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About moomoo5

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  1. 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.
  2. I was just diagnosed yesterday with Refractory type 1, about to start imuran
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