Dealing with symptoms while awaiting diagnosis?

[animalgames]

(Sorry in advance for the million paragraphs.) For background I've been having chronic GI symptoms for a couple years (first went to get checked out for chronic nausea, stomach pain, diarrhea/constipation, bloating, loss of appetite in Jan 2019). If it's relevant, in 2020 I had an upper endoscopy because I was having stomach pain and I was told I had gastritis (no H. pylori) and prescribed omeprazole + had to cut rich and acidic things from my diet (coffee, tomato sauce, fatty/fried foods, etc). This only helped with my stomach pain, so I had other tests done, one being a Celiac test from stool that I had done in 2021, which came out as a "weak positive." My most constant symptoms are nausea, bloating, early satiety, constipation, diarrhea or steatorrhea, and low appetite. I rarely experience any pain, but my nausea + low appetite + early satiety makes it difficult to eat.

I recently had a full abdominal CT scan (notably at the ER because of suspected appendicitis, which I turned out not to have), and everything was normal (at least, there was nothing that would've been the ER's business to treat). My metabolic panels have been consistently normal for the past few years as well.

I've been having what appear to be malabsorption symptoms of varying degrees (some more consistently than others) for a while, and I didn't think they had anything to do with gluten, since there were days where I could eat gluten and it wouldn't make me feel any better or worse than I already did. The steatorrhea definitely isn't constant, sometimes I go and it will be completely normal + regular (but this is usually short lived), sometimes I'll be constipated, etc. 

I recently tried going gluten free for about a week because I was having a bout of very painful steatorrhea, which was new to me (and the reason I was sent to the ER) and after all my tests showed yo negative, a doctor told me I should do an elimination diet while I waited for an appointment with a GI I was referred to, which sounded reasonable to me. I went gluten free for about a week and I couldn't tell if it was helping or not. However, the first day I started eating gluten again I was hit with the worst nausea, bloating, and brain fog of my life, and it's been a few days and I'm still feeling nauseous and bloated, though the brain fog part has gone down significantly (but not completely). It's weird because I didn't feel 100% better while off the gluten, but the past few days have been comparatively awful. I haven't eaten gluten since that day, which was about 5 days ago. Is it possible for someone with Celiac to react that severely to eating gluten after not having eaten any for only a week?

I'm definitely going to schedule a doctor's appointment in the coming weeks, but I don't know if this sounds like Celiac or not, or if I should specifically ask for a Celiac test. I would provide more info about the weak positive, but I recently moved cities and had to find another doctor, and I can't access my old records online. What I remember is my doctor at the time told me it didn't mean I had Celiac, and I took her word, but I think it's possible that might've been overlooked or underestimated. 

I'm having a hard time finding answers, but my main priority is trying to control and deal with symptoms in the long term, since they're extremely frequent, disruptive, and unpleasant, and I don't know if there's anything I can do apart from avoiding gluten. 

[trents]

You need to get testing done specifically for celiac disease which produces characteristic antibodies in the blood: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

But you would need to be eating regular amounts of gluten (equivalent of 2 slices of wheat bread daily) for 6-8 weeks for the serum testing to be valid. Going off gluten for a few days as you have done is not long enough to tell if it's the culprit in your problems.

You can also have an upper GI with biopsy of the small bowel lining to check for celiac disease. That is the gold standard test and only requires eating gluten for 2 weeks before hand.

[Scott Adams]

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