Celiac is the Most Googled Disease in These Six States

A national report showed that celiac is the most Googled disease in six states, making it the second most commonly Googled disease in the country (along with diabetes). 

TermLife2Go conducted a study to determine these highly Googled diseases by state. They used Google Trends and looked at each state over the past year to compile every disease according to search popularity. 

The states most frequently Googling celiac are Idaho, Montana, Utah, Kansas, Wisconsin and New Hampshire. 

Celiac is the Most Googled Disease in These Five StatesCeliac disease is an autoimmune disorder in which the body mistakenly reacts to gluten, a protein found in wheat, barley and rye, as if it were a poison. It affects as many as one in 100 people, although most have not been diagnosed. When someone with celiac consumes gluten, the immune system reacts by destroying the part of the small intestine that absorbs vital nutrients. This malabsorption can lead to serious illness. Click here to learn more about celiac disease.

Diabetes tied with celiac for second most frequently googled disease. Interestingly, there is some overlap between the two.

Recent research shows that having celiac disease puts someone at a higher risk for developing type 1 diabetes. While study results vary, they do show that the prevalence of type 1 diabetes in those who have celiac is 1.6 to 16.4 percent

According to Diabetes Self-Management, if you have diabetes and are wondering whether you have celiac, you should get tested. “Besides the more ‘traditional’ symptoms, you may notice unpredictable or unexplainable swings in your blood glucose; hypoglycemia a couple hours after a meal; hypoglycemia that is hard to treat; and lack of improvement in your HbA1c level. Of course, these diabetes symptoms can be due to other causes, but, they could be linked to celiac.”

Managing type 1 diabetes while adhering to a gluten-free diet can be challenging. It is important to keep a close watch on how diet impacts the health of children who have both type 1 diabetes and celiac disease. Dietary counseling is considered essential to ensure patients are eating properly and staying healthy.

Click here for more information on managing celiac disease and type 1 diabetes. 

The only effective treatment for celiac disease is a lifelong gluten-free diet. Waiting to start a gluten-free diet may have consequences. It increases the risk of osteoporosis, stomach problems, iron deficiency anemia, infertility and other autoimmune disorders.  

It’s best to speak with a health professional for diet tips, but some general guidelines include: eating plenty of fresh, whole foods such as fruits, vegetables, fish, eggs and lean meat; replace gluten containing foods with gluten-free starches such as rice, corn and quinoa; and carefully checking food labels for gluten in products you might not think of as containing gluten.

For those who are curious, HPV infection is the most commonly Googled disease in the United States. Heart disease is one of the least Googled, though it is the deadliest disease in the country. 

Banana Babies: A History Lesson for Celiac Awareness Month

I first learned about banana babies in the early 2000s. The term refers to very sick children who were diagnosed with celiac disease, placed on diets heavy in bananas and told they would outgrow celiac. Years later, many found themselves not feeling well because —as the medical community would later come to understand—celiac cannot be outgrown.

I know more than one banana baby personally, including Ceil Chookazian, who owns Foods by George with her husband George. Chookazian was actually one of the very first people I had the privilege of meeting within the community after my celiac diagnosis in 2000. Perhaps that is why I have always felt so strongly about banana babies and their unique, complicated history with celiac and the gluten-free diet.

How it began

I recently realized that I don’t even remember the last time I had a conversation about banana babies. With May being Celiac Awareness Month, I wanted to do something to get the term out there again.

“This banana diet really was developed in the [1930s] and ‘40s, when these kids that were brought to the hospital were dying,” explains Alessio Fasano, MD, Director of the Center for Celiac Research and Treatment at Massachusetts General Hospital. “So the idea was because [the children] are having diarrhea—because that was the main manifestation of celiac disease at that time—and because they knew that with diarrhea you lose some minerals, in particular potassium, empirically they decide for bananas. Why? Because they’re filled with astringent, so in other words they make you constipated, so they try to counterbalance the diarrhea and…because they are rich in potassium. So that’s the reason why they decided to focus on bananas and they give you enough calories to stay afloat. And of course, eating bananas and nothing else, you are gluten free. And you know—surprise, surprise—these kids were surviving on that diet.”

Fasano, a renowned expert on all things celiac, covers its history in his book Gluten Freedom: The Nation’s Leading Expert Offers the Essential Guide to a Healthy, Gluten-Free Lifestyle, including how the banana diet was developed and a first-person banana baby account.

Gluten’s introduction

As Fasano notes in the book, the major breakthrough with celiac disease was made by Dutch pediatrician Willem-Karel Dicke following World War II. He writes, “In the decades before Dr. Dicke’s discoveries, many children thought to have celiac disease were fed bananas almost exclusively for three to six months. A pediatrician from New York City named Sidney Haas developed the diet in the 1920s. It remained the guiding therapy until 1950, when Dr. Dicke published his thesis with a meticulous dietary study that documented gluten as the dietary trigger of celiac disease.”

At the time, the understanding was that celiac disease could be outgrown. “What they did at that time was, after four to five months they were on this diet, they gradually introduced everything else,” says Fasano. For some of the children, the outcome was horrible. “A good chunk of kids relapsed and they died,” he explains. In other cases, the results were different. “A group eventually did not relapse or relapsed with much milder symptoms, and they survived.”

The banana diet continued into the 1950s and ‘60s. “The reason why it was still used in the ‘50s is because the gluten-free diet was not popular yet,” explains Fasano. There was a gap in disseminating information about celiac and the gluten-free diet. “Dicke’s work was not really…streamlined, and in the meantime the success of the banana diet really took over and was extremely popular[ly] implemented. By the time that Dicke’s work became more clear and then subsequent work found out there was gluten in wheat that was the culprit, then at that point the gluten-free diet started to gain popularity.”

Wide range of celiac symptoms

Chookazian and her younger sister were both placed on the banana diet in 1960, toward the end of the diet’s popularity. Chookazian was three years old and her sister around 18 months old when they became symptomatic. “We exhibited differently, yet we both had celiac and we both were put on the diet and we both ate a lot of bananas, bananas and [more] bananas,” says Chookazian. “It was actually called non-tropical sprue when we were little.”

She describes the differences between her symptoms and her sister’s. “I started to get sick [with] the measles, mumps, whatever; I never seemed to come out of it,” she says. Her sister, meanwhile, experienced something very different. Chookazian explains that “during that time period there was a terrible starvation period in Biafra and there was a lot of information in the news about Biafran babies that were very thin in their arms and legs with big stomachs from being malnourished—that’s how my younger sister looked. Whereas I, on the other hand, looked really big and puffy, and got bigger rather than smaller.”

Their doctor was stumped by the two sisters and their symptoms. He sought out the advice of a medical professor from Europe. “And he contacted this doctor and said, ‘I have these two little girls. I don’t know what’s the matter with them. Here are their symptoms.’ And [the professor] said it sounded to him like a thing called non-tropical sprue. And he told our doctor what to do.”

Implementing the banana diet

Chookazian remembers how she and her sister were admitted to the hospital. Their doctor was very honest with her parents about the severity of the situation. “So this doctor said to my mother, to my parents, ‘They’re probably both going to die. We don’t exactly know, but we think it’s this thing called non-tropical sprue and here’s the plan. You’re going to start them out on things like rice, potatoes, bananas,’ and that’s where bananas came in.”

In addition to the bananas, she remembers also eating a great deal of warm rice cereal. “My mom would heat up some milk and put in some rice cereal and add the bananas and banana flakes into it, and for the first three months that’s pretty much what we had.” Chookazian remembers eating the banana flakes from Kanana Banana Flakes fondly. “Probably four times a week, we would have bananas or banana flakes, and it would be in the cereal or sometimes at lunch we would mix the banana flakes in cold water. [My mother] just wanted to get [the bananas] into us.”

She also remembers eating Hol Grain Brown Rice Crackers—“those same crackers they have now”—which were a staple in her diet once she started cutting back on bananas. “They were very durable. My mother would take ham and roll it up and put it in between two of those.” But by the time Chookazian was a teenager, she was eating gluten and a much wider diet.

When symptoms returned

As she got older, Chookazian began eating more and more gluten. As an adult, she would grab slices of pizza on the way home from work. By the late 1980s, unbeknownst to her, her celiac had relapsed. She had been losing weight for a prolonged period of time. She continued to get worse, particularly around the time she began to date her now husband George. “George and I started dating and then I started eating a lot of bread. That just exacerbated everything,” she says. “In a very short time, a two- to three-week period, I went from 123 pounds or so down to about 92 pounds.”

All the while she had been seeing her internist, who diagnosed her with irritable bowel syndrome. He did not make the connection with celiac. In fact, “I had told him I had celiac disease when I was a kid,” to which the doctor replied, “No, no, no, you outgrew that. That’s not it.”

Eventually Chookazian became so sick that she was hospitalized in 1990. “I was in the hospital just wasting away.” Finally, “a doctor named Zvi Fischer over in Ridgewood, New Jersey, at Valley Hospital, got on the case.” It did not take long for Fisher to determine the cause of Chookazian’s symptoms. “He took a look at my stuff, my history, and he said, ‘Oh, you have celiac disease.’ I said, ‘I outgrew that’ and his eyes sort of crossed and he said, ‘No you didn’t. You never outgrow celiac disease.’  He said, ‘you’ve got a full-blown case of celiac disease.’”

Banana babies today

In Fasano’s own practice, he has encountered banana babies “many times, some with very sad stories. The vast majority of these people remembered that they were diagnosed with celiac disease or were told by their family, the parents, they were diagnosed as celiac during the early days, and that was completely forgotten and then they start to again have symptoms and now that celiac disease and gluten are so popular, they check it out—‘what could be wrong with me?’—and find out that the celiac disease can be one [cause], and then they put two and two together.”

When asked whether there are individuals who were placed on the banana diet but are unaware that they never outgrew celiac disease, Fasano notes there are, but the exact numbers are indeterminate.

Chookazian, for her part, welcomed confirmation that she never outgrew celiac and was relieved to learn the cause behind her symptoms. “That was probably one of the best days of my life,” she says. “It was a relief for me because I was so sick. I felt very fortunate. I thought to myself, ‘I know how to do this.’ Certainly my greatest blessing was George. Not a thing that I wanted that he didn’t make for me.”

 

Susan Cohen is a New York freelance writer. She contributes regularly to Gluten-Free Living.

11-year-old Creates Stunning Celiac Awareness Bracelets for a Cure

 

For some kids, having celiac disease can make them bashful or self-conscious, resentful that they have to be different at a time in their lives when all they want to do is fit in. For others, it can feel like a badge of
honor—something that makes them unique, and propels them to help others in the celiac community. Over the course of the five years since she was diagnosed, Skylar Weitz, now 11, has undergone a metamorphosis from the former to the latter. “I used to be shy about having celiac, but now I just want people to know about it and realize how it affects people on a day-to-day basis,” she says. So last fall, the Long Island-based 5th-grader started making and selling gorgeous celiac awareness bracelets. Her goal is to increase awareness for celiac disease while raising money for Celiac Disease Foundation (CDF). “Skylar’s commitment to raising awareness of celiac disease and the need for a cure is an inspiring example of how every child has the power to make a difference,” says Marilyn G. Geller, CDF’s CEO. “Ending the needless suffering of millions with celiac disease is a massive undertaking. Through efforts like Skylar’s, together we can improve the quality of life and the long-term prognosis for those we love.” Since last fall, Skylar has raised about $3,000 to support CDF’s goal of finding a cure; looking ahead, she plans to donate proceeds to the Celiac Disease Center at Columbia University in New York, as well.

And Skylar’s not messing around when it comes to style: Her wares are a far cry from de rigeur rubber charity bands. She—along with the help of her squad: her mom Shari, sister Hailey, aunt Jaime, cousins and grandmother—hand-makes each bracelet out of a range of colored gemstones in both adult and kid sizes. Skylar’s aunt, Alisha Grimm, a jewelry designer, lends her expertise. “So many people—myself included, prior to Skylar’s diagnosis—are naïve about how much of an impact celiac disease has on a person’s day-to-day life,” Alisha says. “And it upsets me that there are people who think it’s not a legitimate disease. So when Skylar asked me if we could make bracelets to raise awareness and funds, I said absolutely. I’m just so proud of her.”

“I just want to help find a cure,” says Skylar. You can find out more about the bracelets and how to order them by visiting The Skylar Project’s Facebook page. With Celiac Awareness Month coming up in May, it’s the perfect time to wear them
as your celiac badge of honor.

Jessica Press is a writer whose work appears in Redbook, Parents, O, The Oprah Magazine and more.

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Follow the Gluten-Free Bread Crumbs

For the past 21 years I’ve ground every bread crumb used in gluten-free recipes for my daughter.

The two of us just made another batch, breaking what I call the “ends “of the breadgluten-free bread crumbs (here in Baltimore they’re called the “heels”) into pieces and feeding them into the food processor. Since we dry the bread out first, it’s a workout for my sturdy Cuisinart. The motor heats up, and the tiniest crumbs escape in a fine spray that dusts the counter top.

I couldn’t begin to count how many pieces of gluten-free bread I’ve re-purposed this way. In the beginning it was a necessity. There was no such thing as store-bought gluten-free bread crumbs when my daughter was diagnosed with celiac disease as a toddler. That remained true through her childhood, though specialty gluten-free brands started to appear in the last few years.

But I was surprised to find a mainstream brand, 4C, is now making two varieties ofbread crumbs 2 gluten-free crumbs, plain and seasoned – just like their wheat-containing version. They’re made with rice flour on a dedicated gluten-free line in a building separate from the one where the gluten-containing crumbs are made. They’re certified by the Gluten-Free Certification Organization run by the Gluten Intolerance Group.

As Celiac Awareness month kicks off today, I’m following the bread crumbs as a way to measure how far we travel in the gluten-free world from May to May.

Will my daughter and I stop making our own bread crumbs? It’s unlikely as long as there are some unused ends available. But it’s nice to have a readily available choice, especially when our homemade supply has run out.

I’m celebrating the growing number of choices available to people with celiac disease during this month of awareness. You’ll find lots of choices for many gluten-free products in your supermarket, wholesale club, health food and discount department stores.

Even more exciting, choices about how to manage celiac disease are on the horizon.

In few Mays you’ll probably be able to decide whether you want to take a pill to supplement the gluten-free diet. Most drugs in the works would help reduce intestinal damage and consequent symptoms from exposure to cross-contamination, when you eat out in a restaurant for example.  They would also help people who continue to have symptoms even on the gluten-free diet.

No one says you would have to take a pill, but you would have a choice once one  makes it out of clinical trials and onto the pharmacy shelf.

Growing awareness promoted by celiac disease support groups and their many local chapters, by gluten-free companies, bloggers, consumers, medical professionals and magazines like Gluten-Free Living is making more options available.

I realize there’s been so much change in availability that for  growing percentage of people on the gluten-free diet the days of no ready-made gluten-free bread, bread crumbs, rolls, bagels, pizza, pretzels, soup, burritos and more are just a story they hear from old timers.

That’s progress and that’s what this month is all about.