Posted 11/7/2016 7:40 PM (GMT -8)
I can see that you are still struggling as to the "why" your duodenum folds are decreased even though you have been gluten-free for six years. The pathology report from your recent endoscopy shows intact villi, right? Remember, the small intestine is vast (size of tennis court when stretched out flat). Patches of damaged villi can be easily missed. Not much is written about the folds which normally are associated with celiac disease, but can be attributed to things like Crohn's Disease. Maybe your doctor can order a pill camera to help rule out things like Crohn's which you can have in addition to celiac disease. My own niece was negative for celiac disease but a pill camera caught her Crohn's just at the end of her small intestine. She did not even display any of the typical Crohn's symptoms either. Back to the folds...maybe they have not healed because of your other intolerances or hidden sources of gluten. Believe me, I have been Glutened twice and have NO clue to the source. I even suspected a product that was labeled gluten-free. Maybe the villi has healed enough, but not enough for the folds. Consider the Fasano diet (dr. Fasano is a leading celiac disease GI at Harvard/MA General). Then just give it time. Takes me three months to resolve a glutening (as documented by my antibody levels). Finally, the reality is that 2/3 of adults and 20% of kids (the kids stat was just released) do not heal, but their symptoms might. Why? Probably because it is really hard to avoid gluten even for those who are really on top of the diet, but science doesn't really know. So, those folds might never improve. Focus on being gluten free. This is a really frustrating disease! Hang in there!