease

The Basic Gluten-Free Diet

Boston Children’s Hospital Releases Videos for Kids with Celiac

Top 10 Ingredients You Really Don’t Need to Worry About

 

 

Amy Leger is the family editor for Gluten-Free Living. She lives in Minnesota with her husband and two daughters, one of whom has celiac disease. She also blogs about the gluten-free lifestyle on her website, thesavvyceliac.com.

Tips for Preserving Holiday Traditions on the Gluten-Free Diet

Most of us have cherished holiday memories from time spent sharing traditions with our families. All kinds of opportunities for special moments come with the parties and school and religious activities that quickly fill the calendar this time of year. Many of these holiday traditions are related to the foods we share. When you are gluten free, especially at first, beloved foods can present as many problems as pleasure. But there are ways to continue to enjoy decorating cookies, building gingerbread houses and other food related activities while preventing gluten from ruining the fun.

Cookie decorating

While plain cookies are just fine most of the year, the holidays bring out cookie finery. Whether the cookies are shaped like a Christmas trees, Hanukkah stars or seasonal snowflakes, decorating them is a big event in many homes. This tradition can continue without interruption after a diagnosis of celiac disease or gluten sensitivity. But you do have to make some adjustments.

About six months after my then nearly 2-year-old daughter, Emma, was diagnosed with celiac disease, my employer had a children’s holiday party. Cookies for decorating were everywhere. I was new to the gluten-free world, and I was not prepared. In this pinch, Emma and I decorated a few cookies together, left them at the table and immediately washed our hands.

But there are alternatives to my novice, fly-by-the-seat-of-your-pants choice. Christine Lintz of Napa, California, has celiac disease, and her 6-year-old daughter Gianna is gluten sensitive. Lintz manages cookie decorating parties by talking to the event host and offering to bring gluten-free cookies, icing, candy and other decorating treats.

If she can’t work it out with the host, Lintz just brings gluten-free cookies and decorating tools. “That’s the fun, to eat while you’re doing the project,” she says, noting that otherwise she and her daughter would have to stick to decorating only. You might find that other children and parents want to use the gluten-free goodies you’ve brought. It’s great to share as long as you can prevent cross-contamination. For example, gluten-containing cookies can’t be dipped into your container of sprinkles. Bring a spoon that other kids can use to scoop up some sprinkles. Likewise, utensils used for icing can’t go from a gluten-containing cookie into the icing being used on the gluten-free version. Again, use a spoon to scoop the icing onto a separate plate, which will do the trick as long as the spoon is kept clean.

Lintz says her daughter feels more involved when she helps select the decorations. “The last time we went to a cookie decorating event, we made giant gingerbread men,” Lintz says. “I asked my daughter, ‘Do we want sprinkles? Chocolate chips?’ She said, ‘Sprinkles always make things more fun.’”

Cookie exchanges

Popular neighborhood or family cookie exchanges create their own challenges.

Julia Babka-Kurzrock does a lot of baking for her husband, Serge Babka, 17-year-old daughter, Sophie, and 15-year-old son, Zach, all three of whom have celiac disease. She used to participate in cookie exchanges with friends who tried to bake gluten-free cookies. “They would try to see what they could do to make gluten-free cookies. But their mixers just weren’t clean enough. So we don’t do that anymore,” Babka-Kurzrock said.

Others have worked out ways to stick with their cookie-exchange group. They have friends or family who understand cross-contamination and work with clean utensils and safe ingredients. The of use gluten-free baking mixes, preparing cookies that can be mixed with a bowl and spoon, and using recipes that are naturally gluten free, such as meringues or flourless cookies, can help prevent cross-contamination.

Or you can participate in a cookie exchange through a local celiac disease support group. Many groups have annual cookie exchanges where the expectation is that everyone knows how to create safe gluten-free cookies. Check with a group near you to see whether an exchange is planned.

Hanukkah holiday traditions

Traditional Hanukkah recipes, including potato latkes, also presented a challenge for Babka-Kurzrock. But she now uses gluten-free matzo, which has become more readily available in recent years. Sophie Babka says her mom brings gluten-free latkes to their temple so Sophie and Zach have a supply for Hanukkah celebrations at Hebrew school.

Overall the family finds it’s getting easier to manage being gluten free during the Jewish holidays. “There are a lot of events at our temple,” Babka-Kurzrock says. “We have a lot of folks who are getting more familiar with gluten free.” At big events, the temple staff sets up a table with gluten-free foods separate from the main selection to help prevent cross-contamination.

But there is one traditional Hanukkah food Babka-Kurzrock says her children have never experienced: the fried jelly donuts called Sufganiyot. So far, they haven’t found a gluten-free version, she notes. However, it’s easy to keep the Hanukkah tradition of using oil to prepare foods by frying some simple doughnut holes.

Gingerbread houses

Gingerbread houses, with their candy shingle roofs, gumdrop shrubs and peppermint stick pillars, are irresistible for kids of all ages. But how to join in on the architectural fun when you’re gluten free? Some parents allow their gluten-free children to decorate a house made with gluten-containing gingerbread, assuming they won’t eat it anyway.

“We did buy the gingerbread house kit from a local store and made it,” Amanda Campbell of Kansas City, Missouri, says. Campbell’s 6-year-old son, Isaac, has celiac disease, and her 10-year-old son, Evan, is gluten sensitive. “We couldn’t eat it, of course,” she says. “So later we made homemade gluten-free gingerbread and sugar cookies to decorate and enjoy.”

Other parents want their children to use completely gluten-free items, including the gingerbread. Elizabeth Carroll of Chicago, Illinois, makes the gingerbread used by her 12-year-old daughter, who has celiac disease. Campbell mixes the gingerbread, rolls it out and uses paper patterns to cut out the roof and walls, complete with openings for windows and the door. She began making the gingerbread when her daughter was diagnosed about nine years ago as a way to preserve holiday traditions. “I started this all very early. I was so sad to lose traditions,” Carroll says.

If your child is making a gingerbread house away from home, talk with the person in charge see what you need to provide if you want the project to be gluten free.

While it may take a little extra work to keep holiday traditions alive, you don’t have to give up on them just because you are gluten free. As with many aspects of the gluten-free diet, it just takes a little ingenuity.

Quick construction of a gluten-free gingerbread house

You can make a gluten-free gingerbread house with this easy shortcut, though it won’t be edible.

Use gluten-free graham crackers such as Kinnikinnick’s S’moreables or Schar’s Honeygrams. Clean out a paper milk carton and cover it with gluten-free icing, then “paste” the crackers onto the sides and top.  Decorate with the icing, drawing on windows and doors, and use candy for roof shingles and other flourishes.

Also, several companies sell kits to simplify building a gluten-free gingerbread house. We found these options:

Amy Leger is the family editor for Gluten-Free Living. She also is the founder of and writes frequent articles for her website, TheSavvyCeliac.com. She is married and has two daughters, one of whom has celiac disease.

How to Blend Gluten-Free Food & Family for the Holidays

Tips for enjoying good food and good company

As we all know, the holidays can be stressful: buying presents, decorating, traveling and visiting family and friends. Visiting family can create particular problems if you follow the gluten-free diet and everything is planned around meals.
No one wants to get sick over the holidays. But it can be difficult to manage your dietary needs when someone else is in charge in the kitchen, particularly if they are unfamiliar with how to make a safe gluten-free meal. Sometimes intentions arefm-pull-1 good, but the end result is food you can’t have because of particular ingredients or cross-contamination issues. Other times your diet is not taken seriously and little effort is made to meet gluten-free needs.

In all these cases feelings can be hurt around the holiday table. And family dynamics and holiday expectations often come into play. But there are steps you can take to make your visit safe and pleasant.

 

When food is mingling along with the family

Cross-contamination is probably the single biggest concern when you are sharing the holiday meal with family. Most hosts do their best to create a few gluten-free options, but things happen that could easily turn a gluten-free meal into a cross-contamination nightmare.

For example, the cook might not know that while most plain turkey and ham is gluten free, you always have to read the label to be sure no gluten-containing ingredients are used in seasonings. They might be unwilling to give up the tradition of stuffing the turkey with wheat bread, thinking you can still have a slice. Or it can be something as simple as absent-mindedly using the same spoon to dish out wheat-based stuffing and then the otherwise gluten-free mashed potatoes.

fm-pull-2The best solution is the common-sense approach of talking to family members who are hosting ahead of time. Ask about the items they’ll be serving. Explain how easily cross contamination can occur and offer to help in the kitchen. Sometimes the best thing is to simply ask what you can do to be the most helpful, advises Melanie Potock, an author who has written about the joys of food and a feeding specialist who works with gluten-free and allergic children. It could be by bringing dessert or side dishes or baking gluten-free bread. It might simply be providing a gluten-free version of an ingredient, pasta, for example, that can easily be used in a favorite family recipe.

Alexa Trussoni Cushman of Fairfax, Va., has celiac disease and has done all of the above to make it easier for her hosts to meet her gluten-free needs. “I approach friends and family very openly about my needs … but I need to know whether to bring my own things or if they can handle gluten-free cooking,” she says. Gluten-free pie and gravy have always been welcome contributions.

If you happen to be the host of a holiday meal that includes a gluten-free family member, don’t be offended by offers of help. “Often, people on restrictive diets come prepared, so, if they offer to bring a dish to share, let them,” etiquette expert Emily Post says on emilypost.com. Also, go over the foods you are serving and their ingredients with your guest. Accepting preparation tips will give you a quick education. And you may be able to keep your guest from accidentally consuming gluten.

Once the food is out of the kitchen and on the table, cross contamination can be avoided in a few ways. If every item has a separate serving utensil at the start it will reduce chances of wandering spoons and ladles. If other guests are unlikely to be mindful of keeping serving utensils separate, it’s usually a good idea for gluten-free guests to serve themselves first.

On a buffet, it can be helpful to have artfully done little cards that specify which foods are gluten free. This does double duty by letting gluten-free guests know which items they can have and it reminds other guests to be careful about cross contamination. Gluten-free foods can be grouped together on the table to further keep them separated from gluten-containing items and accidental cross contamination. Some families have a separate gluten-free table, and though this may seem a little extreme, they say it works well and has enabled them to keep sharing the holidays.

 

The gluten-free diet gets no respect

fm-pull-3Another serious issue that sometimes comes up during holidays with family is a lack of acceptance or understanding of the real need for a gluten-free diet.

Sonya Nelson Goergen of Moorhead, Minn., has celiac disease and finds people don’t “get” what gluten is. “They think that it’s like eating low-fat for people who have heart disease,” she says. “They don’t understand why you can’t just have a little.”

Others who have celiac disease or gluten intolerance say they have run into situations where family members have said a dish was gluten-free even though it actually contained some gluten. In some cases, the family members did not understand that even a little gluten is forbidden. In others they purposely dismissed concerns about gluten as overblown and complete avoidance as unnecessary.

If you were sick prior to being diagnosed with celiac disease or gluten intolerance and your family is familiar with your journey to good health on the gluten-free diet, they are more likely to understand the importance of sticking to it. If not, do your best to share information about what being gluten-free means and how critical it is.

If you have family members who resent having to alter traditional dishes to meet your needs, spend some time before the holidays to perfect one or two recipes in versions they’d never suspect were gluten free. Make sure everyone knows it’s OK if some of the foods served are off limits to you as long as you have some choices. That can head off complaints that everything has to revolve around you and your gluten-free diet.

Of course, it would be ideal if most foods were gluten-free and everyone was accepting and caring about the particular issues you face. But most families are not ideal, and everyone has to give a little to get along.

fam-matters-13If the gluten free guest is your child, take any extra steps to be sure they will have enough gluten-free options during your visit. It can be particularly hard for kids to pass on breads and desserts that have gluten so bring along their gluten-free favorites in these categories. If your children are very young you are likely to fill their plates and can look out for cross contamination. Once they are old enough to serve themselves, make sure they understand they should take the same kind of precautions as in a restaurant and verify the gluten-free status of the foods they choose.

Family members who host holiday gatherings should know you would prefer that they be honest about any possible gluten-containing foods or cross-contamination issues. Let them know it works best for you to decide, based on some basic factual information, whether you can put something on your holiday plate. They may feel more comfortable knowing the decision about whether something is safe is taken out of their hands. Also let them know you appreciate the attention and effort that goes into serving gluten-free options. A nice host or hostess gift, perhaps something that happens to be gluten free, is a concrete way to say thanks.

 

If problems persist

When all else fails — take the holiday meal into your own hands.

If you continue to struggle to have a happy holiday because family members can’t or won’t give the gluten-free diet its due, then it’s time to move the celebration to your house.  Another more positive reason to host could be that you are confident enough in your gluten-free cooking skills to put on the holiday production. Whatever the motivation, a holiday in your house makes it easier to have a gluten-free meal with all the fun side dishes and dessert you want — with no fear of cross-contamination.

fam-matters-4Trussoni Cushman, who is pregnant with her first child, is looking forward to making that switch. “We plan to do most holidays at our house after this year,” she says. “And whoever wants to join us can do so, as we want to establish traditions in our home.”

If you live near family, you could also have a movable holiday where you host either the main meal or just dessert. That way you have control over one portion of the day’s celebration.

Some accommodations for the gluten-free diet have to be made somewhere during the holidays. But that does not mean worry or disagreement should overshadow the happiness we associate with the season. Make the arrangements that work best within your family and then enjoy each other’s company.

 

 Host Handout

Here’s an easy guide you can give in advance to a host who has invited you to a holiday meal:

I am looking forward to sharing the upcoming holiday with you. If you are looking for gluten-free foods for the holiday meal to which you have so graciously invited me, here are a few you might try.

  • Jennie-O or Honeysuckle White Turkey (double check label/website)
  • Mashed potatoes with butter
  • Mix turkey drippings with corn starch as a thickener for gravy
  • Any steamed vegetable
  • Ice cream sundaes or Jell-O for dessert

 

 

 

Amy Leger is the mom of a 13-year-old gluten-free daughter. She writes about all things gluten free on her website, thesavvyceliac.com. Amy lives in Minnesota with her family.

 

 

 

Author Jax Peters Lowell Uses Humor to Deal with the Gluten-Free Life

What is the recipe for a good gluten-free life?

It likely includes: knowledge of gluten-free ingredients; skill at reading food labels; a little cooking experience; a dash of persistence; and a good helping of humor.

Author Jax Peters Lowell seems to have mastered this recipe for successfully living gluten free.

gluten-free-revolutionLowell, diagnosed with celiac disease in the early 1980s, published her first book about the gluten-free life, Against the Grain, in 1995. She says it was the kind of book she felt she needed when she was newly diagnosed. Two more books followed: the children’s book No More Cupcakes and Tummy Aches in 2004 and The Gluten-Free Bible in 2005.

A published poet and novelist, Lowell has returned to the gluten-free theme with her newest book, The Gluten-Free Revolution. She says it is a resource for anyone who is gluten free. Filled with personal stories and humor, the book covers traveling, managing social situations, talking to doctors, working with restaurants and much more.

Gluten-Free Living’s Amy Leger talked with Lowell about her early gluten-free years, the inspiration for her gluten-free writing, and why humor might actually be the best medicine.

 

 

Amy Leger: You were diagnosed with celiac disease when very little was known about it. Tell us more about getting diagnosed.

Jax Peters Lowell: My mother had a favorite picture of me as a toddler at the beach, and there I was with a chocolate mustache and a frown. She loved that picture of me in my little bathing suit, stick thin legs and soccer ball belly.

I learned I had celiac disease many years after that photo was taken, and in the craziest way. I was having bone pain, serious bone pain. A doctor X-rayed me and asked, “So when did you fracture your wrist?” [I was unaware of having fractured my wrist and] I said, “I don’t think I would forget something like that.” God knows what he thought of me. Had I been dancing on the tables? No. The truth is, that was my first clue. I literally fractured my right wrist from lack of calcium absorption. After that I had brain fog and fatigue, and I stopped eating. I was 90 pounds. I was a human Q-Tip. Doctors at one time thought I had lymphoma.

I realized all those years after that little baby picture that celiac disease is silent and pernicious. And when it finally let loose, I was ravaged by it. I finally got diagnosed, and it took me a very long time to get better.

 

AL: How did you handle your diagnosis?

JPL: I went to Paris. There’s a reaction to celiac disease—go to the bread capital of the world. I packed some rice cakes. I wrote a ridiculous gluten-free dining card. I used school-girl French. Basically it said, “If I have any farina I’ll have a disease in my chair.”

But everybody loved me there. They gave us wine and cheese and glared at my husband if he even imagined ogling a tart. I just thought this is the way it has to be, that I could figure this out. I began to read anything I could—every scrap of material, every research paper I could find. I vowed never to be that sick again.

 

AL: What led you to write your first book?

JPL: I went to an early Celiac Sprue Association conference in Chicago. I didn’t know a soul who had celiac disease. I met the saddest, most marginalized, sickest and depressed people. I am by nature optimistic, and I have a good sense of humor. I was just glad I didn’t have lymphoma and didn’t have to take medicine.

I remember one woman who drove with a trailer full of her food because she was afraid to eat anywhere. I didn’t think I had anything in common with these people. We were waiting outside the hall, and the minute those doors opened this aggressively hungry crowd just stormed the place. And I did, too. I realized I had the same ache [for good, safe food]. There were pies on the table. Probably the worst pies ever. But that dough and sticky fruit; that sweet burnt smell that made us feel normal.

I thought, “These people need a voice. I need a voice.” That is when I began to think about writing Against the Grain.

 

AL: How is The Gluten-Free Revolution different?

JPL: We all need a resource like an encyclopedia. We need to know how to live gluten free and look beyond the definition of celiac disease and gluten intolerance. The book looks at the diet itself, psychological issues of being on the diet and sorting out truth from trend. I am a bit of a nag in the book because I find different ways to say the same thing, which is, “Do not go on the gluten-free diet until you are tested for celiac disease.”

 

AL: What do you think of the popularity of everything gluten free?

JPL:  These are great times with a great selection of food for people with celiac disease. But they are hard times in terms of getting information. When you inquire about food at a restaurant or about a grocery product, who are you asking if something is gluten free and how much do they know?

Once I noticed a big pasta restaurant. I went in and asked, “Do you have gluten-free options here?” The employee’s face lit up and she said “Our gluten-free customers love the whole wheat pasta!” What if a new gluten-free eater had asked her that question? They might not have known any better and eaten the pasta.

AL: How would you describe your gluten-free writing style?

JPL: First, unlike a lot of people in the world of gluten-free writing, I am a novelist and poet. For me, story is very important. That is how we learn everything on any subject. I believe that food is the narrative that runs through our lives. So I tell stories in the book that are keenly pertinent to the subject of that particular chapter. Some of them are emotional.

 

AL: A lot has changed since you were diagnosed. Give me an example of

how you managed the diet early on versus what it is like for you today.

JPL: My friends still talk about the apple crisp that I made long ago that tasted like dirt. Everything was made with brown rice. We didn’t have these wonderful, sophisticated blends of flours back then.

In the beginning I had to sit down with the chef if we were going out. I would often go to the restaurant ahead of time to discuss the fact that I and 100 of my friends would like to come, and I needed to have a safe meal. I exaggerated the number so the chef would just listen to me. It was always a big negotiation.

In comparison, I recently went to a fabulous restaurant in Philadelphia. I asked for polenta and the waiter said, “The dish is gluten free, but I must tell you we sourced the cornmeal from a facility that also uses wheat.” I was ready to swoon. I used to have to talk restaurant staff through everything … Eating is wonderful now. I recently had a gluten-free brioche roll swimming in a puddle of pumpkin butter, and I didn’t want to order the rest of the dinner. I just wanted to order three of those and go home.

 

AL:  Giving back to the gluten-free community is also important to you.

JPL: When people are not well, they find me. It gives me great pleasure to help them. Every now and then my doctor will call and ask me to talk to a patient who is having trouble following the diet because they are missing their favorite foods. When I talk to them, most of the time people are surprised by what they can have and that pleases them. I do love helping a confused gluten-free shopper at a grocery store. I let them know, “This is not going to be bad at all.” I love doing that.

 

AL: What is the weirdest gluten-free moment you have had?

JPL: Weirdest or most stupid? Years before I knew better, I was trying to get my health back. Somebody told me that brewer’s yeast would help me a lot. So I took it. To my credit I hadn’t written my book yet. I ended up going back to my doctor because I was so sick. I said, “I’ve been taking brewer’s yeast to help with digestion.” He said “What? Why don’t you just sit down at a bar and drink a big glass of beer? It would taste better!” I was so embarrassed. I think everyone has one of those moments.

 

AL: What are your two best tips for living gluten free?

JPL: My No. 1 piece of advice: Don’t run around buying up everything gluten free. Start small. Gluten-free products are really expensive. Know how you like to eat. Get some pantry staples and buy them in small batches in case you don’t like them. If you don’t like something, don’t buy it again.

Second clean out your kitchen. If you can, make it a gluten-safe or gluten-free kitchen. Replace contaminated foods and kitchen tools. If you have a combination kitchen, get a toaster oven [that you can keep from getting cross-contaminated]. Organize your refrigerator, and put the gluten-containing ingredients on the bottom to avoid cross-contamination.

 

AL: You are very positive about the gluten-free lifestyle and celiac disease. We have even shared a laugh in this interview. Do you ever go home and say, “This stinks?”

JPL: No, not any more. I think there are a lot of things in life that stink much more than celiac disease. The feeling-sorry-for-yourself part was a long time ago with me. I think that is the natural outgrowth of a diagnosis. If you don’t allow yourself the wallowing, if you suppress it, it will show up when you least expect it and when you least can deal with it.

I feel there is so much great food out there. There is nothing that I lack. I honestly think this is the best time to be gluten free.

 

AL: But there are people who really have trouble with the diet, which can breed some negativity.

JPL: Absolutely. That’s why I write about those feelings. And I put them out there. It’s okay to share that negativity. If someone in your family circle or circle of friends says they have heard enough from you about this, my advice is to find the next person and talk to them about it, until you don’t have to talk about it anymore.

 

AL: How has humor helped you manage being gluten free?

JPL: There are many things about the gluten-free diet and the serious conditions associated with celiac disease that are decidedly not funny. I have had my share of gloom and doom, especially at the beginning when I thought I would never recover or eat a good meal again.

But I have always seen the absurdity in life. I honestly believe finding the humor in a situation is the best defense against negativity and the sense that we are living with less than most people. Humor, for me, is a way of resisting the attachment to illness or difficulty and the inevitable disappointments on a restricted diet. It is said that laughter is the best medicine. I find this to be true. When Against the Grain was first published, the letters that moved me the most were from readers who told me they laughed for the first time.

I know of no study that proves complainers do any better than those who can make a joke about their situation. I would go so far as to say I attribute my good health in part to the ability to find the humor in situations I can control or change.

 

Amy Leger, Gluten-Free Living’s family editor, also frequently does Q&A interviews for the magazine. 

What’s Gluten Free at the Minnesota State Fair?

From the most bizarre foods to the very basic–and if the food is on a stick that’s even better–you can find everything at the Minnesota State Fair.

I remember attending the fair 14 years ago with my 2-year-old daughter Emma, who was newly diagnosed with celiac disease. Except for the corn on the cob at the Corn Roast, there was nothing I  dared feed her. As fair-goers know, almost everything is battered and deep fried.

But the gluten-free scene has changed drastically, starting about 10 years ago. “Gluten free has certainly grown within the fair,” says Dennis Larson, licensed administration manager at the Minnesota State Fair. Part of his job is to oversee the food and beverages for the 12 days of the fair., which concluded on Labor Day. His daughter also has celiac disease.gluten free at the Minnesota State Fair

“The first few years it was a learning curve for vendors. They learned being gluten   free isn’t as simple as taking the bun off a burger,” Larson says. Once the fair organizers started keeping a list of gluten-free options, they also started scrutinizing ingredients and preparation. The first year there were only a few vendors. At the 2015 fair, it grew to 48; the most in Minnesota State Fair history.

Each year creation of the list begins with a mass mailing to roughly 250 food vendors, who then detail the ingredients they’ll use and the steps in the preparation process. To be safe, fair-goers are advised to still ask the gluten-free questions they would ask at any restaurant to ensure they are comfortable eating the food. But the list is a great  starting place.

Sampling the Gluten-free Food
Sarah Nielsen has celiac disease and grew up in Minnesota, but now lives just outside Milwaukee, Wisconsin. She says the gluten-free food list was one of the reasons she came to the fair this year.

“My uncle performed with his band most of the day…I would have been there regardless. But the idea of pages of gluten-free fair food was enticing and helped make the decision [to come] an easy one,” Nielsen says.

Items on the list included Falafel on a Stick, Potato Skins with Cheese and Bacon, Maple Glazed Bacon on a Stick, Bee Nice Blueberry Chipotle Sweminnesota bacon on a sticket Corn Muffins, Mango Chai and Mocha Ice Cream Bars on a Stick, Deep Fried Risotto Poppers and Cherry Rhubarb Cider.

Falafel on a Stick was among Nielsen’s favorites. She says this was a treat, compared to when she came  before the gluten-free list was available.

“I have [been to the fair before], but it wasn’t pretty. It was early in my diagnosis. I think I ended up with frozen grapes,” she says.

State Fair Vendors
Vendors are buying into the gluten-free idea, and the Blueberry Chipotle Sweet Corn Muffin made by the Minnesota Farmer’s Union was a hot new item. Writers from Minneapolis/St. Paul Magazine told readers to “Get It” in an article that summarized and critiqued the new 2015 fair foods.I thought it was very moist and tasty. And if you like that extra chipotle kick, you’ll really be a fan.

Some vendors made changes to create a better gluten-free environment at the fair. This year, French Meadow Bakery and Café created a gluten-free sandwich section, completeminnesota sandwich description with separate area, ingredients, utensils and a Panini press. Others made ingredient changes to reduce the chance of cross-contamination mistakes. Sonny’s Gluten-free Beer-battered Brat, which is deep fried in a dedicated fryer, was back for a second year

The success of the gluten-free list is also creating awareness of other food allergens. Larson says he got questions about why there aren’t dairy-free, peanut-free or sugar-free lists. He says the fair is open to adding these lists if someone is willing to do the legwork, as was the case with the gluten-free list.

Nielsen hopes other state fairs can get proactive and create and market gluten-free foods, especially at her state fair. “The Milwaukee gluten-free community is in awe of the Minnesota State Fair gluten-free options…I intend to use my fair experience as motivation to bring a more gluten-free friendly experience to the Wisconsin State Fair,” Nielsen says.

The Minnesota State Fair wrapped up on Labor Day, but before you know it fair will be here again. So if you want to check out the gluten-free fair food in 2016, just reserve some travel time the 12 days before Labor Day.

Amy Leger is the family editor of Gluten-Free Living. This is her second year organizing the Gluten-Free Awareness booth and creating the gluten-free food list at the Minnesota State Fair.

Genetic Testing Can Reveal Your Family’s Chances of Developing Celiac Disease

My family is like many you hear about in which celiac disease travels through the family tree. But in some other families there seems to be just one “rogue” case, and no one knows where it came from.

As I recently learned, the genetics of this autoimmune disorder can be confounding.

Celiac disease can be passed down through the generations. The University of Chicago’s Celiac Disease Center reports that if a family member is diagnosed with celiac disease there is a one in 20 chance that a first-degree relative—a parent, child or sibling—will also get celiac disease. That prevalence drops to one in 39 for second-degree relatives such as aunts, uncles and grandparents.

How does celiac disease run through families?

I have been giving that topic a lot of thought lately. My brother and my daughter have confirmed cases of celiac disease. My father carries a gene for it but started a gluten-free diet at a doctor’s request before getting the blood antibody test for celiac disease. He remains gluten free to this day. His aunt also was diagnosed with celiac disease and lived with it for 40 years before her death in the 2000s.

Because of my family history, I get my blood tested for celiac disease antibodies every few years. But I started wondering why celiac disease hasn’t reared its ugly head with me just yet.

I assumed I did not need a genetic test for the disease because, of course, I was the gene carrier. I have felt this way for more than a decade.

Then something changed. I was worried I had celiac disease but was asymptomatic. I didn’t want to find out years from now that I had the condition all along and could have prevented the negative effects of untreated celiac disease.

A few months ago, I had the blood tests for celiac disease done again. Negative. Then I had the biopsy done. Negative. All that was left was the gene test.

I thought I knew what the result would be. But I did it anyway. And what happened next shocked me to my core.

“The celiac gene test came back negative. You do not have HLA-DQ2 or DQ8,” the lab report said.

How is that possible? How can a person have such a strong family history of celiac disease and not have the related gene?

The genetics behind celiac disease

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Thirty to 40 percent of people in the United States have one or both of the genes called HLA-DQ2 or DQ8, which are the ones associated with celiac disease. The National Institutes of Health says only about 3 percent of those with the genes actually get celiac disease.

The HLA (human leukocyte antigen) molecules help decide whether your body will have an immune response. HLA molecules hold onto protein, foreign or not, and show it to a deciding white blood cell, which figures out whether to attack it or let it go, says Daniel Leffler, M.D., director of research at the Celiac Center at Beth Israel Deaconess Medical Center in Boston, Massachusetts, and associate professor of medicine at Harvard University. While the human body has many HLA molecules, the only ones that can bind onto gluten tightly enough to get the immune system excited are DQ2 and DQ8, Leffler says.

Testing negative for the genes rules out celiac disease in virtually all cases, but testing positive does not mean you have celiac disease. A trigger is still needed to activate the disease in your body.

Genetic testing for celiac disease is still uncommon. Leffler says the gene test is done in only about 20 percent of the cases at the Beth Israel Deaconess Celiac Center. But he suspects the percentage of people being genetically tested at a typical gastroenterologist’s office is even lower.

The ins and outs of testing

I didn’t get my family tested for the genes because I thought I would recognize the symptoms of celiac disease if they occurred, based on my familiarity with the disease. But there are other reasons families don’t get the genetic test.

Insurance costs are a big concern. Sometimes the test is covered and sometimes it isn’t. Mine was covered because I was seeing a gastroenterologist. But my daughter who does not have celiac disease was denied coverage for testing because she wasn’t seeing a gastroenterologist.

David Flannery, M.D., medical director of the American College of Medical Genetics and Genomics in Bethesda, Maryland, says there are a few reasons insurance doesn’t cover gene testing. First an insurance plan might not include genetic testing in its coverage.

Second if there is no drug or surgical treatment for the health condition the gene might be connected with, insurance companies may not cover it. And often, Flannery says, smaller labs conducting genetic testing are out of network. “Cost is a barrier,” Flannery says. “It’s becoming a bigger and bigger issue. At some point I see patient advocacy groups getting in on this.”

But there may be an answer for patients who can’t get insurance coverage for the test. If the price of the test is a concern, Leffler says direct-to-consumer swab tests for HLA-DQ2 and DQ8 genes are readily available and reliable. “It might be worth doing yourself,” he says.

Physicians on the front line of patient care can be another barrier if they are not knowledgeable about genetic testing. “That is what I have heard is the biggest issue. You don’t even get to the insurance part. Physicians are just reluctant and don’t know what to do with [genetic testing],” Leffler notes.

Flannery agrees. “Lack of knowledge of non-genetic physicians goes two ways. Some don’t know about genetics, never heard of it, don’t know how to find out about it and are too busy to find out,” he says. “Another way is that the doctors over-test, which may not be necessary.”

Getting a referral to a celiac disease center in your area or state can be the quickest way to get genetic testing through a physician.

While some patients are frustrated that they can’t get tested, others are concerned about having a genetic result on their health record, with its implications at school or work or when getting new health insurance coverage. “Fortunately the GINA [Genetic Information Nondiscrimination Act] law protects that information,” Flannery says. The U.S. Equal Employment Opportunity Commission explains that GINA makes it “…illegal to discriminate against employees or applicants because of genetic information.”

Providing answers for your family

A genetic test does not tell you if you or someone in your family has celiac disease. But it can be an important first step that, if positive, should be followed by blood tests and a biopsy.

In my case getting the test results changed my personal outlook on celiac disease. Before I had the test, I was always looking over my shoulder, wondering if having a baby, hitting menopause or just getting a bad virus would trigger celiac disease.

My negative test result ruled out the possibility of celiac disease, and I no longer have to have periodic blood work to make sure the disease is not developing.

“It is worth knowing if a person is at risk for celiac,” Leffler says. It can be especially important for children with first-degree relatives because it gets them “off the hook” in relationship to celiac disease, he explains. In families with several children it’s likely one or more will be negative, and it can save years of worrying whether they have or will develop the disease.

Meanwhile a positive gene test result could increase awareness of symptoms, eating habits and triggers in children, which are important in catching the disease early. Recent studies show that children who have multiple copies of DQ2 are at higher risk for getting celiac disease. “As a parent, you may be more vigilant with a child who has two copies of DQ2 than a child with one copy of DQ8,” Leffler says.

Also DQ2 is the gene that is shared by those who have celiac disease and Type 1 diabetes. If you have one condition, Leffler says, you may have the other. This may also be true with autoimmune diseases such as autoimmune thyroid disease and Hashimoto’s thyroiditis.

Skipping a generation?

But how can the celiac disease genes seemingly skip me and go to my daughter? Or in another family, how can the gene be nonexistent until celiac disease suddenly pops up in a single family member?

It is not as simple as it seems. HLA-DQ2 is actually four genes, and HLA-DQ8 is two genes. The gene that is handed down to the next generation could impact the likelihood of developing celiac disease.

Both parents can have the genes for celiac disease, and their child can luckily only inherit the part of the genes that aren’t connected with the condition. “This is unlike most genetic disorders. You can have two parents who are negative and a child who is positive and it can bounce around in odd ways for sure,” Leffler says.

If you have the gene and the potential for celiac disease to develop, there isn’t much you can do to prevent it. Recent studies have debunked the theory that timing of gluten introduction and breastfeeding in infants may be ways to keep celiac disease at bay.

Flannery says some people preemptively go on a gluten-free diet. Since the gene does not automatically mean a person will develop celiac disease, this is not generally recommended. The gluten-free diet prevents a definitive diagnosis of celiac disease.    

 Genetic testing for celiac disease can be hard to initiate and costly. But the information you get could help you in the long run. “For family members at risk of celiac [disease] but [who] don’t yet have it, [the test] can be very helpful information,” Leffler says.

At-home genetic tests

You can take a test to determine whether you have the genes for celiac disease with several products designed for home use.

Typically you swab the inside of your cheek and send the swab to the test center, which will return lab results to you or your physician.

These tests will not tell you if you have celiac disease, but will alert you if you have the genes associated with development of the disease. All test companies note that a positive result should be followed up with your physician.

Also tests for the genes are still accurate if you are already on a gluten-free diet. This differs from blood antibody tests that are used to diagnose celiac disease, which may not be accurate if the diet has already been started.

Related articles

Are Bacteria to Blame?

Neurological Symptoms of Celiac

Is the Biopsy Still the Gold Standard for Diagnosing Celiac?

Getting Schooled in Gluten-Free Lunches

You’ll need to plan well in advance to get your child the right food next fall

It’s spring. The flowers are blooming. The kids are going on field trips, to prom, competing in track meets and baseball games and taking their finals.

Even though the only thing you and your children may want to think about is the upcoming summer break, now is the time for parents to investigate a gluten-free school lunch menu for the new school year in the fall.

School districts across the country are making big changes to their gluten-free offerings. Many districts didn’t have any gluten-free options even five years ago. But now they have burgers (with or without a gluten-free bun), pizza, chicken nuggets and more.

This is the best time to find out what your child’s school has to offer. Even if you’ve done some checking in the past and been disappointed with limited choices, it’s worth trying again because of all the improvements in gluten-free school lunch offerings.

If your child was recently diagnosed with celiac disease or gluten sensitivity or is entering a new school in the fall, it’s particularly important to begin doing the legwork this spring. It can take up to six weeks to make arrangements for gluten-free meals. Steps you take now will lead to a smoother lunch experience, especially during that critical first week of school.

 

Getting a gluten-free lunch

The extent to which schools have gluten-free offerings runs the gamut. Some schools do not have a gluten-free menu yet, sometimes because no one has requested it. Others have staff who are fully trained, processes in place to minimize cross-contamination and gluten-free food orders coming in. You will not know what the situation is at your school until you ask.

First go to the school nutrition office for your district. Many parents make the mistake of starting at their child’s school, but that can result in misinformation. If the school cafeteria supervisor hasn’t already had a student with a gluten-free need, they may not know the district makes gluten-free accommodations at other schools. The district nutrition officer typically oversees all cafeterias and is the decision maker.

The U.S. Department of Agriculture (USDA), which oversees school nutrition services, requires basic information from the district nutrition office to get started, says Becky Domokos-Bays, director of school nutrition services for the Alexandria City Public Schools in Alexandria, Va., and vice president-elect for the School Nutrition Association.

“We have to have a letter written by a licensed medical authority that explains the medical condition and what the accommodation has to be,” says Domokos-Bays. “Since celiac disease falls under the Americans with Disabilities Act (ADA), when kids come through we are obligated by law to accommodate.”

The 1990 ADA defines a disability as a “physical or mental impairment that substantially limits one or more major life activities of such individual.” Major life activities include eating, learning, thinking and concentrating and can also affect bodily functions like the immune and digestive systems and bowel, according to the ADA.

A 504 plan, named for a section of law that describes how the ADA applies to public schools, protects students who have conditions that fall under these major life activities, according to the U.S. Department of Education. While a 504 plan is not required for a student to get gluten-free lunches at school, it may be helpful. A 504 plan will get all parties in the school on the same page about accommodating your child’s needs during the school year. Check with your school’s 504 coordinator, counselor or the special education department to start this process.

If your child needs a gluten-free diet for a reason not covered under the ADA, for example gluten sensitivity, more leeway is given to each school district in deciding whether to make lunch accommodations. A USDA guide for school food staff says each school has the discretion to accommodate a dietary allergy or intolerance that is not considered a disability but is medically certified as having special dietary requirements. The added cost of special diets may determine whether a district will allow dietary accommodations for someone not covered by the ADA.

 

The gluten-free lunch experience

Once you’ve determined that your child will get gluten-free lunches, the next step is to ensure that everyone who works with your child’s food is a part of a team aware of his or her needs. In addition to the cafeteria staff, the team can include the school principal, nurse, your child’s teachers and anyone who patrols the lunchroom.

“I like to meet with the parent and the lunch supervisor in May and then turn them over to the supervisor in the fall,” says Esther Motyka, a registered dietitian and site operations and safety manager for child nutrition programs for Anoka-Hennepin Schools in Anoka, Minn. About 50 of the school district’s 39,000 students use the gluten-free menu.

The students select items from the gluten-free menu ahead of time so their lunch is ready when they get to the cafeteria, Motyka says.

School districts usually order all food, including any gluten-free items, pretty far in advance, one of the reasons it’s a good idea to get in touch with the nutrition office before the end of the previous school year. It can take about three weeks to order specialty items and another few weeks for them to be delivered. To limit special orders, districts look for products that will serve a wide variety of students during their food bidding process.

“We try to look at our bids and choose something like a hamburger that can be served to every child,” Domokos-Bays explains.

It’s easy to see how all these steps take time. If you start the process this spring, you’ll be able to get the necessary letter from your physician and give the district enough of a heads-up to order food and supplies, set up a process and train staff (if they haven’t already done so).

If you wait until the very busy open house to bring this up with staff, you will end up scrambling to get the letter in time for school, which, Motyka says, could delay the whole process at the beginning of the year.

 

The big picture

Each year, the number of school districts with a gluten-free lunch menu grows, says Andrea Levario, executive director of the American Celiac Disease Alliance. The ACDA, a national celiac disease advocacy group, has made improved access to gluten-free school lunches one of its priorities.
Levario says schools are getting better at meeting gluten-free needs because parents of children with a medical need are asking for it. That is what Kelly Trouy and her 11-year-old son, Scott, who has celiac disease, did. They live in Frisco, Texas, and he is off to middle school in the fall.

Their district didn’t have a gluten-free menu when Kelly Trouy first asked three years ago. “We tried the school cafeteria first, and there was no level of comfort there. We went to the district and started working with a nutritionist,” Trouy says. It took them about a month to get the food, menu and training all in order. Scott Trouy’s favorite meal is a salad, burger (no bun), Baked Cheetos, bananas and frozen yogurt. The district has 46,000 students and currently serves at least 11 gluten-free students.

It took Shannon Stewart of Coon Rapids, Minn., about three months to set up her 12-year-old daughter Amissa’s gluten-free accommodations. Amissa has a wheat sensitivity and eats gluten free at a school in the Anoka-Hennepin district.

“When we went to the open house, I got Esther Motyka’s name from the lunch supervisor,” Stewart says. Because of some confusion over the physician’s letter required by the USDA, Stewart had to fill out the paperwork twice, which took extra time. Amissa’s gluten-free lunches started in December of 2013. “She can eat pizza at school. It is a dream come true for her,” Stewart says.

But sometimes planning ahead just isn’t in the cards. A gluten-free diagnosis can be made just before kindergarten, which is what happened to 5-year-old Lane Lovre of Brooklyn Park, Minn.

He started with gluten-free lunches right away in one school district, but moved to the Anoka-Hennepin district a few weeks later. Because the district serves so many gluten-free kids, his gluten-free needs were quickly met even though the school he attends hadn’t served a gluten-free student yet.

As districts get used to the idea of catering to gluten-free needs, they are also offering a greater variety of foods. For example, Chesterfield County Public Schools in Virginia has a gluten-free grilled cheese sandwich. The Scarborough School Department in Maine serves gluten-free pancakes as a breakfast alternative. Fargo Public Schools in Fargo, N.D., has gluten-free muffins and English muffins at breakfast as well as gluten-free peanut butter and jelly sandwiches and chicken noodle soup during lunch.

 

Communication is the key

One of the key components to successfully getting a safe gluten-free lunch at school is to have open communication between the parents, school and district. “I feel better knowing if I didn’t get the answer I was looking for with the supervisor at the school, I could take it to the district,” Beth Lovre, Lane’s mother, says.

Domokos-Bays agrees. “Start at the nutrition office, and if you have trouble, then you may just have to go up the chain.” But she also recommends that parents try to be polite and patient during the process.

Parents have very common concerns about daily kitchen operations including food preparation, cross-contamination, staff training and the steps their child needs to take to get their gluten-free lunch, with no mistakes.

“Their biggest concern is, ‘Is my child going to get sick by eating here?’” Domokos-Bays says. Her Virginia district, which serves about a dozen gluten-free students, hears parents’ concerns and helps ease fears by allowing the parents and kids to read labels at any time. Plus, the district purchases separate kitchen supplies such as pans and utensils and washes them separately to reduce the chance of cross-contamination.

Trouy, the Texas mom, recommends building a relationship with a school nurse and having a 504 plan for your child. “[The nurse] will be an advocate. The 504 plan helps open that door for her,” she explains. Domokos-Bays agrees that a 504 plan helps inform all staff regarding the expectations for the gluten-free accommodations.

This spring, Trouy says she plans to notify the nutrition department about her son’s upcoming transition to middle school. She will also ask what needs to be done to get the cafeteria ready, since she is unsure if that school has made gluten-free meals before.

Stewart will do the same when Amissa moves into a new building for middle school next year.

Creating a meal for a gluten-free child can be a challenge for a school, but school nutritionists say it is one they welcome and want to do correctly. With a little patience and planning, the school and the family can see great results.

Amy Leger is family editor for Gluten-Free Living. She also blogs about gluten-free topics at thesavvyceliac.com. Leger is married with two children. Her oldest daughter has celiac disease.

Amy Leger of TheSavvyCeliac.com Shares Her Favorite Tips About Being a Gluten-Free Parent

Amy Leger of TheSavvyCeliac.comEvery Tuesday and Wednesday during the month of May, we’ll be hosting a gluten-free guest blogger from around the web in honor of Celiac Awareness Month. Today we’re hosting the final post in a two-part series from Amy Leger, Family Editor for Gluten-Free Living and owner of TheSavvyCeliac.com. Part two is all about raising a gluten-free child; you can find part one here.

 

This Celiac Disease Awareness Month has me thinking about all the tips I have learned over the years to make feeding my gluten-free daughter much easier.

It was tough in those early days after my daughter Emma’s diagnosis in 2000.  But with a little education and great information from the gluten-free community, life didn’t seem so overwhelming after a while.  As the family editor for Gluten-Free Living and author of my website TheSavvyCeliac.com, I have interviewed a lot of experts.  Here are some of their best tips when it comes to gluten-free kids.

Getting gluten-free accommodations at your child’s school

Esther Motyka is a registered dietitian with the Anoka-Hennepin School District in Minnesota.  We talked about the two things parents should consider when trying to arrange a gluten-free school meal for their child.  “First, give the district nutrition department a heads up as early as possible and second, have patience.  If it is a new gluten-free request for a school, giving us enough time to get all of the pieces together is important;  ordering the food, training staff, getting supplies, and getting a process in place” is important for success.  She also recommended meeting with the staff right before school starts to make sure the student understands the process in getting their gluten-free meal.

Getting gluten-free accommodations at college

Scott Lissner, the ADA coordinator for Ohio State, talked to us about making gluten-free food accommodations at college.  I asked him what parents and students should do to get safe gluten-free options.

Start with the dining hall.  Take a quick look at the website for dining hall and residence halls.  Talk to the dietitian about your needs.  I would go there first.  You’ll get a pretty solid and cooperation from dining services.

If I didn’t see a ‘contact us’ for dining services or I called them and they didn’t understand, I would go to disability services.  They have to have someone designated at college to deal with disabilities.”

Getting help for gluten-free children

Aaron Rakow PhD, Director of Psychological Services for the Division of Gastroenterology, Hepatology and Nutrition at Children’s National in Washington, DC, directs a program to help children learn how to live with celiac disease.  But not every young patient will have access to a program like this.  So how can a parent help their child learn to cope and where do parents find help if it becomes too much for their child to handle?

The child needs to feel like they have a place to go to talk about this and not to be judged. Parents should be available as someone who is always there to listen, especially just after diagnosis.  Check with your child once a week.  How was lunch?  How did the food taste? How was the lunch you brought?” Rakow said.

But if it gets to be too much, how can you find additional help?  Rakow recommended working with a gastroenterologist and a registered dietitian.  But also check with a therapist in cognitive behavioral therapy, preferably with a gastroenterological background.  They can help treat anxiety, depression or a behavior disorder.

Dealing with Bullying and Gluten Free

Some children have trouble dealing with kids who bully them simply because they eat gluten free.  Ritu Verma, MD, is the director of the Celiac Center at Children’s Hospital of Philadelphia (CHOP).  She offered this insight on how to handle bullying among kids.

“I think it depends on each age group.  Children who are in the upper elementary and lower middle school don’t feel comfortable taking it to their teachers.  They need to take it to their parents.

Ask your child, ‘Is someone bothering you about your food?’  You need to ask it this way. Be direct.  Reassure the child it is not his or her fault.”  Teaching the children in your child’s class more about celiac disease or gluten-related disorders could help.  “Older children do much better.  They either decide they won’t hang out with that group of people or they’ll speak up.”

Dealing with celiac disease or a gluten sensitivity can be a challenge at times.  With a little support and some helpful tips like these, hopefully raising a gluten-free child can be a bit easier.

Amy Leger is the family editor for Gluten-Free Living and founder of TheSavvyCeliac.com. Emma, her daughter with celiac disease, is now 16 years old.  They live with their family in Minnesota.  Part One of Amy’s tips on eating, cooking and shopping gluten free, can be found here.

 

Note: The views, opinions and positions expressed by our Celiac Awareness Month guest posters are theirs alone and do not necessarily reflect the opinions of Gluten-Free Living or its staff.

 

Don’t forget about our special month-long subscription offer, where you can receive a one-year subscription to Gluten-Free Living for just $20 — $5 of which will be donated to support celiac research. You’ll also be entered to win a 10-piece cookware set with bonus tools from Swiss Diamond. Subscribe today.

Amy Leger of TheSavvyCeliac.com Shares Her Favorite Tips on Eating and Cooking Gluten Free

savvy-celiacEvery Tuesday and Wednesday during the month of May, we’ll be hosting a gluten-free guest blogger from around the web in honor of Celiac Awareness Month. Kicking things off today is Amy Leger, Family Editor for Gluten-Free Living and owner of TheSavvyCeliac.com. This is part one in a two-part series in which Leger will share her favorite tips that learned from years of interviewing gluten-free experts. Part one is about cooking and eating gluten free; check back later in the month for part two, which is all about gluten-free kids and families.

 

When my daughter was diagnosed with celiac disease 15 years ago (this month) I was in shock. I wasn’t a great cook and I most certainly didn’t pay a lot of attention to ingredients in the food that we bought. Plus, in 2000, there was little information available for folks with celiac disease, and the people who love and care for them.

Any educated hints and tips I could get were always highly welcomed.

While I am the Family Editor for Gluten-Free Living, I also I write for my website TheSavvyCeliac.com. And during the last several years I have had the pleasure of interviewing a lot of people who have a lot of great advice. Here is part one of some tips from the experts I thought you might find helpful as well!

 

Fueling your inner gluten-free athlete

Peter Bronski is a gluten-free blogger at NoGluten-Noproblem.com, an author and endurance athlete. When I chatted with him about his book The Gluten-Free Edge, I asked Bronski what two gluten-free foods he thinks an active person should add to their diet to make it healthier. Here’s what he had to say:

“Incorporating sweet potatoes into the diet for an athlete is a great option. They have a lower glycemic index than white potatoes and they are an excellent source of carbohydrates for athletes who want the carb-load. Secondly, any high-protein sources [from] wherever you choose to get your protein, whether it’s red meat [such as ] bison or nonmeat sources of protein; the iron is really an important component for athletic performance.”

 

And what should gluten-free athletes eliminate? “Anything that is made of highly-refined gluten-free starches and has a lot of empty calories in it,” Bronski said.

 

Feeding kids healthy food

Amie Valpone is gluten free and is the founder of The Healthy Apple. We talked in early 2014 about eating healthy while maintaining a gluten-free diet. Specifically, I wondered about recommendations to help our gluten-free children eat healthier when we are on the go.

“I tell parents to keep it simple,” Valpone said. “Buy three new root vegetables a week, cut them up into fries, so they look like McDonald’s fries. Toss them into your oven with cinnamon and sea salt, sweeten them with maple syrup, or put on chili powder, pepper and maybe balsamic vinegar. Have those in your fridge all week for your kids to enjoy, maybe with guacamole, salsa or hummus. This way when they come home from school they won’t reach for something out of a box.”

 

 

Saving money on gluten-free food

Ten Dollar Dinners host Melissa d’Arabian has a daughter with a gluten sensitivity. While she is very busy working on her Food Network program, she makes time to cook food for her family and save a bundle at the grocery store. I interviewed her after she wrote her book Supermarket Healthy last year and asked if it was even possible for gluten-free folks to save money when they shop.

Start your shopping in the produce aisle because if you stick to in-season produce it’s almost impossible to break the bank. We’re so trained to think that more money equals something that’s better, the produce aisle is the exact opposite. When there is an overstock at the factory, which is Mother Nature in the produce aisle, prices go down; so low prices equal the best food. Stick with food that’s naturally gluten free and you absolutely can stick to a budget while you’re being gluten free.”

 

Creating moisture in gluten-free dough

Cookbook authors and gluten-free eaters Jessie and Jillian Legasse spoke at the 2014 Gluten-Free Living Conference and offered some other great tips about adding moisture to your recipe.They say to let your gluten-free dough rest at least 30 minutes to as long as overnight because gluten-free flour doesn’t absorb moisture as quickly as regular flour.

 

 

With these quick tips, you’ll be able to eat healthier and make better and less expensive gluten-free food.

Amy Leger is the family editor for Gluten-Free Living and has her own website TheSavvyCeliac.com. She lives at home in Minneapolis with her husband and two children, one of whom has celiac disease.

Note: The views, opinions and positions expressed by our Celiac Awareness Month guest posters are theirs alone and do not necessarily reflect the opinions of Gluten-Free Living or its staff.

 

Don’t forget about our special month-long subscription offer, where you can receive a one-year subscription to Gluten-Free Living for just $20 — $5 of which will be donated to support celiac research. You’ll also be entered to win a 10-piece cookware set with bonus tools from Swiss Diamond. Subscribe today.

Gluten-Free in the Media Spotlight: Does That Glare Help or Hurt?

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Amy Levy (left) and Alice Bast (right)

It seems everyone is talking about the gluten-free diet, from Consumer Reports to the New York Times, the Super Bowl to South Park.

A NASCAR pregame Super Bowl commercial poked fun by proclaiming, “When our idea of danger is eating gluten, there’s trouble afoot.” Jimmy Kimmel Live taped a bit in which people on the street said they were on the diet. Kimmel’s audience roared when not one person shown in the clip knew what gluten was.

How does this kind of attention affect the gluten-free world? Is there no such thing as bad publicity or has media coverage gone overboard?

Gluten-Free Living recently started a conversation on the topic between two leading gluten-free media experts. Amy Levy offers gluten-free marketing services through her Los Angeles firm, Amy Levy Public Relations. Levy’s 7-year-old daughter has celiac disease, and Levy follows the gluten-free diet. Her gluten-free clients include restaurants, food makers, authors and medical professionals. “We work to expose gluten-free products to consumers, influencers and tastemakers,” she says.

Alice Bast aims to increase public awareness about celiac disease and gluten sensitivity in her role as president and chief executive officer of the National Foundation for Celiac Awareness. She’s a recognized expert who is often quoted in mainstream media stories about the gluten-free diet and lifestyle and is a contributor to HuffingtonPost.com.

We asked Levy and Bast to dissect the way the media attention is affecting the gluten-free community as a whole and those who follow the diet for medical reasons in particular.

 

Amy Leger: Not long ago most people hadn’t even heard about  gluten. Now major media outlets are tackling the subject frequently.How has gluten-free content changed from then until now?

Alice Bast: About 10 years ago you didn’t hear anybody in the media talking about gluten free. Now what we are seeing is that while it’s almost open season to talk about the gluten-free diet, celiac disease and other gluten-related disorders are becoming largely invisible. We are excited that gluten free is being mentioned in the media. We are happy for the availability and affordability in the supermarkets that comes with its popularity. But tune into popular culture, and it’s now OK to make fun of people who are gluten free. The conversation shifted from the desired health benefits to a source of ridicule in some of the media.

Amy Levy: I agree with Alice. People were not talking about gluten free 10 years ago. And people with celiac disease were hard pressed to find choices. Mintel, the research company, has been leading the way with consumer research. Back in October 2013, they started to say that sales in gluten-free foods were estimated to reach $10.5 billion, and people were following a gluten-free diet for other reasons than gluten sensitivity. Sixty-five percent thought it was healthier. We also definitely know people thought they would lose weight even though gluten-free food often has extra sugar and fat to help it taste better.

As of last August the [U.S. Food and Drug Administration’s] gluten-free labeling rule became official and labeling foods gluten free became a national discussion. Consumers took note. It was not the celiac community that was talking about gluten free food as much as it was everyone else.

I think the media making fun of people who have celiac disease or making fun of people who follow a gluten-free diet brings the subject to the forefront. We can be insulted, and we can roll our eyes, and we can criticize Super Bowl commercials and be upset about South Park. But we have to admit the more the media talks about gluten free and the more companies that put their products on the shelves, the better it is for us.

Amy Leger: Would you agree Alice? Is any publicity good publicity for gluten free?

Alice Bast: Amy is a public relations expert. As she was saying, any publicity is publicity, good or bad. The burden of celiac disease is tough. Right now when gluten free is covered in the media, they give celiac disease a one-liner like “We know celiac is out there … but” … and then the gluten-free diet gets all of the attention.

So we need to look at how we regain attention for celiac disease and gluten sensitivity and raise research dollars. Our quality of life has drastically changed. Twenty-one years ago I ordered my food through support groups and got it from Canada. Now you walk through supermarkets, and gluten-free food is available and affordable. When I meet with chefs and even lunch ladies from schools, they are confused. They don’t understand how serious cross contact with gluten is. They get very frustrated because they are hearing so much in popular media about gluten free and weight loss. The seriousness of celiac disease gets discounted.

Amy Levy: There was an article in the New York Times in June of 2014 saying if you’re not gluten free, you likely know someone who is … and that this style of eating has become a way of life for many and a national punchline for others.

For someone who has celiac disease, the gluten-free diet is a lifelong prescription. Yes, there are people who are losing weight, people who have psoriasis, headaches and depression who feel the gluten-free diet will drastically change their lives. But the only people who really need it are people with celiac disease and gluten sensitivity.

But I appreciate the conversation because Alice, for example, couldn’t find food 20 years ago, and now she can find it.

Alice Bast: Right.

Amy Leger: Is there a difference between making fun of the gluten-free fad and making fun of celiac disease?

Amy Levy: There is this under-their-breath thing where they say, “All these people out there are eating gluten free and they don’t know what in the hell they are talking about… Of course 1 percent of the population has celiac disease, and they need to do gluten free … but everybody else …” They sort of mumble that there are people who need it.

Is this a fad diet? The fact is diets come and go … but I can understand that people feel that they are being made fun of. I do. It’s insulting and it’s hurtful. When someone says they have ovarian cancer or prostate cancer, and the doctor says they can’t eat processed foods and they are eating organic chicken, wild salmon and organic fruit … do you make fun of them? No.

But because gluten free is this thing that everyone’s doing, it has become mainstream, and that’s why people are making fun of it.

But I’ll reiterate I’m glad it’s putting more gluten-free options on store shelves.

Alice Bast: This is what I remind people.  We work with people where they are. They don’t realize 20 years ago gluten free wasn’t mainstream. When I started the foundation 11 years ago, one of our goals was to work with making gluten free mainstream.

Amy Levy: You did it. You won.

Alice Bast: Yes. And part of it was working with Wal-Mart, making sure gluten-free foods are available and affordable and all these brands are on store shelves.

But I was surprised recently that Joy Behar [comedian and former host of The View] openly started questioning whether celiac disease was a serious genetic autoimmune disease and saying if it was, there would be a foundation looking for a cure.

Well, P.S., there is a foundation looking for a cure. So that’s when we look at the media and try to turn that conversation. We have to make sure our voices are being heard. Recently we asked our community what happens when you have cross-contamination with gluten. In a very short period, 900 people commented. It is almost like we are apologizing. “I really have celiac disease, take me seriously, it could lead to lymphoma.”

You hear these conversations because the media is minimizing the medical need for a gluten-free diet. Many people are just trying the diet, and then they feel better, and they are not getting tested. They are gluten free but they [are not diagnosed with celiac disease].

So people may be on the gluten-free diet and not taking it seriously. They may not realize there are long-term health consequences. But that’s not sexy. We have to get the medicalization of the gluten-free diet in the news as well.

Amy Levy: I wish there could be a sign in the grocery store that says before you buy this gluten-free product, take a simple blood test. If it shows you have celiac disease, you are doing the right thing by eating gluten free.

Alice Bast: I would love to have a celebrity to talk about celiac disease. In the beginning they weren’t so keen to call out that they had it.

Amy Levy: Zooey Deschanel talks about being gluten free. Chelsea Clinton had a gluten-free wedding cake.

Amy Leger: 2014 was a rough year for gluten in the media … and 2015 isn’t shaping up to be much better. What are your opinions about these gluten-free moments in the media? First the NASCAR commercial on Super Bowl Sunday?

Alice Bast: I was pretty upset when I heard about the ad. While there are a lot of people out there trying the gluten-free diet to lose weight or for some other perceived health benefit, there are lots of others who are just hoping to find the answer to their ailments and feel better.

Every time someone makes fun of the gluten-free diet, people take those of us who need gluten free less seriously and that can be dangerous for ourcommunity because the burden of the disease is so onerous.

In general I think it is healthy for people to take a step back and laugh at themselves as a way of coping with something that might be difficult. The difference here is that the laughter at the community’s expense is making everyday life more challenging.

Amy Levy: The fact that the NASCAR ad was so irresponsible and insensitive to suggest that someone strong cannot possibly be gluten free was offensive. But again, I am glad our plight and language was seen by more viewers than any television broadcast in history.

Amy Leger: Jimmy Kimmel’s “What is Gluten” segment?

Amy Levy: I am a fan of Jimmy Kimmel. While I am disappointed that he is misinformed about celiac disease and that a life-long gluten-free diet is prescribed by doctors unanimously, I see that it has become a bit of a fad that he sees worthy of taking a shot at. The fact that people he interviewed who are on a gluten-free diet by choice and don’t know why they are doing it makes it ripe for satire.

Alice Bast: I have mixed emotions on this one. I appreciate the end result of the video—some people eating gluten free don’t even know what gluten itself is. That definitely drives home the point that for many people gluten free is just a passing trend.

Unfortunately the video doesn’t really help out people with celiac or gluten sensitivity. It evoked some laughs, but it doesn’t show the other side that there are people who need gluten-free options.

Amy Leger: South Park gluten-free episode?

Alice Bast: The show offends everyone so it’s kind of expected from this sort of show as opposed to a news outlet. Frankly our community had a good laugh about the episode.

Most of the comments shared on our Facebook page about the episode were positive. South Park is outlandish in general, and our community didn’t seem to take the message to heart.

Amy Levy: South Park has historically been an “equal-opportunity offender.” The celiac community might see it as an “honor” that [the show’s producers] think enough people know what gluten free is that they can do a show on it.

Amy Leger: Coverage of the “gluten sensitivity isn’t real” study?

Amy Levy: This is relatively serious. Peter Gibson, M.D., of Monash University in Australia retracts his earlier study and says a lot of gluten sensitivity is psychological. But one study does not a case make. We have Joseph Murray, M.D., of the Mayo Clinic, Melinda Dennis, R.D., of Beth Israel Deaconess Medical Center, Stefano Guandalini, M.D., of the University of Chicago Celiac Disease Center, and Alessio Fasano, M.D., of the Center for Celiac Research and Treatment at MassGeneral Hospital for Children, who all think gluten sensitivity is real, and they are doing research on it. We have to get their studies better publicized to refute the naysayers.

Alice Bast: I wish that the headlines were not so cut-and-dry. The study did not say gluten sensitivity isn’t real. It simply said there could be more to it than just gluten. That is important information for people to have, especially those who are strictly gluten free but still having symptoms.

The other issue here is that many people don’t read past the headline. With brazen headlines claiming “gluten sensitivity isn’t real,” you create so many scenarios in which people see it, take it for fact and don’t read any further. It makes it that much harder for people with gluten sensitivity to be taken seriously in their day-to-day lives.

Amy Leger: So how do we change the conversation to be more constructive?

Amy Levy: The real story that gluten-free diets are a medical necessity for people with celiac disease has to come out more forcefully.The messaging needs to be changed. We need our lifestyle to stop being a joke.

Eating gluten free is not Botox. Eating gluten free is not teeth whitening, liposuction or breast implants. I live in Los Angeles. We have a lot of smoothies, wheat grass, Botox, fake eyelashes out here. Gluten free is not that.

Alice Bast: We have to take the message back. It is up to us to do that. We need to turn our frustrations into actions. Education is a huge part of it. The only way we can get the word out there is by rising above the noise of the gluten-free diet and having the funding to keep putting celiac disease and gluten sensitivity back in the spotlight.

We need to be more vocal about our needs and why we have those needs. For example people should tell a restaurant if they got sick from a gluten-free meal, but so many don’t follow up with the restaurant to let them know that mistakes were made. To me that is a huge missed opportunity. We’re not going to change the conversation if we don’t speak up.

Many people have suggested running television commercials. I would love to be able to put the right messaging out to millions of people at one time. As a nonprofit it is hard to compete with fad messages that are put out by those with bigger pocketbooks. We rely on community support—including gluten-free food manufacturers. If we could crowdsource more funds we could really continue to make a big impact.

 

Amy Leger, Gluten-Free Living family editor, frequently interviews those who are shaping the future of the gluten-free community. For the record, she did laugh at South Park, but was a little heartbroken by the Jimmy Kimmel video because of the negative perspective of the gluten-free diet it fed into.

 

Going on a Mission Trip When Your Family Is Gluten-Free

It is one thing to take a family trip and ensure it has safe gluten-free options, but it is something altogether different when the family “vacation” is actually a mission trip to Haiti.

My family traveled to Haiti this spring, and since my daughter Emma has celiac disease, I spent the months leading up to it investigating whether the organization we were working with could create gluten-free meals. The biggest worry was that I would be told that preparing gluten-free food would not be a problem, only to get there and find that wasn’t the case.

My experience showed you don’t have to rule out trips to more underdeveloped parts of the world for a mission trip or otherwise. But you do need to start planning early to have a successful adventure.

 

Gluten free in Haiti

gf-mission-emma

Preparation for our trip was more difficult for me than actually going. We went through World Wide Village (WWV), an organization based in St. Paul, Minnesota, which arranges travel only to Haiti. The trip was family-oriented, and my husband, Joel; our 12-year-old daughter Grace; 15-year-old Emma; and I all went.

I was concerned about going to a Third World country and finding that Emma would not have much to eat because of limited availability of gluten-free options. I also worried that if WWV couldn’t produce a gluten-free meal, I would have to stay back from the daily mission work that was the purpose of the trip and cook for her.

When we contacted Pat Mortenson, event director, she said that, while the organization had accommodated vegetarian and vegan meals as well as some food allergies, our gluten-free request presented challenges. “We had some doubt that our Haitian staff would understand the complexities of the request, mainly because our American staff did not fully understand the issues,” she explained.

Months in advance, I met with Mortenson and her husband, Randy, who co-direct WWV. We went over my concerns and the basics of a gluten-free diet, cross-contamination and the critical role the diet plays for those who have celiac disease, including Emma. They said they would work on a menu. It took awhile, and I had a little angst in the process, but the menu came together about two weeks before our trip.

“Once we explained the reasons for the request — and especially that it would affect the health and comfort of a child — the staff in Haiti was very happy to accommodate,” Pat Mortenson said. “They took it upon themselves to come in on their day off to practice a few recipes using ingredients alternative to wheat.”

While in Haiti we traveled daily from the WWV guesthouse 90 minutes one way to the small town of Williamson. There we helped build and paint houses, surveyed land, poured concrete and built relationships with the children.

All that work left us famished. Each morning and evening we had a wonderful gluten-free meal waiting for us: eggs, bacon and potatoes for breakfast, and dinners that included ingredients like goat meat, eggplant, hamburger, potatoes, ham and plantains. I’d also provided gluten-free lasagna noodles and flour. Our entire team agreed to be gluten free all week, a decision that helped eliminate cross-contamination.

In the future, Mortenson said, all the teams working through WWV during a given week would have to agree to be gluten free in order for accommodations to be made. “There are not separate cooking utensils available to prepare separate dishes. There would be a high risk of cross-contamination if meals containing gluten were prepared alongside the gluten-free meals,” she said. For us, in the end, every meal was gluten free, and we had no problems on our trip.

 

Travel with other groups

While we stayed and ate at the guesthouse where cooks prepared our food, Rachel Martin, a gluten-free mom from St. Michael, Minnesota, ate and lived in local villages during her 2013 Haiti trip through Praying Pelican Missions. As a result, she cooked with the women in the village and had to avoid the bread that was part of their meals.

“We would have boiled eggs for breakfast, fruit and bread,” Martin said. She also ate other gluten-free foods, including fried plantains, rice with vegetables and shrimp. Between those foods and extras Martin brought with her, she had enough to eat. She said the grocery stores had a lot of the same gluten-containing processed foods as those in the United States, but in the villages more natural food was used.

Fellowship of Catholic University Students (FOCUS), based in Golden, Colorado, organizes domestic and international mission trips for young adults. Meghan McCartney, director of staff care and development, has celiac disease and has gone on several trips, including her first to New Orleans after Hurricane Katrina.

McCartney recommended starting with a domestic trip. When she went to New Orleans, she packed food for herself and worked with the food that was provided. She said being in the United States was reassuring because she knew she could go to the local supermarket if she had to. “I knew I had an out,” she explained.

FOCUS trip participants stay in host homes. As a result, the hosts cook for the guests and make decisions about what is served and how it is prepared. McCartney said trips to Mexico and Central America would be good choices for gluten-free international volunteers because foods in those countries are not as wheat focused. Corn tortillas are very common. She said she has eaten gluten free on trips to Spain, Ireland, Italy, Israel, Dominican Republic and Honduras.

Despite the challenges of staying with host families, McCartney said she was able to manage. During one trip, she avoided the pastry on the table but ate the corn tortillas and raved about them to the host. She also learned how to say words like “flour” and “wheat” in the native language so she could consult with the family.

Experience Missions, based in Washington state, has both domestic and international trips. When given enough notice, the organization said it can get the supplies to make gluten-free and other specialized meals.

Other organizations, including YouthWorks and Adventures in Missions both recommend bringing your own gluten-free food. Contact them to see what suggestions they have regarding their food and your gluten-free needs.

Going on a mission trip is supposed to be fun, adventurous and fulfilling. With a little extra planning, it can be all of those things even if you are gluten free.

gf-mission-craft

Tips for making a mission trip

Here are some steps to help ensure that you can eat safely while traveling to help out in areas where there is a need but gluten-free options might be limited:

  • Work with a reputable organization. The organization will oversee your entire experience: the work you do, your safety, your food and recreational activities. Talk with organization about its gluten-free accommodations and explain why you require the diet.
  • Plan ahead. The more time you give an organization to figure out gluten-free meals, the better. Begin setting up your trip 9 to 12 months in advance.
  • Discuss a menu. A menu will provide everyone with a game plan. You will know what extras to pack to supplement meals. Still, you many need to be flexible once you arrive if one gluten-free option has to be switched to another. Some organizations may not be able to provide a menu, but it’s good to always ask and open the discussion about meal planning.
  • Pack extra food. This is necessary to cover meals that may not be provided, lunch for example, and as an emergency backup. Bring healthy, shelf-stable snacks. Don’t bring chocolate to warm destinations because it melts, and refrigeration may not be readily available.
  • Learn some key words in the native language. Triumph Dining, triumphdining.com, has gluten-free dining cards in many languages.
  • Make sure medicines needed for the trip are gluten free. For example, we needed malaria pills for Haiti. The pharmacist confirmed the pills he was giving Emma were gluten free.

 

 

Food is not the only consideration

A trip to a more remote area is a lot different from a typical family vacation. This impacts more than just issues with gluten-free food. Part of your planning should be an evaluation of whether your children are ready for this kind of experience.

The trip my family took was specifically family friendly and not as labor intensive as some mission trips.

But we still needed to manage our daughters’ expectations a bit:

  1. They would eat the food that was put in front of them, even if they didn’t like it (or thought they wouldn’t like it). For Emma, this rule applied as long as the meal was gluten free.
  2. They worked on the task they were given. No whining, griping or pouting at the work site.
  3. Under no circumstances could they leave the group or wander off.
  4. They might see some disturbing or surprising things: naked children, families with very few resources, homes that look like small shacks and garbage on the street.

If you don’t think your child is ready for these rules or others you set, then you may need to delay your trip until they are.

What to pack

Here is a suggested list of gluten-free foods to take when traveling to remote locations:

➥  Beef jerky

➥  Almonds, pistachios, peanuts

➥  Snack/nut bars (no chocolate for trips to warm climates)

➥  Fruit leathers

➥  Pretzels or crackers

➥  Bread (and toaster bags)

➥  Cereal

➥  Glutino Toaster Pastries

➥  Go Picnic meals

 

Amy Leger is the family editor for Gluten-Free Living. Her family went to Haiti for one week last March. She also has a website, thesavvyceliac.com. She lives in Minneapolis with her family.

Spring Cleaning Your Diet

Amie Valpone, an advocate of eating whole foods, on how to be gluten free and healthy

It’s hard to find anyone who is not trying to eat at least a little healthier these days. Healthy eating messages bombard us from all directions. We can find calorie counts and fat grams for foods everywhere from the package label to the fast food restaurant menu board. Print and social media urge us to stick to natural whole foods based on studies that show these are the best bets. Still, healthy eating can be a struggle because there’s a pull in the opposite direction from processed food that makes our busy lives easier and tempts us by tapping into our cravings. And there are some special challenges if you are gluten free.

We asked Amie Valpone, founder of the The Healthy Apple website, to talk about healthy gluten-free eating and how we can make healthy changes in our diet. Valpone, 31, lives in New York City and previously worked in marketing at Vogue and Ralph Lauren. She eventually left corporate America to become an expert in “clean eating,” advocating nutrient-rich, organic foods that don’t contain growth hormones, antibiotics or pesticides.

Valpone has been gluten free for a decade, and continuing health issues prompted her to also go dairy, soy, corn and sugar free three years ago. While Valpone is not trying to make everyone eat exactly like her, as a chef, recipe creator and whole living proponent, she pushes the idea that we all can eat healthier. And she says it’s not as hard as we think.

Amy Leger: How healthy do you think the average gluten-free diet is?

Amie Valpone: If you are eating one-ingredient foods, the average gluten-free diet is healthy because you’re not eating processed foods out of a box.

AL: What do you mean by one-ingredient foods?

AV: They are foods such as an organic egg or organic kale. There are no additives in these foods, no sugar or chemicals added. Nothing. Just the actual food.

AL: Do you think most people on the gluten-free diet eat mainly one-ingredient foods or are most relying on processed products?

AV: I think it’s mixed. I think there are people who eat one-ingredient foods and eat very clean. And then there are others who eat a whole lot of processed gluten-free foods, which is fine every now and again. Kids like cookies. You have to treat yourself every once in a while. But I think as long as you have a good balance of whole foods and eating them as much as you can, you’re good to go.

AL: Overall, what is your definition of a healthy gluten-free diet?

AV: It’s the basics: some kind of lean organic protein, gluten-free whole grains, organic vegetables, getting enough fiber and then definitely a healthy fat, like an avocado, nuts, seeds, flax oil.

AL: Can you give us some specific examples?

AV: Whole grains include quinoa, amaranth and teff. Vegetables include leafy greens like chard, kale, collard greens, arugula or spinach. Not iceberg lettuce. A lean protein can be a chicken breast, turkey or a low-mercury fish like shrimp or tilapia.

AL: The availability and selection of gluten-free products has really changed over the last four to five years. Eating gluten free is a lot easier now. How do you think these new products have helped or hindered a healthy gluten-free lifestyle?

AV: I started the gluten-free diet in college more than 10 years ago. Now, you know, it’s kind of crazy how much the product selection has come up. There was no gluten-free bread back then … there was nothing. Now my favorite breads are Udi’s and Rudi’s. They are both doing a really good job with breads, tortillas and rolls. Kind Bar is one of my favorites. They just came out with gluten-free granola and gluten-free bars. And the company that makes CrunchMaster Crackers, they are amazing. People who aren’t even gluten free love them. Sabra hummus is one of my favorite brands because it’s a little snack pack. So Delicious has a line of almond milk and coconut milk and ice cream. I think the brand is amazingly clean and not full of processed ingredients.

There are great, great products out there that are gluten free, but I think you just have to go through with a fine-toothed comb and see what’s in everything. Some of the stuff that is out there, like some of the cookies, cupcakes and bars, are just like processed sawdust. And they have all these chemicals in them.

AL: Feeding gluten-free children can get even more difficult as they get older with birthday parties, school sports and activities, and nights out with friends. What can be done to help them make healthy food choices?

AV: I tell parents to keep it simple. You take a few ingredients: carrots, zucchini, endive, broccoli, cauliflower, sweet potatoes and maybe beets. You buy three new root vegetables a week, cut them up into fries, so they look like McDonald’s fries. Toss them into your oven with cinnamon and sea salt, sweeten them with maple syrup or put on chili powder, pepper and maybe balsamic vinegar. Have those in your fridge all week for your kids to enjoy, maybe with guacamole, salsa or hummus. This way when they come home from school they won’t reach for something out of a box.

AL: But what role does education play in all this? For example, my daughter is in high school. I can make all the healthy gluten-free snacks for her that I want, but on a Friday night she may go straight to a friend’s house after school and be there for 24 hours. So she wouldn’t be eating my healthy snacks. How can we empower and educate our kids so they can make healthy choices when they are away from home?

Amie Valpone
Amie Valpone

AV: Explain to the kids that there are certain foods that come from a package. But keep it simple, ask them, does it grow in the ground? Or did it come from animals? The healthiest foods are not going to come out of a box.

AL: How can we indulge wisely without completely going off the health wagon?

AV: First, everyone should be eating a healthy breakfast. Eating healthy and … not starving. Other than that, let’s say your mom is making you your favorite gluten-free lasagna from when you were younger. It may not be the healthiest of things, but treat yourself to it. If you’re on vacation or your honeymoon or at a wedding, treat yourself a little bit, just don’t have it every day.

If you’re having a bad day, I always say treat yourself to a manicure or a pedicure or something not related to food. But sometimes other things don’t work. Sometimes we need some food. Figure out, for example, “If I get a craving in the middle of the night, what can I have? Oh, I love Enjoy Life Foods Dark Chocolate. I am going to keep a bag of it in the freezer with a bag of almonds, and when I have a craving or I want something sweet after dinner, instead of reaching for a box of processed gluten-free cookies, I am going to have some dark chocolate and almonds.”

AL: What is your favorite indulgence or splurge?

AV: I mix together organic almonds, organic coconut flakes, vegan dark chocolate chips and cinnamon for my treat.

AL: If the idea of changing everything about your gluten-free diet to make it healthier seems overwhelming, what are some suggestions for making some simple changes now?

AV: When you go to the food store, every week, just make sure you’re buying a vegetable for every day. Even if it’s something simple like arugula. It is filled with so many different vitamins. Just toss it in with your salad.

Or go to the store and buy a bag of raw almonds. You don’t have to abandon your comfort foods either. If you love mashed potatoes, great! Go get some sweet potatoes. If you’re fond of fries or mashed potatoes you can make them for yourself from the sweet potatoes, which are better for you. You don’t have to eat broccoli every day of the week. You’re going to go nuts! We all need to treat ourselves to a thing we enjoy. You like steak? Great! Go find a nice steak with a side of sweet potatoes or maybe sautéed or roasted mushrooms. It can even be frozen vegetables.

AL: So frozen vegetables are okay?

AV: Some people say frozen vegetables or fruit are unhealthy, but you know frozen is as good as fresh because they are flash frozen at peak. Whole Foods Market even has frozen quinoa. It’s so easy. You just take it out of the freezer and put it in a pot and serve it. It’s done!

AL: Produce can go bad so quickly. So it’s good to know frozen vegetables are good, too.

AV: If you find your fresh produce or other foods going bad, just stick them in a freezer bag and freeze it. Spinach, quinoa, gluten-free oatmeal, you can have pretty much anything in the freezer. Even Applegate turkey. I buy it in the deli packs and when I am travelling I just stick them in the freezer and eat them later.

AL: One of the biggest challenges with living gluten free is creating tasty recipes. How do you develop a healthy gluten-free recipe or incorporate healthy substitutions to a recipe and keep it from being a flop?

AV: You can always use unsweetened applesauce for all or most of the oil called for in a recipe. Pumpkin puree is also a good substitute for oil. Both are healthier options.

But overall, I would say don’t experiment with one-ingredient grains, like coconut or almond flour, unless you really know what you are doing. They are so expensive. And you can’t really bake a cake out of just almond flour. Well, actually you can, but you have to know what you are doing and it is very complicated. My best advice is to keep things simple. Stick with a gluten-free, all-purpose flour if you’re baking. Cooking doesn’t need to be complicated.

AL: To help make cooking healthier and an easier job, what is your favorite gadget in the kitchen?

AV: Absolutely my food processor. I have owned about 15 food processors, I am not kidding. When I was sick I could not digest food and I had to eat food made in a food processor for about five years. I have tried every food processor out there. The only one I like is KitchenAid™. It is so easy to clean and it is lightweight.

AL: Why would it be worth someone’s investment?

AV: It makes things so easy. Just take some poached chicken, add some basil, strawberries, salt and pepper, put it all into the food processor and you have a pâté for the week.

AL: What are some common mistakes people make when trying to make healthy gluten-free choices?

AV: Buying processed foods and not looking at the ingredients and not knowing what those ingredients mean. A lot of foods are genetically modified. A lot of food is filled with fillers and dyes. It might be gluten free, dairy free, soy free, sugar free, but what else is in it?

AL: What are two things everyone can do right now to make our gluten-free diet healthier?

AV: Cut down on processed foods and clean up your snacks. Instead of just buying snack food, eat something that you can recognize as one ingredient. If you sat down and made yourself a list of one-ingredient foods it would probably be about 20 pages long. It’s more than people think because it is every fruit, nut, vegetable, seed, meat … it’s insane!

AL: What are the two foods we should remove from our diets?

AV: Processed foods and non-organic foods. You should definitely be eating organic because if you’re not, you’re eating growth hormones and antibiotics.

AL: Organic foods can be expensive. What if someone has to pick their battles and only pick a few organic ingredients? Which ones would you recommend?

AV: You should buy organic foods from the “dirty dozen”. It is a list of the dirtiest fruits and vegetables. (See below.)

Amy Leger is Gluten-Free Living’s family editor, and she also frequently does Q&A interviews for the magazine. Her last interview was with Congresswoman Nita Lowey, a sponsor of the gluten-free labeling law.

Organic Options

The dirty dozen, the 12 foods with the highest level of pesticide residue. Consider buying organic.

  • Peaches
  • Apples
  • Sweet bell peppers
  • Celery
  • Nectarines
  • Strawberries
  • Cherries
  • Pears
  • Grapes (imported)
  • Spinach
  • Lettuce
  • Potatoes

The 12 foods least likely to be contaminated by pesticide. Buying organic is a lower priority.

  • Onions
  • Avocado
  • Sweet corn (frozen)
  • Pineapples
  • Mango
  • Asparagus
  • Sweet peas (frozen)
  • Kiwi fruit
  • Bananas
  • Cabbage
  • Broccoli
  • Papaya

Amie’s Odd & Ends

Amie Valpone, who has a busy website (thehealthyapple.com), Facebook and Twitter accounts, says new ideas for healthy gluten-free eating are always “sprouting up.” She keeps a running list of new thoughts about healthier habits and alternatives, and calls them Odds & Ends. Here is a sample:

• Make a batch of quinoa, black rice or gluten-free oats on Sunday night to use throughout the entire week.

• Try making homemade “breadcrumbs” with nuts; use chia seeds and flax seeds, etc., for added nutrients.

• Use lemon, lime, grapefruit and orange zest to add flavor to desserts or roasted veggies.

• A little sea salt and freshly ground white pepper add flavor; use a pepper mill. It’s stronger in both aroma and flavor.

• Revive tired leafy greens in an ice bath to give a cold shock to their system.

• Use salted water when blanching veggies to unmask their full flavor and enhance their color.

• Add fresh woody herbs such as rosemary and thyme to infuse a dish at the beginning of the cooking process.

The story behind Jules Shepard’s new gluten-free company

In the gluten-free world it is easy to become brand loyal.  When you find a product you like, you stick with it. Jules Gluten Free Flour is a popular multi-purpose mix to use in daily baking.  Not only do customers like Jules Shepard’s mixes, books and newsletter, but they like her.

Shepard founded Jules Gluten Free, and has been very involved in the community, speaking at events, sending out recipes and making herself available via social media.  She also helped create the largest gluten-free cake for the 1 in 133 campaign which helped re-energize the community and the Food and Drug Administration about the gluten-free labeling rule in 2011.

But how things change. Now, Shepard is no longer with the company that bears her name and has started a new company called gfJules that will sell her products.

What happened and what’s next?

Shepard’s History
Shepard launched Nearly Normal Cooking and published a book in 2006.  Then in 2007, she perfected a flour blend.  “It took a really long time to get the formula right, much more difficult than I ever thought,” Shepard said during an interview this month at the Gluten-Free Living Conference, in Orlando, Fla.

“I was doing everything myself, customer service, etc., but I didn’t have any money to pay someone to help me,” explained Shepard.  In 2008, Tom Andrews, the father of her intern, became the company’s CEO.  He and his partners offered to buy into the company through sweat equity, which is an ownership interest created as a result of work done for the company. Anderson and his partners owned 50 percent as did Shepard.

After the new partners came on, the name of the company was changed from Nearly Normal Cooking to Jules Gluten Free.  Shepard produced the new formulas, wrote books, traveled, lectured at events and was the face of the company.  Andrews and his partners, who declined to be interviewed for this story, worked the day-to-day operations.

More recently, Shepard said she and her partners were not agreeing on much. “I thought the company needed to go in another direction,” Shepard said.  “They were more bottom-line centered, and I wondered about the community needs.”

“They were making major decisions without me, when they should have had a majority.  I wanted to be involved in those major decisions, but they started ignoring me,” Shepard said.

In early 2014, she wanted to dissolve the company and let everyone go their separate ways.  But Shepard said the others didn’t want that.  “We were oscillating in completely different worlds,” Shepard said.

Shepard officially resigned from the company March 18, 2014.  She posted a YouTube video about it.

Jules Gluten Free vs gfJules
Shepard is now starting over. But the transition is confusing her fans and customers because the former product bearing her name is still out there and readily available.  Shepard said she told her former partners she was officially revoking any license to use her likeness and name for Jules Gluten Free.  But the products and the website haven’t changed the logo or name, and the mixes remain on store shelves across the country.

She wants her customers to know she is no longer with the company.  In April, she started a new mix company, gfJules.

Now the case is moving through the court system.  Shepard hired intellectual property attorneys who she said believe her case is strong.

Aaron Davis, attorney and partner at Patterson Thuente Pederson, an intellectual property law firm in Minnesota., is not a part of Shepard’s case and has no specific knowledge of the details. But in general he said many people go into business without proper planning. “Almost all business relationships come to an end, yet many people/companies fail to agree up front as to how they would separate when the relationship splits down the road,” Davis said.  “Thus, break ups are often far messier than necessary, because the separation terms are unclear or non-existent.”

Shepard said she has learned that she should not go into a business partnership and have less than a 51 percent share.

Starting Anew
Meanwhile, Shepard has launched gfJules.com, a new website from which you can purchase her products.  She said the flour and mixes will be exactly the same as the ones customers are used to, but under the gfJules brand.  Her fans have rallied around her and spread the word of her resignation.  “The community has buoyed me in ways I never expected,” Shepard said.

She is excited about the future and hopes one day to be able to employ gluten-free people for this new gluten-free brand.  For more information about her new venture go to her new website.

Amy Leger is family editor for Gluten-Free Living, and frequently contributes other stories as well. She blogs at The Savvy Celiac.

When Your Child is Newly Diagnosed With Celiac Disease

When my daughter was diagnosed with celiac disease in 2000, it was an emotional roller coaster for my husband and me. Just a few weeks earlier we were so worried about her health; she had vomiting, diarrhea and her big belly protruding from her boney rib cage. Then we were told she had celiac disease. We finally had an answer. But we didn’t know the gluten-free learning curve was so steep.

Whether your child has to follow the gluten-free diet because of celiac disease or gluten intolerance, a lot of adjustments have to be made. Many common foods that children like contain gluten, and these are found everywhere from school to scouts, parties to play dates. You and your child have to get used to planning in advance and providing gluten-free food. You both may mourn the loss of easier days when much less preparation was required and many more foods were allowed.

The payoff, though, is your child’s return to good health and the prospect of living a full, happy life.

 

You’re not alone

Within one week of my daughter going gluten free I saw noticeable changes: no more vomiting and she became a happy child.

Beth Smith of Howell, Mich., found she, her 9-year-old son and 12-year-old daughter also improved when they went gluten free to treat their gluten intolerance in 2012. But it has been a challenge for them, too. “There have been ups and downs. Lots of frustration with myself and other people,” Smith says. “But I understand gluten free is our thing and we have to take control and not expect everyone else to know what we need.” Smith says she felt like she has had to educate her family on her own.

But there are many resources to help you get through the transition. You just have to know where to look.

The first step for you, and your child depending on his or her age when diagnosed, is learning everything you can about the gluten-free diet.

It is more than “no wheat, barley and rye.” You have to learn all the ingredients that can contain gluten, become skilled at reading labels and knowledgeable about preventing cross-contamination. Next, you have to figure out how cook gluten free in your own kitchen and how to safely eat outside your home. A positive attitude while doing this is critical to helping your child accept the diet and begin to take it in stride, as most children do.

Celiac disease centers, support groups, books and publications like Gluten-Free Living will all help get you off to a good start. Most have websites with reliable basic information about what you can and can’t eat, recipes and lifestyle tips. The University of Chicago Celiac Disease Center not only gives you a wealth of information on its website, but will also send a “Gluten-Free Care Package” filled with gluten-free food to your front door if you contact them during the first year after a celiac disease diagnosis.

The second step is finding a support group, which will help you learn the many nuances of the gluten-free diet. You’ll get tips on how to make your kitchen gluten-free friendly, which recipes really appeal to kids, suggestions for great gluten-free school snacks, and news about new products in your area. Smith says it would be very helpful for her family to have tips like this, especially about good gluten-free alternatives.

A support group also gives you others to relate to so you don’t feel so isolated. It’s important to know people who understand your challenges and will help celebrate your triumphs. Julie Salato, executive director of the non-profit Celiac Center of Minnesota, works with parents and children dealing with a new gluten-free lifestyle. “There is no substitute for the empathy and compassion” that you find in a support group, she says.

The Celiac Disease Foundation, Celiac Sprue Association and Gluten Intolerance Group have local support groups across the country. Raising Our Celiac Kids, called ROCK, is a parent-child support group with chapters throughout the U.S. These groups discuss everything from symptoms to new products to cooking and dining out. Their meetings provide a chance for both parents and children to meet others on the gluten-free diet. “The meetings give parents an opportunity to see how important it is to your child to fit in, and you get the added camaraderie of sharing challenges and successes,” Nikki Everett, chapter leader of ROCK-Charlotte, N.C., says. Everett also recommends that siblings attend support group meetings so they can better understand their brother’s or sister’s health issues.

If you can’t connect with a local support group, virtual support on the Internet can also be helpful. Celiac.com has a forum dedicated to answering celiac disease and gluten-free questions. Glutenfreefaces.com is a gluten-free social networking site where you can instantly post your questions or chat with fellow gluten-free folks. Just keep in mind that anyone can post information and be sure to double check the accuracy of what you read.

Social media also offers significant gluten-free awareness and support. There are many Facebook pages dedicated to the gluten-free lifestyle. On Twitter you’ll find people and organizations who post information about celiac disease, gluten intolerance and the gluten-free diet. A quick search of the key words “celiac” or “gluten free” will get you a significant list. You can choose which Facebook and Twitter pages are best for you.

A word to the wise: Following reputable organizations and experts will get you the most reliable information.

 

Adjusting to the diet

Adjusting to a gluten-free diagnosis for a parent is difficult. But it can be even harder on the kids, especially if they are old enough to take some responsibility for their diet.

Learning the diet, making good choices, reading labels, going out to eat and worrying about what your friends think isn’t easy. Children spend half their day in the classroom, so you’ll want to make sure their gluten-free needs are met in school. Check in with your child’s cafeteria, nutrition department, teacher(s) and coach(es) to ensure a safe gluten-free environment wherever they are. You may need a doctor’s letter to prove this is medically necessary. Also, consider reaching out to your school’s 504 coordinator to ensure schools are following the doctor’s and Americans with Disabilities Act requirements.

As early as possible start to teach your child about safe and unsafe types of foods, how to read labels, and how to speak up for themselves whenever food is involved, be it with a teacher, the parent of friend or a restaurant server. These are lifelong skills your child will need.

Provide your child’s food whenever it seems a gluten-free option won’t be available. Gluten-free kids and their parents quickly become experts at toting pizza, cupcakes, snack bars, granola, yogurt and a wide variety of other foods wherever they go. A sturdy, easy-to-carry and appealing insulated bag makes this much easier.

 

More than food

You may find you and your child have other issues to deal with beyond finding safe food.

Minnesota parents Tom and Karla Grotting’s two children have celiac disease. Their daughter, Ava, was diagnosed first and then their oldest child, Cole, who was asymptomatic, was tested. At the age of 7, he was diagnosed, too. “He was very depressed,” Karla Grotting, of Minneapolis, says. “He knew exactly what it would mean for him.”

“The hardest part [with the diagnosis] is being with friends and not being able to eat like everyone else,” Cole, now 16, says.

“One area which is often overlooked is the child’s mental health needs,” Salato of the Minnesota support group says. “It can be extremely difficult for kids to sit in lunchrooms day after day, smelling foods they can never eat and being teased because their food looks and tastes different.”

The Grottings chose to send Cole, and later Ava, to Gluten Free Fun Camp, based in Minnesota. “They’ve met new friends, tried new foods and had a blast,” Karla Grotting said.

“It is imperative for parents to find other children with similar diet restrictions for their child to connect with,” according to Salato.

Gluten-free camps seem the perfect place for gluten-free children to socialize with each other. There are camps in California, Rhode Island, North Carolina, Michigan and Texas. Make sure you begin researching camps before your spring break. Registration usually starts early in the year and fills up fast. Salato’s group offers a week-long “Gluten Detective” day camp for younger “campers” in the summer.

A new gluten-free diagnosis for your child is a life-changer for everyone in the family. Both parents and children need to learn as much as they can about the diet and get support from their peers who have “been there, done that.” Embracing the new lifestyle will be the best way to adjust quickly to a gluten-free diagnosis.

Resources

Support Groups

Celiac Disease Foundation
celiac.org

Celiac Sprue Association
csaceliacs.info

Gluten Intolerance Group
gluten.net

Raising Our Celiac Kids
celiac.com

Camps

See our list of gluten-free camps.

Online information

Celiac Sprue Association Cel-Kids Network
csaceliacs.info/children.jsp

Celiac Disease Foundation Kids Korner and Teens & Young Adults Information
celiac.org

Gluten Intolerance Group Generation GF
gluten.org/community/kids/

National Foundation for Celiac Awareness Kid’s Central
celiaccentral.org/kids/home

Teens Living with Celiac Foundation
teenslivingwithceliac.org

 

For more information, see Tips for Starting Your Family on a Gluten-Free Diet and be sure to check out our Gluten-Free Kids section. You can also sign up for our free e-newsletter to receive the latest gluten-free news, articles, recipes and more delivered straight to your inbox.

 

Amy Leger is Family Editor for Gluten-Free LivingShe just published an ebook,The Savvy Celiac’s Guide to the First 30 Day: Start Your Gluten-Free Life Now and writes a blog at thesavvyceliac.com.  Amy is married with two children. Her oldest daughter has celiac disease.

This article was originally published in our July/August 2013 issue. All information was correct at time of publication.

Tips for Starting Your Family on a Gluten-Free Diet

1. Make your kitchen gluten-free friendly

Buy a new toaster, cutting boards and colander to reserve for gluten-free use. You’ll worry less about cross-contamination. Purchase new containers of butter, peanut butter, jelly and any other products that could be cross-contaminated with crumbs. Either designate these as gluten free or teach the family never to double dip.

2. Create a space for gluten-free foods

It is easier to keep gluten-free foods all in one spot, perhaps in a basket or bin at a level your child can reach in the cabinet. Let your child know all the food in this area is safe.

3. Learn which ingredients you have to watch out for

Also learn which ingredients are safe. For help getting started, check out our Ingredients Index.

4. Learn which foods are naturally gluten free

This includes gluten-free flours such as rice, sorghum, quinoa, amaranth and teff; plain fruits, vegetables and meats; dairy products including real cheese, ice cream and yogurt that do not have gluten-containing add-ins; plain rice, quinoa, nuts, popcorn and potato chips; potatoes; and beans. For a more extensive list, see our Basic Diet Guide.

5. Stock up on necessary gluten-free products

These include gluten-free pasta, cereal, flour and baking mixes; xanthan gum (used in many gluten-free recipes); cereal and granola bars; bread mix or ready-made bread; frozen pizza crust or ready-made pizza; and snacks. More products than ever are labeled gluten free, making this job a little easier. You can also get apps for your phone that detail gluten-free products by brand name and category. (See our top 10 gluten-free apps.)

6. Keep backup gluten-free treats

Have frozen gluten-free cupcakes on hand if your child is in pre-school or elementary school where birthday or class parties may come up on short notice. If possible, keep them in a freezer at school just in case you have no notice. Teachers are also sometimes willing to keep treats like your child’s favorite candy or snack right in the classroom for those times when something that contains gluten is given to the other children.

7. Learn how to cook gluten free

This will save you money, and it’s not as hard as you might think. There are many baking mixes to make the job even easier. A number of the recipes you use may already be gluten free or easily adjusted to be. For example, rice crispy treats can be made gluten free simply by using Kellogg’s specialty gluten-free version of Rice Krispies. See our recipe section for more gluten-free cooking inspiration.

8. Tell coaches, parents of friends and other adults who care for your child about the diet

Anyone who is responsible for your child for any amount of time should know about the gluten-free diet. Don’t hesitate to bring it up. It’s helpful to give them a simple list of safe foods. But especially at first you might prefer to send your child with their own gluten-free items. Pack a sandwich, a snack or piece of pizza that simply has to be heated in foil, and you’ll be covered for most events.

 

Is your family going gluten free for the first time?

Going gluten-free isn’t easy at first, but once you learn the basics, it becomes much simpler to help your child live a happier, healthier gluten-free life. To help get started, consider signing up for our free e-newsletter to receive gluten-free recipes, news, articles and more delivered to your inbox each week.

Students Win Fight for Gluten-Free Options

University settlement could have broad impact

Students with celiac disease and their parents have long fought for the right to have safe, gluten-free options in college dining halls. Now they can point to the Americans with Disabilities Act (ADA) to back up their rights as the result of settlement between the U.S. Department of Justice and a Massachusetts university.

The settlement is expected to have a far-reaching effect for those with special diet needs.

It came after a complaint by gluten-free and allergic students to the Justice Department. The complaint alleged that Lesley University was violating Title III of the ADA by failing to provide “necessary reasonable modifications … to fully enjoy the privileges, advantages and accommodations of its food service and meal plan system.” The settlement, reached in December 2012, could be a game changer in making gluten-free food accessible at all schools. Some speculate its impact will be felt in a larger arena even though the settlement is specific to schools that require students to participate in a meal plan.

The settlement included the university’s agreement to provide:

  1. A $50,000 payment to the student(s).
  2. Ready-made gluten- and allergen-free food in dining halls.
  3. Individualized meal plans.
  4. A dedicated space in its main dining hall to store gluten-free and allergen-free foods.
  5. Staff training.
  6. Better signage indicating which foods are gluten-free and allergen-free and which contain gluten and allergens.

The university also agreed to create a process students can follow to have their dietary requirements met. And it agreed to work to retain vendors that include gluten- and allergen-free foods at dining sites accessed with prepaid meal cards.

Mary Pat Lohse, Lesley’s chief of staff and senior advisor to the president for strategic planning and initiatives, says the university took the Justice Department complaint very seriously and made the required changes. Lohse says it put a policy in place a few years ago to handle food allergies and gluten-free diets, but it needed updating.

“The policies in place today have evolved from where they were three years ago and reflect the concerted efforts the university has made to improve the quality and safety of the food that it provides to its students,” Lohse says.

While those who have celiac disease or gluten intolerance may not think of themselves as having a disability, the Justice Department’s decision to pursue resolution of the students’ complaint as a violation of the disabilities act sets a new precedent for gluten-free accommodations.

 

 

What this means for higher education

Dena Iverson of the Justice Department says the agreement with Lesley University “will serve as a model for other schools—particularly those that require students to participate in a meal plan.”

Lesley previously required all students living on campus to participate in, and pay for, its meal service plan-even if some students with severe allergies could not eat the food available through the plan without risk of illness, the Justice Department says in an online question and answer page it set up to explain the settlement. Under the agreement, Lesley has made modifications to its meal plan to allow students with food allergies to take advantage of its food services. The agreement also requires Lesley to consider exempting students from its mandatory plan if they cannot, because of disability, take full advantage of the university’s meal service plan. (The Q&A is available at ada.gov/q&a_lesley_university.htm)

Iverson says, “Food service plans are not one-size-fits-all, and each school should evaluate its food service plan to assess whether reasonable modifications for its students with disabilities are necessary to avoid discrimination.”

Scott Lissner, president of the Association on Higher Education Awareness and Disability (AHEAD) and ADA coordinator at Ohio State University, says colleges and universities have to take notice of the settlement. “It sets a pattern that I think will be useful for colleges, students and employees with celiac disease and food allergies,” he notes.

Lissner says he is not surprised celiac disease and some food allergies would be considered a disability. A disability is defined by the ADA as a “mental or physical impairment that substantially limits a major life activity.” The Justice Department settlement points to “eating” and “major bodily functions like the gastrointestinal system” as examples of “major life activities.”

Lissner says he believes the Justice Department was sending a clear message that you can’t discriminate against people with food allergies. He has personal experience with the issue because he has a wheat allergy and his wife has celiac disease. Lissner says universities are probably already discussing whether changes need to be made. “I think you’ll see some little [changes] quick. Next fall, with dining plans you’ll see more clear statements referencing dietary needs, clearer paths for making accommodations,” he explains.

Another consequence of the settlement may be that those with special dietary needs will be more inclined to rely on the disabilities act when they have difficulty getting adequate accommodations. Lissner says these students don’t think of themselves as disabled and previously might not have thought of the disabilities act as having any role in their lives. He expects that more will contact their disability service office as a result of the case.

Lissner also sees this settlement eventually impacting extra-curricular school activities. He believes that offering free pizza to get students to come to an event or program won’t be enough. “Those things would be covered the same way the dining services would be covered … a lot of these activities surround food,” Lissner says. “I now need [to order] a second box of gluten-free pizza.”

 

Impact in elementary and secondary schools

Even before the Lesley settlement, public schools were starting to take the idea of food allergies and gluten intolerances seriously. For example, the Green Bay School District in Green Bay, Wis., started offering an updated gluten-free menu this school year.

“We are a National School Lunch Program school district, and as such it is our responsibility to substitute foods for any child who has a disability,” Laura Rowell told the Green Bay Press Gazette last February. Although the district had been offering a few gluten-free choices for about five years, this year it came up with a full menu that includes gluten-free pasta, homemade mashed potatoes and a safe gluten-free preparation process. They worked very closely with their vendors because they wanted all gluten-free foods to be certified.

“We had to look into our responsibilities from the USDA and ADA guidelines,” Rowell recently told Gluten-Free Living. “I am saddened that other food service areas aren’t taking this seriously. This is our job, to be food and service. Why not be proactive and meet the federal regulations?”

Food manufacturers are also paying attention to the impact this settlement may have on schools. “As gluten free begins to be seen as a basic accessibility issue rather than simply a diet preference, it is increasingly important for food companies to develop more gluten-free options,” Lindsey Jahn, associate editor for Manufacturing.net, an online industry publication, says.

 

Impact on restaurants

The settlement could also put restaurants on notice—but only to a certain point.

Iverson says the ADA doesn’t require restaurants to serve gluten-free or allergen-free food. But it recommends a restaurant take “reasonable steps” to accommodate without completely changing the business operations. Examples from the Justice Department include “answering questions from diners about menu item ingredients … or omitting or substituting certain ingredients upon request if the restaurant normally does this for other customers.”

As awareness of the gluten-free diet grows and more customers seek gluten-free meals, more restaurants are voluntarily accommodating the diet. The Gluten Intolerance Group, the National Foundation for Celiac Awareness and the Celiac Sprue Association have programs to help restaurants safely prepare and serve gluten-free food. You can use websites and phone applications like GlutenFreeRegistry.com and FindMeGlutenFree.com to find restaurants that accommodate gluten-free diets. However, restaurants are not required to train their staff or offer a gluten-free menu.

 

The bottom line

College and university students are likely to feel the most immediate and widespread effects of the Lesley settlement. It was widely reported in the mainstream press as the first settlement of its kind, and the role of the Justice Department was seen as an indication of the seriousness of the disability claim. The damages awarded to the students and the specific steps the university agreed to are likely to be drawing serious consideration by other higher education institutions.

Elementary and secondary schools are also likely to take serious note because they, too, are bound by the ADA in providing accommodations to students. Restaurants may voluntarily try to improve the availability of gluten-free options, but they are not required to do so.

While the ripple effect of the settlement remains to be seen, it clearly is having an impact on awareness of gluten-free diets across the country. Overall, the settlement has been hailed as providing a roadmap for the way schools can meet the needs of their gluten-free and allergic students.

 

 

Tips for getting GF food in your school

Scott Lissner, president of the Association on Higher Education Awareness and Disability and Americans with Disabilities Act coordinator for Ohio State University, has these tips for getting accommodations for a gluten-free diet:

 

  1. Go to your school/district/university’s dietitian first. Go to the school’s website for information on dining halls, residence halls or food service. If there is a way to contact a dietitian about your school’s food plan/options, take advantage of that.
  2. If there is no option to talk to a dietitian or nutrition services, then check with disability services. At a large university it could be an entire office staff; at an elementary school it may be one person designated as the disability/ADA/504 Plan coordinator.

 

 

Amy Leger is the family editor for Gluten-Free Living and operates her own website, thesavvyceliac.com. She has a daughter with celiac disease. Leger and her family live in Minnesota.

Grandparents Guide: Tips for Taking Care of Your Gluten-Free Grandchild

It’s time for the grandkids to visit. Mom and Dad get a break. Grandpa and Grandma get a kid fix and the grandkids get love and attention. Ideally, it’s a win-win-win situation, right?

It can be for grandparents who understand their grandchild’s gluten-free lifestyle. But for grandparents new to the gluten-free diet, feelings can range from uneasy to downright scary.

One day your grandchild is like all the other kids, and the next day you have to take a crash course in all things gluten free so you can safely care for your grandson or granddaughter. It can seem like a daunting task, but simple steps will help ease the way.

Ask the parents for help

Many parents are happy to help with the gluten-free meals while their kids are at Grandma’s and Grandpa’s house. They send snacks, bread and cereal, or perhaps even everything needed for breakfast through dinner. Some provide a list of favorite safe foods listed by brand. If you would like any of these, be sure to ask the parents.

The parents are the best source of information on how they specifically handle the gluten-free diet. They can guide you on age-appropriate steps to make your grandchild feel welcome, loved and safe in your home. Even if you have a different opinion on how things should be done, it’s best to keep consistent with rules the child follows in his or her daily life. For example, if the parents only trust ready-made products that have been certified as gluten free, make sure that’s what you buy. These will have a symbol on the package from the certifying group.

Grandchildren shouldn’t feel strain between parents and grandparents over the gluten-free diet. If you have issues to discuss, make sure you do so privately before the child comes to your house. Don’t dismiss concerns about always being gluten free and never suggest that a little gluten won’t hurt or give in to any claims by the child that gluten is sometimes allowed.

Learn about what gluten free means

Gluten-free food is free of wheat, barley (malt) and rye. Regular oats that you buy in the supermarket, including Quaker Oats, are not gluten free. Only oats that are certified gluten free are safe.

You may not realize how many items have gluten in them until you start looking for products without it. Mainstream bread, crackers, pasta, cookies and other baked goods, and pizza are among the items that are likely to contain gluten. You will have to buy a gluten-free specialty version of any of these kinds of products.

But feel free to stock up on fresh fruits and vegetables. Plain meat, potatoes, rice and corn are also gluten free and can be used to make a safe lunch or dinner. If you are looking for a mainstream gluten-free treat, head for the ice cream freezer, where you will find many options. Always read labels looking for wheat or barley, and avoid any flavors with pieces of cookies, cake, pretzels, cookie dough, etc.

Read labels on any processed food you plan to give your grandchild. Look for wheat in the ingredients list or a statement that says, “Contains wheat.” A federal allergen labeling law requires that wheat always has to appear on the label when it is used in a food, either in the ingredients list or the “contains” statement. Also look for oats and barley, malt, malt extract or malt flavoring and avoid foods that contain any of these. In the beginning it might be easier to get a list of safe foods from the child’s parent or to buy only foods specifically labeled gluten free. Food labeled “wheat free” is not necessarily gluten free.

Linda Thielke, of Phillips, Wis., is learning to cook for her grandchild, 3-year-old Roxy. If an ingredient listing isn’t clear, Thielke takes it to the manufacturer. “Calls to the 800 numbers on food packages answer a lot of questions,” Thielke says.

Many supermarkets now have special sections where they stock all kinds of gluten-free products. Check with your grocer about where they put the gluten-free items. Some supermarkets do spread them throughout the store so you might find gluten-free pasta in the same aisle as the wheat pasta. If you have a smartphone, there are a number of apps you can download that will also help you find gluten-free items in the supermarket.

It’s natural to have a lot of questions when you are learning the basics of the gluten-free diet.

Linda Mensing of Beckemeyer, Ill., says it took time to learn what is safe and what is not for her 4-year-old gluten-free grandson Kasen. “How extreme do you go when you have (a grandchild) with celiac disease? Does your dish soap, laundry detergent, makeup all have to be checked?”

The best available scientific research says gluten cannot be absorbed through the skin and has to be eaten to be harmful. So it’s very unlikely any of these products pose harm to your visiting grandchild. Even if they kiss you, the amount of gluten they could ingest from lipstick or makeup would be far below levels that are considered safe for gluten-free food products.

When your grandchild visits

It’s likely you have been to your grandchild’s house since they were diagnosed with celiac disease or gluten intolerance, so you might generally know the drill. But it can be a different story when it’s your home and you don’t have the comfort of knowing the child’s parents have taken all the needed steps to keep things safe. Here are few simple tips to ensure your grandchild’s visit will be successful.

Have gluten-free food on hand.

Make sure you are already stocked with some gluten-free options when your grandchild comes to visit. Find a little space in a cupboard or on a shelf for his or her items so they always know where to look. This way they feel welcomed and accepted.

Ready-made products might be easier at first if you are not confident about cooking and baking gluten free. Donna Hoel of Cedar, Minn., grandmother of 8-year-old Isaac, says she struggles with preparing meals for him. “We all try to cook for [Isaac’s] needs, and mostly we waste our time and the expense of food,” she says.

Find out your grandchild’s favorite foods and treats. Consider buying single-serving, gluten-free foods to avoid waste. You can find frozen gluten-free pizza, chicken fingers and chicken nuggets, bagels, bread and other items that will make meal preparation easier.

If you like to bake and cook, there are numerous child-friendly gluten-free recipes available. And traditional recipes can be adapted to be gluten free. Sometimes all it takes is the substitution of one gluten-containing ingredient for one that is gluten free. You’ll find easy-to-make cake mixes from companies like Betty Crocker, Glutino, Wegmans, Wholesome Chow, 1-2-3 Gluten Free and many others. These are available in many supermarkets and in even in some Marshalls and Home Goods stores.

Think inclusively.

Always make sure your grandchild is included at meals. For example, if you are making spaghetti, it’s a simple matter of making some gluten-free pasta while being mindful of the potential for cross-contamination in cooking and serving utensils. Most spaghetti sauce is gluten free and many now have a gluten-free label.

If you are offering a treat or dessert, make sure to have something for your grandchild. It’s great if you can make something gluten-free that everyone can share, but if that’s not possible have a gluten-free equivalent. Even if it’s not exactly the same, the most important thing is making sure your grandchild does not feel left out.

If others might be visiting while your grandchild is there and bring unexpected goodies, use the same strategy that works in the classroom – have a backup supply of one of the child’s favorite treats in the cupboard.

Prevent cross-contamination.

It takes practice. “I have to think and concentrate when I am cooking for him,” Hoel says of Isaac. “Remember to clean all areas and don’t use the same serving spoon.”

Thorough washing by hand or in a dishwasher should be sufficient to make utensils, pots, pans and colanders safe, according to sanitation experts. But some grandparents and parents like the peace of mind they get by purchasing a separate colander, pot and cutting board that’s only used for gluten-free food.

Crumbs in a toaster can cross-contaminate gluten-free food, so it’s best not to share one. You can toast gluten-free bread, bagels and other products on a clean cookie sheet in your oven,  purchase special toaster bags that will prevent cross-contamination or have a separate toaster used only for gluten-free items.

Grand parenting is supposed to be fun. There is no reason the gluten-free diet should change that. By following these suggestions, you will understand the diet quickly, and it will be much easier to feed your gluten-free grandchild without worry. Then you will be free to enjoy your time together.

Resources

You can find a lot of information about celiac disease, gluten intolerance and the gluten-free diet online. Our website has details on the basic gluten-free diet, kids and the gluten-free diet, ingredients, recipes and more. You can also read our blog, which includes updated gluten-free news and other observations of the gluten-free world by our staff.
You can also go to the websites of support groups and celiac research centers like these:

• Celiac Disease Foundation celiac.org
• Gluten Intolerance Group gluten.net
• National Foundation for Celiac Awareness celiaccentral.org
• Celiac Center at Beth Israel Deaconess Medical Center celiacnow.org
• Celiac Disease Center at Columbia University celiacdiseasecenter.org
• Center for Celiac Research at Mass General celiaccenter.org
• University of Chicago Celiac Research Center cureceliacdisease.org

These are trusted sources of accurate information about the gluten-free diet. Be cautious of things you might read from less-reliable sources. There are also a number of books on celiac disease and the gluten-free diet or cookbooks with gluten-free recipes available at amazon.com and in bookstores.


Amy Leger writes regularly about family issues for Gluten-Free Living. She lives in Minnesota with her husband and two daughters. Her oldest daughter has celiac disease. Amy’s website, thesavvyceliac.com, covers news, cooking & shopping tips in the gluten-free world.

Heading Off to College: How Gluten-Free Students Survive and Thrive

The first year away at college is usually filled with a whirl of emotions. Students are excited for this new part of their lives to begin — to get out from under their parents’ watch, take a chance, live on their own, and make the most of their own decisions.

And college is a whole new world.  The classes can be more challenging and parents aren’t there looking over a student’s shoulder. Plus there’s the excitement and worry about making new friends and fitting in, not to mention simply not getting lost on campus that first week or two.

When a student also needs a gluten-free diet, the transition presents even more challenges.

Physicians at Stanford University’s Lucile Packard Children’s Hospital have been taking note of these challenges and the way students on campus handle them. And the consensus is that first-year Stanford students don’t always stick to the gluten-free diet.

“We had some Stanford students not doing as well as they got away from the care of mom,” says K.T. Park, M.D., the hospital’s attending physician for pediatric gastroenterology. He says students become more “flexible” with their gluten-free diet than they should be.

“It is natural for them to explore … and try to have as similar an experience as possible to their dorm-mates, but they have to be gluten free,” Park says, noting that students have to realize the diet is “just as important as medication for someone with a chronic disease.”

Park and other researchers started surveying about two dozen first-year gluten-free Stanford students this past fall to find out how they adapted to school and their gluten-free lifestyle during their first semester. The students will have filled out three surveys by early 2013 regarding quality of life, availability of gluten-free food, compliance with the diet, and digestive health.

The researchers hope to use the survey results to create health policy models for students with chronic diseases.

Meanwhile, Gluten-Free Living talked to a few students to find out what the college experience is really like when you are gluten free.

 

Freshman year

None of the students we interviewed put gluten-free food at the top of their list in the search for a college or university. They all looked for a complete package of academic and social features, with the gluten-free diet added in.

Paul Roy, 18, a freshman at the University of Minnesota, in Minneapolis, was diagnosed with celiac disease six years ago. He says accommodating the gluten-free diet wasn’t his first priority when choosing a school, but the one he attends is accommodating his needs.

“When the chefs cook [my food] they have a designated section and tools just for gluten-free foods,” Roy says.  One concern is consistency between regular cafeteria staff and student workers. “Student workers aren’t up to par on gluten-free foods….so sometimes I am stuck with eating a hamburger with no bun and some soggy corn.”

Sam Lohse, a 20-year-old junior at Concordia College in Moorhead, Minn., has celiac disease, but gluten-free food was not a primary factor when she chose which school to attend.

When she was searching for colleges, she says she looked at the overall picture of the school instead of focusing on the gluten-free diet.  She and her parents met with the managers of the dining hallsafter she narrowed her choices to a few finalists.

Lohse says Concordia has been a good fit, meeting her educational needs while giving her several options to eat gluten free. “The first few weeks at Concordia were a little rough,” she says. “I remember not having a lot of variety.” Since then her options have been increasing.  The dining service has a gluten-free toaster, microwave and refrigerator for her gluten-free food.

Like Lohse, Andrea Wilhite, a 20-year-old junior at Mount Mercy University in Cedar Rapids, Iowa, did not give the gluten-free diet first priority in choosing a school. But she says she now wishes she had focused more on that aspect of her college life.

Wilhite was diagnosed with celiac disease and started following the gluten-free diet when she was 17, not long before she went to college. She describes her first few weeks at Mount Mercy as “very hard.”  “Transitioning into a new school and environment is hard enough, and adding a gluten-free diet on top of that can be very challenging,” Wilhite says.

She figured out which foods in the dining hall were gluten free by reading ingredient lists in a binder that detailed all the foods served. The school makes some foods gluten-free for Wilhite and recently purchased gluten-free buns and tortillas.

Her options have expanded, but perhaps not quite enough. “There are days when I know the cafeteria will hardly have any options for me, and I’d much rather just eat in my room or go out to eat and get something I know is gluten free,” she explains.

 

Universities making the grade

Gluten-free options have only recently been getting more priority in higher education as demand increases. The Wall Street Journal published a survey of 1,500 students done by food-service giant Aramark that showed 4 percent of students had a gluten intolerance and another 5 percent said they were gluten-free for other reasons.

Heather Stueven, residential dining supervisor at Concordia, admits choices used to be very limited.  But about two years ago she started seeing an increase in the number of students with celiac disease and in requests for gluten-free diets. As a result, she has been able to order more foods, including bread, bagels, brownies, pancakes, cereal and pasta.

Many other schools, including Pennsylvania State University, Boston University, University of Chicago, University of South Florida-Tampa, Southern Methodist University and Drexel University, have expanded gluten-free choices for students.

 

Maturing in the gluten-free lifestyle

Both Lohse and Wilhite have matured in their gluten-free lifestyle while in college.  Lohse has become more independent. “Before college, my mom always automatically checked everything for me, checked ahead if we were going somewhere … so becoming my own advocate was the biggest learning experience,” she says.

Wilhite says she started to recognize and deal with “emotional issues” over her difficulty eating gluten free at her school and turned to the Celiac Group of Eastern Iowa for help. “It really helps to be able to be around people who understand your frustrations and situations that you encounter when following a gluten-free diet,” Wilhite says.

Though still a freshman, Roy has been proactive about his diet right from the start of the first semester. He became a university dining adviser for a  gluten-free organization on campus and his residence hall so he can make sure cafeteria staff is educated and handles gluten-free diets correctly.

All three students recommend doing significant research before choosing your school. Wilhite suggests giving equal weight to your educational and dietary needs. And Lohse recommends being a little more flexible and not ruling out any school until you visit the dining hall and talk to the staff.

The challenges of going to college are part of growing up. But in order to meet them, students with celiac disease or gluten intolerance need to be able to follow a healthy gluten-free diet. The transition is much tougher if you don’t feel well, have enough energy or the ability to concentrate. Finding a school that works with you to meet your dietary needs will make the transition much easier.

Finding a college that’s gluten-free friendly

•  Check each school’s residential life or dining hall web page to find out how special dietary needs are handled.

•  Visit glutenfreetravelsite.com for reviews of colleges by students. The site also includes colleges and universities that have gone through the National Foundation for Celiac Awareness GREAT Kitchens Program, which provides a course for chefs and food service managers on safe gluten-free food handling and preparation. You’ll also find links to some campus dining web pages.

•  Get in touch with the school’s nutritionist or head of dining services and ask directly about gluten-free options. You can often do this by phone or email before visiting a campus. See if you can set up a meeting when you visit.

•   Go to the dining hall when you visit a campus. You’ll be able to see how accessible and well-maintained any areas set aside for gluten-free students really are.

•  If possible, eat in the dining hall on your visit. You will get a first-hand look at what it’s like to get a gluten-free meal. If you have talked to the school nutritionist or head of dining services, you will know if there is a specific dining hall that is designated for gluten-free students.

•  See if there is a gluten-free student group on campus and get in touch with members to ask about the reality of eating gluten-free on campus.

•  Find out if you will be required to pay the full fee for on-campus dining or if there may be other options depending on how well the school can meet your needs.

 

What to take

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Gluten-free students who have already been through the experience of going away to college and living in the dorms say it will be much easier if you have the following items:

1. A microwave and mini refrigerator

Some schools require you to rent a combined micro-fridge, so check before you purchase either of these items. Others will let you bring your own. If so, buy a refrigerator with the largest freezer compartment you can find. In some cases these appliances are not allowed in dorm rooms and you may have to use the ones in a student lounge, not an ideal arrangement. Make sure you know in advance what the rules are. Toasters and hot plates are usually not allowed in dorm rooms, but check to see if special accommodations can be made. Many gluten-free students bring a toaster, which they use discretely and safely, but it can be a violation of dorm rules.

2. Plate, bowl and utensils

Like any college student, if you are going to prepare food in your room, you will need these basics. Disposables may be a good idea if it’s difficult to clean these items, for example, if you don’t have a sink in your room.

3. Gluten-free staples

Bring non-perishable items including cereal, energy bars, crackers, peanut butter and snacks. If you have access to a microwave, bring things like gluten-free instant oatmeal, soup, popcorn and ready-to-heat entrees.

If you have refrigerator, bring frozen gluten-free bread, rolls, bagels, waffles, pizza, chicken tenders and pasta dishes like lasagna and macaroni and cheese. (Now you know why the bigger freezer is important.) Start the year with fresh fruit and vegetables like mini carrots in an amount you can eat before it spoils, then replenish from the dining hall or a local grocery.

All these will come in handy when the dining hall options are getting repetitive or you want to grab something quickly in your room.

 

 

Amy Leger is the mother of a gluten-free teenager.  She writes regularly for Gluten-Free Living about family issues. She also blogs at www.thesavvyceliac.com. Amy lives in Minnesota with her husband and two daughters.