Just wondering if anyone else has had this experience. I can't seem to find anyone actually talking about it. TLDR; diagnosed via blood test and endoscopy in 2016. Recovered very well, but some digestive troubles started up over the holidays and never went away. Blood test negative but just had an endoscopy showing classic signs of active celiac disease. Anyone experience this?
Let me start of saying I don't really get symptoms of being glutened--I wish I did because it would make it easier to identify the problems and avoid the stuff.
After being very very sick and underweight in 2016 which led to an eventual diagnosis of Celiac disease following thorough blood tests and endoscopy with biopsies, and obvious, very severe mucosal scalloping, I went gluten free. It was hard learning, and I slipped up a few times, but eventually I got there. I was so obsessed with getting healthy I had anxiety dreams about accidentally eating gluten.
In 2023 I had some vaguely gallbladderish issues that couldn't be pinpointed. I had similar symptoms back in 2016 when I was so sick. Eventually it seemed to resolve on its own, but my gastro did due diligence at the time with blood work and endoscopy, all of which looked normal, just some gastritis that had no readily apparent cause. As I said, it seemed to resolve itself.
Last summer I started noticing some reflux, not really acid reflux but reflux. Well controlled by medication. Gastritis/diarrhea/weight loss noticeable starting around November/December 2025. Seemed to peak late December but never really got back to normal. Eventually got more blood work and another endoscopy. Bloods are absolutely fine, but I just had the endoscopy today and there is obvious scalloping in the second part of the duodenum. The doc who did the procedure said "Looks like your celiac disease is back," when I woke up in recovery and then just walked out.
Still waiting on biopsies--it will be at least a couple more days. I am simultaneously frustrated and worried. Frustrated that I had no idea I was glutening myself--and apparently for months if not a year or more--and worried that it could be something like type 2 refractory celiac disease, essentially a pre- or early stage of lymphoma. Like, maybe I haven't been eating gluten and I actually have cancer. I know its not likely to be that, but still, it's nerve wracking. I am so careful, what am I missing?
As it is, I guess it's back to a whole, fresh diet. No packaged foods whatsoever, not even certified GF, as I can't be certain its actually so free of cross-contamination that I'm not reacting to it. Hello potatoes, chicken breast, and whatever seasonal green thing is around.
Has anyone else had this experience? Good recovery, but then a slow descent back into active celiac disease without an obvious cause? No huge warning sign, or maybe just signs you missed? Any advice on what to look for?