I had to giggle when I read these posts. Not because I am laughing at you but because I am totally with all of you in this. My celiac was "inactive" for 33 years. When it finally became "active" with GI pain, D, N, and V.. I ended up in the ER 7 times in the course of 3 months before I was diagnosed. And once, I got taken by ambulance because I fainted in...
I got pretty sick before they finally diagnosed me (GI doc was the last specialty consult I had before I was going to be shipped to psych) and am on a slow road to recovery. Thus, I see a GI doc and an internist for my follow-up. GI is about 2x a year. Internist about every 2 months or so. I am not the norm in terms of follow-up (I think?) but an example...
I had this pain for 4 months.. the docs told me they could not find anything wrong. I did my own research and have come to the conclusion that the pain was located inside my small intestine and was related to gluten ingestion. More specfically, that the pain was coming from the food not being able to be digested properly and was inadvertently "leaking" out...