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Do Any Of You Have Refractory Sprue?

trents

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trents Grand Master
trents
Posted

After disappointing news from my second biopsy in 5 years since dx I am beginning to think I may have refractory sprue. I have reviewed my diet, meds and oral hygiene products for possible gluten contamination and I just don't see any.

Anyone out there been clinically diagnosed with refractory sprue? I want to here about your experience. I am a soon-to-be 58 yr. old male.

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rinne Apprentice
rinne
Posted

Hi. :)

After over two and a half years on a strict gluten and dairy free diet without healing I have switched to the Specific Carbohydrate Diet and am seeing some relief of symptoms. This is the diet originally used by celiacs with better success than just gluten free. Check out Elaine Gottschall's site.

I realize this doesn't answer your question but I don't have an answer for myself I going on the fact that I didn't heal.

A Greek Celiak Newbie
A Greek Celiak
Posted
Hi. :)

After over two and a half years on a strict gluten and dairy free diet without healing I have switched to the Specific Carbohydrate Diet and am seeing some relief of symptoms. This is the diet originally used by celiacs with better success than just gluten free. Check out Elaine Gottschall's site.

I realize this doesn't answer your question but I don't have an answer for myself I going on the fact that I didn't heal.

Dear Rinne,

your post seems very interesting! Thank you for that!

I'm 1 year and a half in a strict gluten-free diet ( Celiac Desease) but I still have some Rheumatoid Arthritis symptoms (without having any positive tests in RA) and some redness on the part of my cheeks close to my ears and upper arms.

Maybe, this diet will give me an answer... I've just bought the book from amazon to try it... I believe that our food is the answer to many...

Thanks again for your post,

Lila

mushroom Proficient
mushroom
Posted
Dear Rinne,

your post seems very interesting! Thank you for that!

I'm 1 year and a half in a strict gluten-free diet ( Celiac Desease) but I still have some Rheumatoid Arthritis symptoms (without having any positive tests in RA) and some redness on the part of my cheeks close to my ears and upper arms.

Maybe, this diet will give me an answer... I've just bought the book from amazon to try it... I believe that our food is the answer to many...

Thanks again for your post,

Lila

Hi Lila:

I am also about 18 months into my gluten-free life and I am in much the same situation as you. While my GI symptoms have cleared, the RA (negative tests) and psoriasis still continue pretty much unabated. I have just started injections of Humira to try to improve it since nothing else has helped. I would love to hear how you do on the Specific Carbohydrate diet. I have sometimes thought of it but never really believed it would make a difference. In fact, have come to the conclusion that I have had the RA and psoriasis so long that they are permanent. So if it did in fact give you relief I would be very interested.

GFinDC Veteran
GFinDC
Posted

You might try looking for posts by GlutenWrangler, I think he has refractory sprue. I am not sure he is on the site a lot though.

beachbel Apprentice
beachbel
Posted

Hi trents, I have refractory sprue. I have had 8 endoscopes in the last two years (about every 3 months) because of the complications and trouble it gives me. I have been hospitalized for it as well. I am treated with Entocort - a steroid - to control my symptoms and calm my immune system down. I am meticulous about avoiding gluten. I never eat out because possible cross-contamination, I keep my dishes separate from the rest of the family, cover my food in the microwave, etc. Even the slightest cross-contamination makes me sick for 5-6 days. When I am on the Entocort I feel much better. The diagnosis of refractory sprue was made based on some biopsy results. Last year when I was on Entocort my biopsy stilled showed some celiac but looked pretty good so the dr had me try going off the medicine. I got sick again about a month later. The dr followed up with another biopsy when I got really sick and found that my celiac disease had really kicked up again. So I am back on the steroid. The doctor has told me I need careful monitoring to watch for cancer. I am still looking for information on treatment options.

Do you have any specific questions? I would be interested in hearing from anyone else who has refractory sprue as well. Are you having any symptoms along with your positive biopsy? If you are I think you should definitely follow up with your doctor and monitor it carefully. Good luck.

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