Negative biopsy, so what to I do now?

[Guest guest]

My initial TTG IGG/IGA levels were called " early " by one gastroenterologist, " mild " by another, and Dr. Fasano called them " marginal " when he briefly looked at them at the Stanford conference.  Four months of very strict gluten-free diet produced exactly the same levels as when I'd started and only modest change in physical symptoms.   I also continued to have harsh symptoms from various gluten free products including GF Chex, ketchup, white rice, orange juice, etc.  Despite the lack of response to GF diet, and the inconsistencies, the doctors nevertheless kept assuring me that it had to be celiac.So I did a 5 month gluten challenge, just in case the GF diet had done any healing whatsoever (Dr. Fasano suggested it likely hadn't).  Now the biopsy has come back negative/normal, despite 4 doctors' confident predictions.  A part of me thinks " thank goodness! " , but it's tempered by knowing I've been sick for 14 months and there are still no answers.

My first question is, does anyone have a recommendation for a bay area pathologist who is especially experienced in reading celiac biopsies?  That is, not just a good pathologist generally?  From what I've read, that matters, especially if the doctors' previous assessment was in fact correct that this is celiac being caught very early.  Maybe it takes a keen eye to spot damage at this point...?  So I'm wondering about getting a second opinion.

The second question is, any ideas of what to make my next step?  Lactose intolerance and IBS are the alternate conclusions that have been previously suggested.  Lactose is clearly causing problems, but definitely not all of them; and it's always been a poor fit with IBS criteria (e.g. no symptom relief from defecation).  Tests for gallstones and ulcer ruled those out early.  My doctor says his allergist colleague recommended against allergy testing, that there's too little to learn from it and basically not worthwhile in their opinion.  In fairness, it does seems pretty unlikely that I'd have developed several food allergies all at once, after going almost 4 decades with none.  But, I don't know, maybe that's what happens?

I'd really be grateful for this group's knowledgeable and experienced suggestions.  Surely there are others who've run up against the problem of diagnostic ambiguity.Thank you!!  -Carina