Here’s a link to a well-described case report. Her Searing Gut Pain Suggested Celiac Disease. Why Didn’t Cutting Out Gluten Help?

This 57 year old with ‘presumptive’ celiac disease did not improve with a gluten-free diet.  After an initial self-diagnosis and subsequently an endoscopy that also suggested celiac disease, she did not improve.  While the doctors involved in her care had labeled her ‘noncompliant,’ it turns out she did NOT have celiac disease and improved after the right diagnosis (diagnosis noted at bottom of this post).

My take: There are several entities that can mimic celiac disease (even histologically), including Crohn’s disease, Autoimmune enteropathy, CTLA4 deficiency, and Whipple’s disease (the diagnosis in this case).  When someone is not getting better, the diagnosis needs to be reconsidered.