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moomoo5

Refractory 1

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Is there anyone on here who has been diagnosed with Refractory 1 Celiac? I was just diagnosed. I have had celiac for 8 years, 2 years ago I had an autoimmune attack on my body and my healed celiac become worse than when I was first diagnosed. I made an appt with Dr. Fasano at MGCH and I tried the Fasano diet for 6 months, it did bring some inflammation down and heal some of the villi but not enough. Next he tried my on beudesonide for 4+ months and some of the villi began to unheal. He did a special test to see why this was happening and could see that my immune cells were going out of control and that I had refractory 1.  I did a special gene bloodtest and am waiting for results to see if I can start Imuran. I would love to talk to connect with others who have had this diagnosis as it is so rare.

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Hi!  

I am so sorry that you are dealing with refractory celiac disease.  You are fortunate to have access to a celiac expert!  

Recently, there was a mother who was searching for members who are also dealing with refractory celiac disease.  You might try contacting her using the private message feature on the forum.  Here is a link to her original posting:

https://www.celiac.com/forums/topic/109854-searching-for-refractory-friends/?tab=comments#comment-996063

If you do not mind  what kind of autoimmune attack occurred?  I personally had issues last year after a gluten exposure (unknown source), tooth infection, a cold and the flu all within a month.  I struggled with lingering gut issues, elevated antibodies (DGP and thyroid) and daily hives.  I tried the Fasano diet (with my doctor’s support) but did not get well.  Had a repeat endoscopy.  My villi had healed, but I had autoimmune gastritis which, like my thyroid, I have not control over them.  

Hopefully, some of the new drugs being developed will be available soon.  

http://www.thepatientceliac.com/2015/11/27/interleukin-15-and-celiac-disease/

I wish you well!  

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Welcome to the forum moomoo! :)

There was forum member years ago with the user name of GlutenWrangler.  He doesn't visit much anymore but you could search for his content and maybe get something from his postings.

Here's one of his threads. 

 

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Hi @moomoo5,

I've had a long & winding story in & out of non-responsive celiac activity. Most recently, I have some cellular evidence suggestive of type II RCD, but it's not confirmed. Anyway, I've learned too much about this stuff, and I'm definitely not healing. I can chat with you if you like.

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