Dec 11, 2009

10 Important Facts about Celiac Disease and a Gluten-Free Diet

1. Do not start a gluten-free diet until you have been tested for celiac disease (celiac panel blood test and endoscopy if necessary). Testing will not be accurate if you are already eating gluten-free. An endoscopy is necessary to confirm a diagnosis of celiac disease and sometimes to help interpret the results of the celiac panel blood test, which is not always accurate.

2. Many people who test negative for celiac disease are gluten sensitive and find that symptoms improve on a gluten-free diet.

3. Celiac disease is an autoimmune disease, not an allergy. It is not part of food allergy testing. Eating gluten damages the villi of the small intestine, preventing nutrients from being properly absorbed. If left untreated, celiac can lead to osteoporosis and cancer, among other things.

4. The only treatment for celiac disease is a 100% gluten-free diet.

5. Symptoms of celiac disease vary greatly and some people have no symptoms or only mild symptoms, like migraines or fatigue. Symptoms are commonly misdiagnosed as other conditions and there is a lot of misinformation about celiac disease. In fact, 97% of people with celiac disease don’t know they have it, and it can take years and many doctors for people to be correctly diagnosed.

6. Celiac disease is genetic. If one family member has it, others should be tested.

7. Gene testing for celiac disease does not tell you if you have celiac disease. If you do not have any of the genes associated with celiac disease, then you can rule out celiac disease. If you do have some of genes, all it means is that you may develop celiac, but many people with the genes never develop it.

8. While there are countless great gluten-free foods and many restaurants have gluten-free menus, cross-contamination is the biggest challenge for most people with celiac disease. Gluten crumbs in a condiment jar, a cooking utensil or serving spoon that has been used on gluten, and even airborne wheat flour, can all cause a person with celiac disease to have a severe reaction, which can last for days.

9. Eating gluten-free is not a weight loss diet. Many gluten-free breads and other baked goods are not only expensive, but high in fat and calories. Many people with celiac disease gain weight on a gluten-free diet as the body heals and begins properly absorbing nutrients. Eating foods that are naturally gluten-free is cheaper and healthier than processed gluten-free foods.

10. While wheat is a top eight allergen required to be listed on food labels in the United States, gluten is not. Gluten (wheat, rye, barley, and contaminated oats) is found in many products and some products are unsafe for people with celiac disease as a result of cross-contamination. Only oats that are certified gluten-free may be consumed on a gluten-free diet and some people with celiac disease are unable to even tolerate oats that are certified gluten-free.

For more information about celiac disease:

Celiac disease: Have you been tested?

Celiac disease videos, articles, and resources to share

Celiac disease statistics, video, and a gluten-free care package

Gluten-free 101: How can I better understand food labeling?

Don’t miss the numerous useful links on my sidebar in two sections: Newly Diagnosed Resources and Celiac Links.


Heather @CeliacFamily said...

Great list of helpful and important information!

Erin said...

Re: #5. I did not find my migraines and chronic fatigue to be "mild" pre-diagnosis. They were downright debilitating.

marylandceliac said...

Hi Erin. Thanks for your comment. I certainly didn't mean to imply that your migraines or fatigue weren't severe. I was just trying to illustrate a point that for some people, they may accept fatigue and an occasional migraine as part of life and no big deal. Certainly, people who are undiagnosed with celiac disease, may have severe migraines and fatigue like you did and like I also did!

Linda said...

That's a great list of facts. It is unfortunate that many people do not find out about #1 until it is too late and they don't want to go back on gluten.

Theresa said...

Awesome list! One of the things I've discovered lately is that oats actually have a protien that's really similar to gluten, it's called avenin, that's why many coeliac people can't tolerate oats.
Love your blog!

Gerry said...

Hey guys! Can anyone advise please? My 13 year old daughter was diagnosed age 2 and has followed a pretty strict gf diet ever since. I know she has/does occasionally have some foods containing gluten accidentally but she shows no side effects it seems? And often she will eat that'may contain traces of gluten'. What do you think about this not-very-strict approach to the diet?

marylandceliac said...

Gerry - When you have celiac disease, eating any gluten does damage the small intestine, even if you don't show symptoms after ingesting it. It is very important to eat strictly gluten-free to prevent other potential complications from developing. Read this link from the Univ. of Chicago Celiac Center.

Tiffany Youngren said...

Great list! We weren't diagnosed (sorry we broke that rule), but we are so happily GLUTEN FREE.

Helpful site!

~ Tiffany

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