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Parents, Friends and Loved Ones of Celiacs
Discussions among parents of kids or babies with CD. Non-celiacs can discuss their experiences dealing with a friend or loved one with the disease.
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Recent Activity
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- mermaidluver22 replied to mermaidluver22's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease2Some inflammation in ileum with celiac?
@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 ...- 1
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- nanny marley replied to nanny marley's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms16Help needed
Hi still the same unfortunately, they had to cancel my colonoscopy due to my trapped nerve , I'm awaiting some kind of scan , it was the nurses who told me to refuse and asked a docter , and I was told to cancel and go back to my consultant , I think because my sciatic nerve is compressed between my herniated discs , the prep was enough I could handle ,... -
- Scott Adams replied to mermaidluver22's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease2Some inflammation in ileum with celiac?
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 ele...- 1
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- mermaidluver22 replied to nanny marley's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms16
Help needed
hi, how are u now? any answers? -
- mermaidluver22 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease2
Some inflammation in ileum with celiac?
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-...
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By mermaidluver22 · Posted
@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. -
By nanny marley · Posted
Hi still the same unfortunately, they had to cancel my colonoscopy due to my trapped nerve , I'm awaiting some kind of scan , it was the nurses who told me to refuse and asked a docter , and I was told to cancel and go back to my consultant , I think because my sciatic nerve is compressed between my herniated discs , the prep was enough I could handle , but the colonoscopy itself , they advised me to seek something different ,due to the position I had to be in and the movements , so I will update Wen I know more , thankyou for asking appreciated 🤗 -
By Scott Adams · Posted
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! -
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By mermaidluver22 · Posted
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 ❤️
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