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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
      Persistent isolated high DGP-IGG in child despite gluten-free diet

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      Thanks very much for taking the time to write. I have been reading a lot about this and it definitely is not straight forward. My first port of call is the gene test - probably should have had it done before we left Australia because they don’t run the test in Japan. So I’ve ordered a third party test kit and just swabbed his cheek. Then we start the gluten challenge and see how it goes. 
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