Don't Let These Problems Derail Your Gluten-Free Diet

Why Some People with Celiac Disease Have Trouble Staying Gluten-Free

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Medical researchers have been talking to people with celiac disease to learn why some cheat and eat gluten, why others make mistakes and eat gluten by accident, and how some can successfully stick to the diet. One thing is sure: Following a gluten-free diet is extremely challenging.

Below are some reasons celiac patients have given to researchers to explain why they have trouble staying gluten-free.

(The medical terms for sticking to a diet are "adherence" and "compliance.") See if any apply to you. Sometimes, recognizing the problem can be the first step toward fixing it.

"Gluten-free food is expensive."

Gluten-free food can be divided into two categories: foods that are naturally gluten-free (such as fruit, vegetables, fish, and meat) and foods in which gluten is replaced by a gluten-free substitute (such as bread, pasta, cereals, snack foods). A Columbia University study of a variety of U.S. metropolitan areas found that gluten-free substitute foods cost an average of 240% more than their wheat-based counterparts. To make matters worse, gluten-free diets tend to include lots of fresh fruits and vegetables and unprocessed foods, which are very healthy but more expensive than processed foods. A gluten-free diet can indeed be a financial burden, but we have some suggestions to help curb the costs.

"Gluten-free food can be hard to find."

The same Columbia University study confirmed what many of us know: The availability of packaged gluten-free foods, at least in the United States, is limited. Not all stores carry gluten-free products, and those that do often have small selections. Furthermore, the availability of gluten-free foods in stores varies widely by geographical region.

Online vendors and health food stores tend to have larger selections, but their prices are often higher than those as supermarkets. Gluten-free foods are easier to find in most European countries. In developing countries, on the other hand, people with celiac disease are at a severe disadvantage. Once you find sources for the foods you like, the diet becomes easier. We have some suggestions for where to shop for gluten-free food.

"Gluten-free food doesn't taste as good as 'regular' food."

This problem is most pronounced when the gluten-free diet is first adopted. It's certainly true that some gluten-free foods are not going to taste good to you. You'll need to hunt until you find ones that you like, and until you become accustomed to the different flavors and textures of the gluten-free substitutes for the food you're used to. (And remember -- never eat gluten-free bread without warming or toasting it first.)

"Gluten doesn't make me feel sick, so why should I follow the diet?"

Not everyone with celiac disease feels ill after eating gluten.

For those who don't get sick (and even for some who do), it's tempting to eat foods that contain gluten. Here's why you shouldn't cheat.

"It's hard to know when gluten is hidden in food or medications."

Sometimes people unknowingly eat gluten that's hidden in food they thought was safe. Our articles about learning to stay gluten free, avoiding hidden gluten in medicine, and avoiding cross-contamination will help remind you where gluten lurks.

"We didn't get enough dietary counseling."

Ask your doctor to recommend a dietitian who's experienced with gluten-free diets. To learn more about why you should see a dietitian, and how to find one, be sure to read How to Find a Celiac Disease Nutritionist. Some insurance plans will pay for dietary counseling for celiac disease patients.

"We got good information at first, but then we didn't continue to get support."

Research shows that one reason why some celiac patients can't stay gluten-free is that they don't have a support group to encourage and help them. Whether you're newly diagnosed and struggling, or you're a veteran with tips to share, a support group can provide emotional and practical benefits. Here's how support groups can help, and where to find them.

"We got incorrect information" from doctors, dieticians, support groups, or the internet.

There's a lot of misinformation out there. Don't rely on any one source. Instead, get information from multiple well respected organizations. In addition to what you'll learn here on About.com, other good sources include the national celiac disease organizations and the major celiac disease research centers. (All of the medical information here on About.com's Celiac Disease website is drawn from authoritative sources and peer-reviewed medical literature and reviewed by a team of board certified physicians.)

"Dining out makes adherence difficult."

For people with celiac disease, dining in restaurants or at other people's homes can be challenging (or even frightening). Review our tips for dining out, follow our links to directories of celiac-friendly restaurants, and ask your friends and relatives to read our guidelines for hosting a gluten-free guest. You'll begin to realize that dining out can be a happy, relaxing and safe experience.

"Social, cultural, or peer pressure makes adherence difficult."

Whether you're a child in school, a college student, a businessman or woman, or simply a person with well meaning but unsupportive relatives, it takes guts (no pun intended) to explain why you can't have what everyone else is eating and willpower to resist the temptation to join in. Get extra copies of celiac disease literature for your friends and their families, avoid people who are not supportive, find a support group (whether it's one that meets in person or online), subscribe to the gluten-free blogs (or even start one of your own!) and any steps you take to find and build a support system will help you resist the temptation to give in to social, cultural and peer pressures.

"I used to have celiac disease when I was a kid."

Long ago, people thought that only children had celiac disease, and that children could outgrow it. Now we know that celiac disease affects adults too, that it does not go away, and that people who have it need to follow a gluten-free diet for life.

Sources:

Lee AR et al. Economic burden of a gluten-free diet. Journal of Human Nutrition and Dietitics 2007;20:423-430.

Green PH, Cellier C. Celiac Disease. New England Journal of Medicine 2007;357:1731-1743.

Leffler DA et al. Factors that influence adherence to a gluten-free diet in adults. Digestive Diseases and Sciences 2007 Nov 7 [Epub ahead of print].

Rashid M et al. Celiac disease: evaluation of the diagnosis and dietary compliance in canadian children.

Pediatrics 2005:116:e754-e759.

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