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Refractory Sprue

hafadai43

By hafadai43
in Coping with Celiac Disease

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hafadai43 Apprentice
hafadai43
Posted

I have been gluten free for four and a half years. I have been careful! My symptoms (mostly bloating that NEVER goes away and irregular bm's, almost constant fatigue and feelings of weakness) have not been relieved. Needless to say it's really frustrating me. I have been getting test after test and procedure after procedure done searching for answers. I have been tested for deficiencies and malnutrition and now I'm on TONS of iron each day among all the other vitamins I already took daily without fail. I have had an ultrasound done to look for tumors or cysts--they only found a very small uterine fibroid, nothing to worry about. I've had my bone density checked, I got tested for gluten contamination--negative, I had a colonoscopy (I am only 22) and they found not much of anything, nothing to explain my symptoms. I'm going to suggest to my doctor, for the second time, that I have allergen testing. I tried to do a food diary for over a month and could find no real pattern or specific food that caused my symptoms. I tried cutting out dairy, then soy....not much of a difference. I have had so many blood tests it's ridiculous...no answers!

My real question is....could it possibly be refractory sprue? I know it's rare and I could be way off....but has anyone else been diagnosed with it? If so...how did you feel? What were your symptoms? I am in need of some real direction and I have been doing research like crazy trying to find some answers of my own to bring with me to the Dr. when I go back on the 12th.... Can anyone help me?

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psawyer Proficient
psawyer
Posted

The member here known as "Canadian Karen" has been diagnosed with refractory sprue.

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If you send her a message I am sure she will reply to it

hafadai43 Apprentice
hafadai43
Posted
  • Author

Thank you so much! I will contact her :)

moonmaiden Newbie
moonmaiden
Posted

See if they will try you on Nystatin for intestinal yeast. It treats the intestines only and doesn't put any strain on the liver. You'll know if you've got intestinal candidiasis because your symptoms will get worse for a few days and then much much better. If the bloating is due to a slow moving gut, you can bet that the yeast (as well as other organisms) will take advantage of that environment. You can also try herbal anti-fungals - there are tons of them out there.

marciab Enthusiast
marciab
Posted

I'd add probiotics to your diet and do whatever is necessary to get your BMs normal / daily. More than likely more raw fruits and veggies, fiber, coffee, some whole healthy fats (not supplements) like EVOO, grapeseed oil or Fish oil would help.

You may have to use a laxative in the beginning to get things moving, but don't depend on them. Eventually you'll learn what foods help you stay regular.

Marcia

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      Negative biopsy and seeking doctor recs in Los Angeles

      By trents · Posted

      If you have been eating the gluten equivalent of 4-6 slices of wheat bread daily for say, 4 weeks, I think a repeat blood test would be valid.
    • englishbunny
      Negative biopsy and seeking doctor recs in Los Angeles

      By englishbunny · Posted

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    • trents
      Negative biopsy and seeking doctor recs in Los Angeles

      By trents · Posted

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    • englishbunny
      Negative biopsy and seeking doctor recs in Los Angeles

      By englishbunny · Posted

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    • trents
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      By trents · Posted

      Okay, Lori, we can agree on the term "gluten-like". My concern here is that you and other celiacs who do experience celiac reactions to other grains besides wheat, barley and rye are trying to make this normative for the whole celiac community when it isn't. And using the term "gluten" to refer to these other grain proteins is going to be confusing to new celiacs trying to figure out what grains they actually do need to avoid and which they don't. Your experience is not normative so please don't proselytize as if it were.
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