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What is Celiac Disease?
Celiac disease (aka coeliac disease) is a genetic autoimmune disorder where ingesting gluten (a protein in wheat, barley, and rye) triggers an immune response that damages the small intestine's lining. This damage leads to inflammation and atrophy of the villi, tiny finger-like projections in the intestine responsible for nutrient absorption. As a result, individuals with celiac disease may experience symptoms like diarrhea, bloating, fatigue, and malnutrition. Over time, untreated celiac disease can lead to more severe health problems, including anemia, osteoporosis, weight loss, and increased risk of certain cancers. A strict gluten-free diet is the only effective treatment. Celiac disease is an autoimmune disease, not a wheat allergy. It's also different from non-celiac gluten sensitivity, gluten intolerance, or sensitivity to gluten.
My Long Journey to Celiac Disease Diagnosis
Like many people, I spent a lot of years, a lot of dollars, and endured many tests and misdiagnoses, before doctors finally discovered that I had celiac disease (also known as coeliac disease or celiac sprue), and needed to eliminate gluten and all gluten-containing ingredients from my diet. Gluten is a protein found in the three main gluten-containing grains: wheat, rye, and barley; and is often hidden in processed foods, and things like soy sauce and beer...[READ MORE about my long and winding road to a celiac disease diagnosis and recovery.]
Gluten-Free Diet
To treat my celiac disease I had to go on a gluten-free diet for life. That meant learning to read food labels to avoid gluten ingredients, and eating a diet of mostly naturally gluten-free foods like meats, fruits, nuts, vegetables, and packaged foods only if they are certified gluten-free or labeled gluten-free, for example gluten-free breads made using gluten-free grains.
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Recent Activity
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- lizzie42 replied to lizzie42's topic in Coping with Celiac Disease6
New diagnosis for 3 year old. Help!
Thank you! That's so encouraging. We are planning to go 100 percent gluten-free at home apart from continuing to feed the other kids gluten till they get their tests. I assume that if you have zero gluten in the kitchen eventually cross contamination ends! It does seem overwhelming at first! Once they've been gluten free for awhile is it obvious... -
- Jsingh replied to lizzie42's topic in Coping with Celiac Disease6
New diagnosis for 3 year old. Help!
Hi, I am mother of a six year old who was organized a year ago when she was fine. to answer your question about removing gluten from your kitchen- it will be a mammoth task but your entire kitchen has to be free of gluten for her to be safe. Now I’ve learnt from this forum and others that different celiac patients show different level sensitivities t... -
- lizzie42 replied to lizzie42's topic in Coping with Celiac Disease6
New diagnosis for 3 year old. Help!
Thank you! This is helpful. I actually read her results wrong. It looks like her tTG test was just higher than the test goes (it only goes up to 100 and hers was higher than that so it just said greater than 100 and 0-3 would have been normal). And the 109 was a different iga test (immunoglobulin A, Qn, Serum). The ema was just a straight positive. I think... -
- Deborah123 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms0
Testing
My 5 year old had the blood test in August 2023, which came back negative. We just had a well-visit & he has lost weight over the last 6 months. My new Dr thinks its ENT issues causing his irritability & fatigue. We recently switched pediatricians, and I'm not sure how much to push for a celiac re-test. Obviously I'm not a Dr, but my gut... -
- trents replied to lizzie42's topic in Coping with Celiac Disease6
New diagnosis for 3 year old. Help!
The EMA is an older test that isn't run so often any more. I think it was the original test developed to detect celiac disease. It's fairly expensive to run because, if I recall correctly, it requires mammalian organ tissue to execute. But when it is positive, it's a pretty safe bet that there is celiac disease. I would suggest discussing your options...
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