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Blackwolf added a topic in Gab/Chat Room - To Discuss Anything BUT Celiac Disease / Gluten-Free DietRefractory SprueHello Karen,
Yesterday I logged onto the "board" for the first time althoughI have been receiving the online newsletter for a couple of years. I asked if anyone else had been diagnosed with refractory sprue and Lisa, or Momma Goose, told me I should get in touch with you.
I was in the Mayo Clinic last spring when, after a week's worth of tests they diagnosed my celiac disease as having morphed into refractory sprue. I'd just like to be in touch with one other person in the world who has to deal with this too.
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Blackwolf added a topic in Celiac Disease - Coping WithCollagenous/refractory SprueHello All, I am a long time celiac who was, just last spring, via the Mayo Clinic, greeted with a change in diagnosis from celiac disease to collagenous or refractory sprue. I am wondering if anyone else out there is coping with this? For anyone who might not know, refractory or collagenous sprue is like celiac disease, except that no matter how strictly I abide the non-gluten rule, the damage caused by the disease will continue. Of course if I were to go off the nn.g. diet, the disease would quickly accelerate - not to be redundant, so I continue to maintain, but I have to admit thatsome days are, well, questionable as far as "worth the trouble."
In addition, I also have intractable migraines and Systemic Lupus associated with anitphospholipid antibody and necrotizing vasculitis complications. Fun eh?
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