Collagenous/refractory Sprue

[Blackwolf]

Hello 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?

[Lisa]

Welcome to the board Blackwolf

I just sent you a PM.

[corinne]

I have collagenous colitis. It's the same thing as what you have, but they don't call it sprue, because for whatever reason I don't have celiac disease (although my mother does). Although a gluten free diet doesn't cure it, I do know that diet plays a big role in minimizing progression of damage. I have chosen to eat a very restricted diet (a variation of the SCD -no gluten, soy, dairy, nuts, raw fruits or veggies, red meat etc.) For me, that minimizes my symptoms and I only need to take small doses of Lomotil. Others find relief mostly with medication - particularly Asacol or sometimes Entocort. It is often an up-and-down path. PM me if you have questions.