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Refractory Sprue

Blackwolf

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Blackwolf Rookie
Blackwolf
Posted

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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Canadian Karen Community Regular
Canadian Karen
Posted

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

  • 11 years later...
moomoo5 Newbie
moomoo5
Posted

I was just diagnosed yesterday with Refractory type 1, about to start imuran

 

ch88 Collaborator
ch88
Posted

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Jpate Rookie
Jpate
Posted

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

 

GFinDC Veteran
GFinDC
Posted

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

cyclinglady Grand Master
cyclinglady
Posted
On 8/4/2018 at 7:03 PM, ch88 said:

Open Original Shared Link

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.  

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    • Jenn D
      Still testing positive after being gluten free for one year ?!!

      By Jenn D · Posted

      Hi. Did your ema levels ever go negative? My son is 2 years in gluten free and they are still positive.  I'm scared he has refractory celiac disease. Please if anyone has any info greatly appreciate it. His ttg is 3 which is considered normal.
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      By MomofGF · Posted

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    • trents
      Not sure if this is Celiac or just a gluten-free intolerance

      By trents · Posted

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    • MomofGF
      Not sure if this is Celiac or just a gluten-free intolerance

      By MomofGF · Posted

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    • Scott Adams
      Query

      By Scott Adams · Posted

      This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
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