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Has anyone been diagnosed with Refractory Celiac Disease?
Digestive Health | Last Active: Jul 1 7:35am | Replies (6)Comment receiving replies
I had to look up “refractive” type of Celiac Disease. I found that in rare instances, the intestinal injury of celiac disease doesn't respond to a strict gluten-free diet. You must be really frustrated and hope testing will provide some direction. I imagine you have been trying anything and everything, not seeing improvement.
Mayo Clinic resources
- What To Do When A Gluten Free Diet Doesn’t Work?
https://connect.mayoclinic.org/blog/gastroenterology-and-gi-surgery/newsfeed-post/what-to-do-when-a-gluten-free-diet-doesnt-work-1/
- Celiac Disease Overview
https://www.mayoclinic.org/diseases-conditions/celiac-disease/symptoms-causes/syc-20352220
Specifically to Refractory Celiac, I found a related article published by American Gastroenterological Association (AGA) you may be interested to review as you wait for others to comment:
- AGA Clinical Practice Update on Management of Refractory Celiac Disease: Expert Review
https://www.gastrojournal.org/article/S0016-5085(22)00967-2/fulltext/
If you are comfortable, would you share more about what has brought you to this point? How are you feeling, physically and emotionally? Do you already have a Celiac diagnosis? What does your testing involve?
Replies to "I had to look up “refractive” type of Celiac Disease. I found that in rare instances,..."
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@jlharsh you are correct. Every biopsy (25 years) I have had shows the Celiac even though I have been 100% gluten-free. All my labs show no gluten responses. The next is a stool test to verify I'm not getting any unidentified gluten. I have also now been diagnosed with Barrett's esophagus. Basically, my GI is screwed up.