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beachbel

Refractory Celiac Disease

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Hi! I am wondering if anyone else out there is has refractory celiac disease. I have been diagnosed for 3 years with celiac and did not respond to diet (even when my only diet was from tube feeding). I am currently on tube feeding because of a major flare up. I would like to hear from anyone else and what they are being treated with. I am treated with steroids and elemental diet. It is hard because this is so rare that sometimes the drs are unsure what to do. Thanks in advance.

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