kviolin replied to AllisonMcM's topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsYou could request a capsule endoscopy. This will give a view of the entire small intestine. My initial endoscopy biopsies were negative. With the capsule endoscopy, the doctor was able to see extensive celiac damage that was out of the range of the scope. This was done after being gluten free for two months and it was still very evident. Symptom wise, I did not have improvement until 3 months and it was modest at best. 6 months is when I really felt a noticed improvement.
kviolin replied to AllisonMcM's topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsI had a similar experience except I had a full celiac panel. Ttg >100 (positive was >4) and my endomysial antibodies were positive (not to mention low vitamin d, iron, and elevated ALT/AST). My blood work alone is pretty much 100% celiac, but the endoscopy done by my first GI only came up mild blunting (no marsh score or celiac diagnosis from biopsy). Switched to a GI who is much more fluent in celiac and he did a capsule endoscopy. This does not allow a biopsy which is the “gold standard” however he said my damage was very extensive all through the second section (jejunum) of the small intestine which I don’t think would have been reached by the endoscopy.