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Refractory Sprue

ryebaby0

By ryebaby0
in Related Issues & Disorders

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ryebaby0 Enthusiast
ryebaby0
Posted

I just wondered what your experiences with GIs regarding "refractory sprue" are. We had a consult with an experienced celiac GI and I was surprised that the (apparent) current thinking/research is that there really is no such thing as "refractory sprue" -- if you don't respond to a strict gluten-free diet clincally and/or pathologically, then by definition you don't have any form of celiac sprue, you have some other autoimmune problem manifesting itself as a celiac look-alike. (probably autoimmune enteropathy). I couldn't believe that after months of a gluten-free diet now we're being told that it may not be neccessary at all (or at least until my son heals, which will probably take the better part of a year)

Joanna

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    • trents
      Could this be a new intolerance

      By trents · Posted

      Unfortunately, the development of celiac disease usually is not an end in and of itself. It usually brings along friends, given time. It is at heart an immune system dysfunction which often embraces other immune system dysfunctions as time goes on.
    • Celiacpartner
      Could this be a new intolerance

      By Celiacpartner · Posted

      Thanks so much for the responses. I will urge him to go for further investigation. To be 48yrs old and develop a new allergy.. ugh, As if celiac disease isn’t enough! 
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      Could this be a new intolerance

      By trents · Posted

      This does not seem to be an anaphylactic response but I agree it would be wise to seek allergy-food sensitivity testing. You might look into ALCAT food sensitivity testing.
    • Rogol72
      Could this be a new intolerance

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      @Celiacpartner, I agree with Scott. We have a food festival yearly in the town I live in, with artisan food stalls everywhere. I spoke to the owner of one of the artisan burger stalls, enquiring if the burgers were gluten-free when I said I was Coeliac ... he said he had a serious anaphylactic allergy to fish himself. He possibly carries an epi-pen or two everywhere he goes. I would go see an allergist as soon as possible as suggested.
    • Scott Adams
      Could this be a new intolerance

      By Scott Adams · Posted

      After years of stable management, developing new symptoms to historically safe foods like nuts and fish strongly suggests a secondary issue has developed. It is highly unlikely to be a new gluten issue if the foods themselves are certified gluten-free. The most probable explanations are a new, separate food intolerance (perhaps to a specific protein in certain nuts or fish) or a true IgE-mediated food allergy, which can develop at any age. The symptoms you describe—cramps and the urge to vomit—can be consistent with either. It is crucial he sees an allergist for proper testing (like a skin prick or blood test) to identify the specific culprit and rule out a serious allergy, as reactions can sometimes worsen with repeated exposure.
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