My celiac is gone?

I would say that it was at least true at one point in time and it may in fact be true now that I do not have celiac disease. And that would be awesome! But I do have something going on and I would like to see a GI specialist. Can you help me understand why you oppose that?

Thanks that’s extremely helpful. I never know what to say to him, and this will help.

I thought you had to be on gluten for at least 6 months to be tested for celiac. So a positive test is impossible for you right now. So why is your doc saying you don't have it? Were you positive on a blood test or biopsy or both?

I don't see why you can't see a GI doctor anyway!

I would get a new doctor. He/she doesn't seem to know that one has to be eating gluten in order to get a positive celiac panel test (IgA, IgG antibodies, etc). Celiac does not go away, one might become asymptomatic but damage can still occur. I caught H1N1 14 years ago followed by high stress; it triggered inflammatory arthritis and the doctor wanted to start me on a drug regimen. I instead researched diet and saw that going gluten free can help inflammation, so...it took a few days for GI problems to disappear, several weeks for the arthritis to go away, and gone in a few months were skin rashes (eczema, not DH) and enlarged lymph nodes that I'd had for decades. I have the HLA-DQ8 0302 haplotype (which just means I have the possibility of celiac, not that it is triggered). Before H1N1 I was likely gluten intolerant, but the flu kicked it into celiac. About 6 months after going GF I got a GI doctor that thought I had diverticulitis (still don't have that) rather than celiac. I was only on the gluten challenge for a week, he didn't run a celiac panel blood test, and he only took 1 biopsy (negative) of my small intestine. But at least I knew my colon was good because he took a lot of samples from that. The downside is because he screwed up, I have celiac but no formal diagnosis so with many new doctors I have to convince them I have celiac. A celiac diagnosis is also important because some hospitals will only provide GF meals if someone has a diagnosis. The average 14 years ago was 13 years of illness before someone was diagnosed with celiac. @lavendercottage, if you have been GF for 9 years then your small intestine will likely appear healthy, no villous atrophy. As of 8 years ago, I have collagenous colitis (aka microscopic colitis) which is a bit like celiac spreading to the colon. I have kept a food log for 14 years (I'm a scientist, we do those types of things), so when I started having stomach pains and colitis flares I was able to see that I'm now also sensitive to NSAIDs (aspirin and such), and to a lesser extent legumes, cashews, and pistachios (but not dairy). Strange the way our bodies treat us. So the colitis is also controlled with diet. Consider a elimination or FODMAP diet to see if you have additional nasty foods to avoid. Microscopic colitis is also under researched: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9062845/

Celiac does not go away. If someone with celiac is gluten free then the inflammatory response (antibodies and villous damage) can go into remission. Celiac can become asymptomatic, but the disease is still there. https://www.pennmedicine.org/for-patients-and-visitors/patient-information/conditions-treated-a-to-z/celiac-disease#:~:text=Celiac%20disease%20cannot%20be%20cured,%2C%20rye%2C%20and%20possibly%20oats.

I would have believed you without references 🙂 I was only trying to help someone formulate a preamble to a discussion with her doc. I understood her today she had been diagnosed previously with celiac and now the doc is saying ‘no celiac’. If that is an erroneous representation of her post then throw my comment away. Otherwise you’re wasting your time on me - I don’t have a dog in the fight.

Thank you for replying to her and my comments. I add references because they are helpful for anyone that reads the posts. I have a friend that is an internist, and she told me they only studied celiac disease for about 30 seconds in med school. Unfortunately, those of us with diseases frequently know more about them than the doctors do, so it is great if they are open to discussion and less so when they are not.

Thanks

I learned I have celiac by genetic testing. Have you had that done?

Your doctor is just flat wrong. If you had celiac years ago, you still have it, It doesn’t go away, but if you haven’t had gluten in a long time, you’ll likely be negative for antibodies and any intestinal biopsies should be fine. (They would not be if you’ve had gluten). But, the bigger question is why would doc not refer you to GI if you’re experiencing discomfort? If they haven’t been able to help you especially! I would definitely get a new doctor.