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Blackwolf

Refractory Sprue

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Hello 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.

Thanks,

Susan Blackwolf

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Yep, that would be me!

I have been totally, 100% gluten-free for over 3 years now, and my bloodwork has come down from way over 100 to the last result of 13 (within normal range), but the last biopsy last August showed complete villous atrophy still. There has been no repair in any way, and have been told there never will be. Also, last year they also found out I have collagenous colitis, which explains why I have had nothing but watery diarrhea for over a decade now (seriously, that's how long it has been since I have had anything solid), and I go usually around 15-20 times a day. It is particularly nocturnal too, it seems to be most active at night......

I have been unresponsive to both budesonide and prednisone. The specialist (I go to a professor at St. Michael's Hospital in Toronto who specializes in celiac) think because I have both refractory celiac and collagenous colitis, it is like a 1 - 2 punch that is just too much for the steriods to be able to overcome.

Does it get me down? Nope. I have been keeping track of this for some time and the research that is ongoing in this particular area is very promising. I have no doubt that in the very near future, the key to unlock this whole mystery on how to tackle this will be found. Of that I have no doubt!

Welcome to the board and any questions, just ask away!

Karen


Karen

positive bloodwork, positive biopsy

Celiac, collagenous colitis, hypothyroidism

endometriosis (at age 20)

spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.

Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs

Rhiannon 8 yrs

Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."

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"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."

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Wheat sensitive. Probably Celiac disease but it could be an allergic response. I get very strong anxiety and then autistic symptoms whenever I eat wheat. It is probably a form of encephalitis (swelling in the brain due to wheat) but I am not sure.  Things that I avoid: All grain, alcohol, eggs, dairy, processed food.

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My name is John I have had celiac disease  since I was  born  but  only diagnosed  with it 6 year's  ago. I  also have refactory type two celiac disease for the past 4 year's  and have got  total  villous atrophy. I have  a Marsh 3c. 

I have been taking budesonide and azathioprine, I also have osteoporosis and anemia.  I have been seeing the  top man in the UK and I go to the hospital  every  6 to 8 weeks  to have  my bloods checked

 

Edited by Jpate
Wrong spelling

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Welcome John!  We are glad you joined us!  :)


Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."

Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.

Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, eggplant, celery, strawberries, pistachios, and hard work. Have a good day! 🙂 Paul

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On 8/4/2018 at 7:03 PM, ch88 said:

This is excellent advice.  Many people with non-responsive celiac disease who have been misdiagnosed with refractory celiac disease have responded on this very strict gluten free diet.  Definitely worth trying. 

Many of us here refer to it as the Fasano diet, named after Dr. Fasano, one of the leading celiac disease researchers.  

https://res.mdpi.com/nutrients/nutrients-09-01129/article_deploy/nutrients-09-01129.pdf?filename=&attachment=1

Edited by cyclinglady

Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test and Endoscopy: March 2013

Hashimoto's Thyroiditis -- Stable 2014

Anemia -- Resolved

Fractures (vertebrae): June 2013

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Diabetes -- January 2014

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