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Hey Everyone!

Been celiac for 6 years, and it's my first time on a forum. 

I assume my story is the same as most of yours: I was really sick and skinny and bloated, got diagnosed with celiac, went gluten-free and felt amazing, then slowly, but surely, the symptoms and elevated antibodies returned, no matter how OCD I am about avoiding cc. Basically I have what they call Non-Responsive Celiac disease. 

I'm wondering, is there something ELSE that I can do? Clearly the gluten-free diet isn't enough anymore. I know I'm not alone in this experience. And I know doctors don't have any advice besides the gluten-free diet (and the new celiac drug that is apparently in phase III)). But do you guys know of any other tricks? 

I went on anti-anxiety SSRIs for a bit to help with my anxiety problems, and that really helped my celiac. But now that I've sort of developed a tolerance to my low dose, the symptoms have returned. Anyone else try this? Or low doses or steroids/anti-inflammatory drugs? 

I'm really sick of feeling sick. I even tried the Fasano (Gluten Contamination Elimination Diet) for 3 months, but it didn't really work. Any suggestions or tips would be much appreciated! Or even the names of doctors who have helped you!

 

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Dear Weary,

I am so sorry that this is happening to you!  ?. 

I get the OCD thing.  Are you sure your meds are gluten free (dumb question, but had to ask)?  Have other AI issues been ruled out?  Did they do a follow-up endoscopy/colonoscopy/pill camera?  

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Hi Weary,

I think what you are talking about is refractory celiac disease.  Refractory celiac disease is when the immune system does not stop attacking the gut villi even in the absence of gluten for a long period of time.  I don't know a perfect treatment for that condition, but sometimes people use enteral (tube) feeding.

 Refractory celiac disease is pretty rare so not many members have direct experience with it.  I posted a link to a thread started by glutenwrangler who used enteral feeding.

http://patients.gi.org/topics/enteral-and-parenteral-nutrition/

I think in glutenwrangler's case they thought he had refractory celiac disease but eventually were thinking he had eosinophilic esophagitis.  But glutenwrangler hasn't been around the forum for years.

I've read about people with Crohn's Disease using low dose naltrexone as  treatment.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3962576/

I think if you have a serious food problem doing the Fasano type diet for a year or more might make sense.  Maybe give your immune system more time to settle down?

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I think GFinDC has some good suggestions for you & I know you don't want to hear this but I will ditto what he said about the Fasano diet. I think you need to be on it longer than 3 months. After all, in the trials he was part of, the diet was to be adhered to for 3 to 6 months. I think the majority stayed on it for around 4.5 months. Really, I think you should go back to it & do a minimum of 6 months but more likely 9 mos. to a year. I know it sucks. I know it's going to be a royal pita. But being sick is a royal pita that sucks big time.

One thing you can do is to make home made bone broth. Ultra nutritious & helps heal the gut. Google how to make it. Roast the bones first though even if the recipe doesn't mention that. It will taste far better and be better. 

Do you have a shared kitchen? Do you EVER eat out? Do you eat ANY gluten-free processed foods? Check your meds.

{{{{{{{{{{{{{{{{{{{{{{HUGS}}}}}}}}}}}}}}}}}}}}}}}}}}}

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