Some inflammation in ileum with celiac?

[mermaidluver22]

I have biopsy-confirmed celiac disease and have been strictly gluten-free, but my tTG-IgA is still elevated, so I know I'm still healing. I recently had a capsule endoscopy that showed small erosions and inflammation only in the distal ileum — nothing in the upper small intestine. My GI isn’t calling it Crohn’s yet because biopsies showed only mild, non-specific inflammation with no chronic features. Has anyone experienced celiac impacting their ileum as well? the gi world is so confusing!

thank u ❤️ 

[Scott Adams]

It sounds like you're navigating a complex situation with your celiac disease, and it’s understandable to feel confused by the GI world! While celiac disease typically affects the duodenum and proximal small intestine, it’s possible for inflammation to extend to the ileum, especially in cases of more severe or longstanding damage. Since your tTG-IgA remains elevated despite a strict gluten-free diet, this could indicate ongoing healing or subtle gluten exposure. The ileal inflammation might still be related to celiac, though it’s good your doctor is ruling out other conditions like Crohn’s, given the nonspecific biopsy findings. Some people with celiac do report ileal involvement, particularly if they have refractory disease or delayed healing. Keeping close follow-up with your GI and possibly revisiting your diet for hidden gluten sources could help. Hang in there—it’s a journey, and you’re doing great by staying proactive!

[mermaidluver22]

@Scott Adams

Thank you so much for this thoughtful and encouraging reply 💛 It really helps me feel less alone navigating all of this! I’ve definitely been strict gluten-free, but I’ll admit — in the beginning, I honestly knew nothing about cross-contamination 😅 so it’s very possible my gut is still healing from that. I feel very abnormal because I am not a typical celiac or a typical Crohn's, so it makes me feel very stuck.