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.
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