questions about symptoms & experience pre-testing/diagnosis

[gabby77]

Hi all, I'm new here, suspected celiac awaiting blood tests next week, with some questions about others' experiences and symptoms before diagnosis. 

I am 41, diagnosed with Hashimotos 5 years ago, tested for celiac shortly after with no detectable antibodies, but no repeat tests for celiac in the past 5 years. Off and on Paleo/auto-immune protocol for the past five years due to what I'd thought were Hashimotos symptoms persisting, but which recently I've started to suspect as celiac symptoms. Just within the past two or three weeks I've been suddenly hit with intense fatigue, lethargy, pain, abdominal swelling, depression symptoms, gurgling stomach, abdominal pain,l etc. Going for blood tests next week, and because of this have been back on gluten and pretty seriously miserable as a result. However, my symptoms don't seem to be 100% in line with "classic" celiac, so I wanted to post here to ask about others' experiences.

I'm really curious if anyone has had symptoms comparable to my own - some of these have been mild for a long time but have just kicked into overdrive in the past weeks or months. To give the full gory details, I have persistent constipation (typical with Hashimotos) but within the past 6 months this has begun to alternate with diarrhea (only once or twice every week), sometimes accompanied with severe cramping and abdominal pain, sometimes just severe abdominal pain (often a stabbing or twisting pain) with gurgling gas, etc, sometimes without any notable BM event. Painful abdominal swelling after eating, like 4-5 months pregnant looking, especially if deviating from Paleo/AIP. Tons of joint pain, from the largest joints (hips, knees, shoulders) to fingers and toes (RA and lupus have been ruled out by blood tests and Rheum exam). Muscular pain as well, particularly back/shoulders/neck, and muscular weakness. TONS of brain fog and confusion, especially when back on gluten like right now. Extremely sensitive/painful teeth, with anything hot, cold, or sweet. Major fatigue and lethargy, and recently some depression as well. Also this past week, with re-gluten-ing, a lot of dizziness and headaches. 

Does this sound like anyone else's experience prior to being diagnosed with Celiac Disease?

Thanks so much for your reply

[ravenwoodglass]

You do sound like one of us. How long have you been back on gluten and were you fully gluten free on the paleo and AIP diets? I ask because if you were gluten free you should be back on gluten for up to 12 weeks before your blood tests although an endoscopy could be done sooner.  Be sure to have the doctor also do a full CBC along with vitamin and mineral panels including B12 levels.

I hope you get some clear answers but sometimes the body tells us what tests can not so do be sure to do a strict gluten free trial for at least a couple months when all celiac related testing is done.