Ok, that was my understanding of it too after some reading, but the fact that the result was under "celiac reflex panel" is what confused me.
I do have some unspecified autoimmune activity going on in my body. My inflammation levels are very high, my complement testing has come back off, and nobody really knows why. A total high Iga isn't a surprise in this case if it doesn't actually hab anything to do with gluten. Going gluten free made my inflammation markers rise rather than go down, so I'm inclined to believe I'm mostly okay with gluten, aside from some digestive issues that I believe are simply from the wheat not being fermented. Sourdough causes me no issue, but soft white bread destroys me for example. Anyways, It's all very confusing and I wish I knew what the heck was going on with my body.
Been celiac for 6 years, and it's my first time on a forum.
I assume my story is the same as most of yours: I was really sick and skinny and bloated, got diagnosed with celiac, went gluten-free and felt amazing, then slowly, but surely, the symptoms and elevated antibodies returned, no matter how OCD I am about avoiding cc. Basically I have what they call Non-Responsive Celiac disease.
I'm wondering, is there something ELSE that I can do? Clearly the gluten-free diet isn't enough anymore. I know I'm not alone in this experience. And I know doctors don't have any advice besides the gluten-free diet (and the new celiac drug that is apparently in phase III)). But do you guys know of any other tricks?
I went on anti-anxiety SSRIs for a bit to help with my anxiety problems, and that really helped my celiac. But now that I've sort of developed a tolerance to my low dose, the symptoms have returned. Anyone else try this? Or low doses or steroids/anti-inflammatory drugs?
I'm really sick of feeling sick. I even tried the Fasano (Gluten Contamination Elimination Diet) for 3 months, but it didn't really work. Any suggestions or tips would be much appreciated! Or even the names of doctors who have helped you!
60% of celiacs with dh test negative on the celiac blood work. Fact.
Many people with DH have no digestive symptoms and only about 40% of them have the positive blood tests (serology) for celiac disease.