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Celiac Disease: Hard to Diagnose, Easy to Treat


Headaches, stomachaches and infertility are all symptoms of celiac disease, an immune system disorder that affects the gastrointestinal tract. People with celiac can't digest gluten, a protein, found in wheat and cereal grains. While doctors in Europe have been successfully treating the disease for decades, this has not been the case elsewhere in the world. In fact, it's only recently that celiac disease has been documented outside populations of European ancestry. Now, it's being seen more commonly in India, North Africa, and the Middle East.

Diagnosing the disease and dealing with it remain a challenge. It takes most celiacs an average of nine years to be diagnosed correctly, because the symptoms of the disease vary so widely and because the cause is even more obscure. Often sufferers are dismissed as picky eaters or even hypochondriacs, when all they really need to do is get rid of gluten in their diet.

Still, finally hearing the diagnosis can be hard for many, because it means they have to stick to a strict diet for the rest of their lives. For Alice Bast, though, learning she had celiac disease was a relief. "The doctor said to me, 'I have good news and I have bad news,'" she recalls. "'The good news is we finally figured out what is wrong with you. The bad news is you have to go on this awful diet.' And I looked at him and I thought, 'OK, what is so awful about a diet?'" She'd been afraid she had cancer, so changing her diet didn't seem like a big deal.

Bast harnessed her newfound energy, thanks to her gluten-free diet, and started The National Foundation for Celiac Awareness. Her first task was to understand the medical complexities of the disease. She is quick to point out that the symptoms vary from migraine headaches, acid reflux, anemia and diarrhea, to exhaustion, depression and even infertility. She also points out how quickly those symptoms can disappear.

"Can you imagine people having migraine headaches and have to take drugs every single month and they go on that diet and their headaches go away automatically!" She rattles off other positive changes: "No more running to the bathroom every ten minutes. No more embarrassing gas all the time. Or the fact that they couldn't have any kids. I mean, that's devastating. You go on a gluten-free diet for six months and your reproductive system goes back to normal. It's pretty miraculous."

Last year, Bast's foundation sponsored a gluten-free cooking contest in her hometown of Philadelphia to raise awareness about celiac within the medical community, the restaurant industry, and the general public. Among those attending was Vanessa Maltin, who was diagnosed with celiac two and a half years ago in college.

Two weeks after Maltin stopped eating gluten, she felt significantly better. But she says she was afraid to tell her friends she had celiac, because she was embarrassed by the gastrointestinal issues the disease creates. She was shocked to find that even admitting it to a server in a restaurant could prove problematic. "I was asked to leave a Malaysian restaurant when I was on a first date," she explains. "This guy has been telling me about the restaurant for like weeks and we finally go and they asked us to leave, because there was just nothing that I could eat and they said that I was a health hazard." Maltin thinks that despite her explanation the restaurant was fearful that even a specially prepared meal could make her deathly ill. After that, Maltin made it a point to tell all her friends and colleagues about celiac, and has been pleased by their support.

Maltin now works at the National Foundation for Celiac Awareness. She has written a cookbook for young adults called Beyond Rice Cakes, hoping to give them a new perspective on treating their disease. "There really was no resource available to help them look at the disease as it is: something that doesn't have to ruin your life. You can go out and accomplish your dreams because for the first time in your life you are not sick." She also does cooking demonstrations of gluten-free dishes like eggplant pizza, Indian corn pudding and crispy strawberry creme brulee.

Still, Maltin says, most Americans are confused about gluten. "You go out for brunch and you say, 'Oh, can I have an omelet, you know, no toast?' And they say 'Oh well, we have whole wheat toast.' And you say, 'Oh well, I can't have gluten which means no wheat, barley and rye.'…'Oh would you like a bagel?'" She marvels at how little people understand about their food. "You know, people don't know that pasta is made from wheat. And that's a really big problem."

As doctors in the United States and around the world become more aware of celiac disease through medical journals and international symposia, the opportunities for cooking and dining gluten-free are becoming greater than ever before: from new cookbooks, to alternative menu options in restaurants, to specialized dining guides.

Vanessa Maltin and Alice Bast say more people need to take the initiative to find out if they've got celiac. One of the easiest ways to do that is to get a checklist of symptoms from the National Foundation for Celiac Awareness web site. If you have any of the symptoms listed, it is suggested you follow up with your doctor and get a blood test to find out for sure, and make the dietary changes that can change your life.