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beelzebubble

no hla genes but tested positve via enterolab

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I just ran my 23 and me dna through a bunch of engines.  I don't have the genes for celiac (except one of the contributor genes and a bunch of generic autoimmune ones).  I was "diagnosed" through enterolab around 2001.  When I got my results, I went gluten-free immediately.  95% of my symptoms disappeared within the year.  I'd had daily diarrhea for 13 years and horrible stomach and headaches for 8.  I was so happy to find out what it was.

Now, I'm super confused (and feel strangely saddened) that I can't call myself a celiac anymore.  I've read that there's no such thing as non-celiac gluten sensitivity and yet I greatly improved without gluten and I do not have either of the genes that predispose to celiac.  I do have a horde of genes for crohn's, but that doesn't respond to gluten, does it?  Give me your expertise, folks.

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Yes, new research is showing that NCGS, or NCWS (w=wheat) is indeed a real "thing," and not just made up.  In addition, a lot of people with other autoimmune diseases, from Chron's to Fibromyalgia, and even eczema, are finding that avoiding gluten results in a marked reduction in symptoms.  So... if you feel better and have fewer symptoms when you avoid gluten, then you very well could have a gluten sensitivity!  And who are we to say otherwise?

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This paper has a lot of detail concerning the current understanding of NCGS.

It's certainly real. It needs more research, but the positive news is that research is underway. Hopefully there will be more answers and greater understanding as that work is completed.

In the meantime, don't worry about the reporting of this, it's frequently agenda driven and inaccurate. Try and stick to the science based journals and blogs, there's some excellent ones highlighted here by admin. 

Oh and call yourself what you like! If your happy living gluten free, stick rigorously to the diet and your health issues have resolved what does it matter? I had negative biopsy but will tell a restaurant I'm coeliac to ensure they follow as strict a policy as possible on contamination. My guess is that eventually we'll discover that traditional coeliac and NCGS are all interrelated and just different places on a spectrum. 

All the best!
 

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