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Coping with Celiac Disease
Share stories, techniques, and information to help others deal with the disease and the gluten-free diet.
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Recent Activity
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- Threecents commented on Scott Adams's article in Winter 2026 Issue2Can You Really Trust Gluten-Free Menus? What Every Celiac Needs to Know Before Eating Out
There is a chicken place near me that says they marinate their chicken with beer before cooking. They say that people with celiac have tried it and did not get sick. Any guesses as to whether it is safe? (If I try it, I'll remove the skin first.)- cross contamination
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- Threecents commented on Scott Adams's article in Winter 2026 Issue2
Can You Really Trust Gluten-Free Menus? What Every Celiac Needs to Know Before Eating Out
Just in case, I usually have a Gliadin X capsule before eating at a restaurant, though I really don't know how effective they are.- cross contamination
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- pilber309 posted a topic in Related Issues & Disorders0Burning Sensation in the small intestine
Hello I have been diagnosed Celiac for 14 yrs now and despite ups and downs I've never felt better in terms of what I was suffering pre diagnoses due to being G.F. The one feeling I cant seem to get rid of is a burning sensation in the very part of the small intestine where the villi is. I seem to be noticing it a lot more recently. Has anyone... -
- xxnonamexx posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease0Fermented foods, Kefir, Kombucha?
I have read fermented foods like sauerkraut, pickles, Kefir, Kombucha are great for gut health besides probiotics. However I have searched and read about ones that were tested (Kefir, Kombucha) and there is no clear one that is very helpful. Has anyone take Kefir, Kombucha and noticed a difference in gut health? I read one is lactose free but when tested... -
- SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms7High TTG-IgG and Normal TTG-IgA
Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing...
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Hello I have been diagnosed Celiac for 14 yrs now and despite ups and downs I've never felt better in terms of what I was suffering pre diagnoses due to being G.F. The one feeling I cant seem to get rid of is a burning sensation in the very part of the small intestine where the villi is. I seem to be noticing it a lot more recently. Has anyone had this or have any medical tips about what I can do about it. It doesn't hurt really its just irritating.
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By xxnonamexx · Posted
I have read fermented foods like sauerkraut, pickles, Kefir, Kombucha are great for gut health besides probiotics. However I have searched and read about ones that were tested (Kefir, Kombucha) and there is no clear one that is very helpful. Has anyone take Kefir, Kombucha and noticed a difference in gut health? I read one is lactose free but when tested was high in lactose so I would probably try a non dairy one. Thanks -
Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea. I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
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By knitty kitty · Posted
Blood tests for thiamine are unreliable. The nutrients from your food get absorbed into the bloodstream and travel around the body. So, a steak dinner can falsely raise thiamine blood levels in the following days. Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test. But even that test has been questioned as to accuracy. It is expensive and takes time to do. Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement. Thiamine is water soluble, safe and nontoxic even in high doses. Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease. B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins. It is possible to have deficiency symptoms BEFORE there's changes in the blood levels. Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate. Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf. This form is difficult for the body to turn into a usable form. Only thirty percent is absorbed in the intestine, and less is actually used. Thiamine interacts with all of the other B vitamins, so they should all be supplemented together. Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low. Thiamine is water soluble, safe and nontoxic even in high doses. There's no harm in trying. -
Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine?
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