Has anyone been diagnosed with Refractory Celiac Disease?

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?

@szelis, I'm tagging @dmmeyers62 @saucy who have talked about refractory celiac disease and may be able to share more with you.

You may also appreciate these 2 articles and videos from Mayo Clinic's Dr. Murray:
- 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/
- 10 Things Gastroenterologists Should Know About Celiac Disease https://connect.mayoclinic.org/blog/gastroenterology-and-gi-surgery/newsfeed-post/10-things-gastroenterologists-should-know-about-celiac-disease-1/

@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.

@colleenyoung The first article was very enlightening. All my blood tests come up negative; however, I do have chronic gastritis, collagenous microscopic colitis (not responsive to budesonide), Pancreatic enzyme insufficiency, and now Barrett's esophagus.

One thing I'm grateful for is that I now have a GI who actually believes me. My others kept saying, " Well, I don't know, just stay away from gluten." Even though I have been 100% gluten free for over 20 years

Hi. While I haven’t been diagnosed, I didn’t require follow up endoscopies, it does seem to be something me (and my sister) may have. Even after being strictly gluten free for 5 years, I’m still nutrient and vitamin deficient in many areas. My situation is also complicated by Avoidant/Restrictive Food Intake Disorder, but my mum has for quite some time now speculated that neither me nor my sister healed properly even after strictly being gluten free (with few cases of cross contamination or businesses slacking off), because our numbers have never gotten up to normal they way they should’ve if we had completely healed intestinal tracts

@karmgreen Not having a follow-up endoscopy was my first mistake. When I was diagnosed, I wasn't told I needed to be followed by a GI physician. I think most of what I have could have been delayed if not prevented if I had.