I'm tossing this out there to see what ideas people have. I have had chronic health problems for years including but not limited to my personal AAA - allergies, arthritis, and asthma; chronic pain and fatigue; chronic rhinitis and sinusitis; a devastating allergy to mint, menthol, and cinnamon (synthetic - think red hots) that lingered after an attempt to treat my asthma with steroids years ago; and a recent provisional diagnosis of celiac disease. In an attempt to sort out my myriad of problems, I was sent by my internist to a rheumatologist, then a gastroenterologist. I am also under the care of an OB/GYN. So I've run the gamut here. The rheum tried running tests for vitamin D and iron deficiency (both VERY positive) then the TTG antibody (also VERY positive); a small intestine biopsy showed inflammation, so they think gluten is the problem. BUT eliminating gluten from my diet for the last nearly four months has made me symptomatically far worse - more disrupted sleep, gut turning upside down, increased pain, etc. My arthritis is early onset and every female in the family has it including my mother, sister, and aunt as well as several cousins. I also have hypertension, sleep apnea, and GERD of long standing.
My strong suspicion is that gluten is not only NOT "the" problem, but that it is not "A" problem; by that I mean that I have long not been able to tolerate "safe" foods like rice or potatoes nearly as well as the "problem foods" that are full of gluten, and I digest gluten-FULL foods far easier and with less symptomatic result. This leads me to the logical conclusion that the high TTG antibody is a red herring, and that a far more likely suspect is some kind of autoimmune problem.
The question I then pose is, if my systemic inflammation is getting worse (FAR worse) with the elimination of gluten from my diet, what other possibilities can I pose to the diagnostic team to pursue? When I asked the rheum at a 2 month followup appointment (because I was experiencing zero symptomatic relief) what the problem may be, she said "noncompliance". This is of course not only an idiotic answer, given the extraordinary lengths I have gone to in order to eliminate gluten from my diet, even to the point of bringing GF bread to church for communion to eliminate even that tiny dose of unwanted gluten consumption, but heartless as well and not taking an honest look at the clinical situation.
It will be at least another two months before they will do a followup biopsy to see if small intestine histology improvement has occurred. I'm just wondering if anyone has any ideas to bounce off the doctors in the meanwhile.