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Refractory Sprue

PINKYPAL

By PINKYPAL
in Doctors

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PINKYPAL Newbie
PINKYPAL
Posted

Hello,

I am seeking information regarding refractory sprue.

I was diagnosed with celiac in January of 2007, and my follow-up biopsy this January was normal due to strict adherance to the gluten free diet.

Since the end of April I have severe diarrhea, and yet have made no changes whatsoever to my diet. I am wondering if it is possible to have a normal biopsy in January, and yet possibly have this refractory sprue?

I called the specialist who follows me for celiac and explained how severe my symptoms have been. The receptionist certainly did not seem concerned and made me an appointment for July.

Any information would be greatly appreciated. I am really worried and am unsure of what to do, if anything.

Thanks kindly,

Pinkypal

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lovegrov Collaborator
lovegrov
Posted

Refractory sprue is exceedingly rare to begin with. I'm not a medical person, but if you had a normal biopsy and haven't changed your diet, I'd say refractory is not your problem.

richard

melmak5 Contributor
melmak5
Posted

I went through a very similar situation.

Diagnosed, stopped eating gluten, felt better then got worse... lots of D, 7-10x a day.

I got little help from any medical professional (I went through 4 GIs)

For me, it was soy and dairy. Cutting them out has made a huge difference. (I am still waiting for the holy grail of solid poop day... somewhere in the future)

But I highly recommend trying to eliminate other foods from your diet and see how you feel.

jerseyangel Proficient
jerseyangel
Posted

My first thoughts are either additional food intolerances or a small intestinal bacterial overgrowth (SIBO).

If you are currenty eating soy and/or dairy, I would try eliminating them one at a time and see if that makes any difference.

You can ask your gastroenterologist about the breath test for SIBO.

PINKYPAL Newbie
PINKYPAL
Posted
  • Author

Thanks so much for the replies. I went back to read the article on RS written by Michelle Melin-Rogovin on this website and she mentions that when ruling out RS a colonscopy should be done to see if Lymphocytic Colitis is present. This has me a little nervous because I was first diagnosed with LC by colonoscopy and then diagnosed with Celiac by gastroscopy.

I will take the advice given, while patiently waiting for this re-assessment in July.

Best regards to all,

Pinkypal

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