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Coping with Celiac Disease

Share stories, techniques, and information to help others deal with the disease and the gluten-free diet.


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    • Scott Adams
      Since nearly 40% of the population have the genes for celiac disease, but only ~1% end up getting it, a genetic test will only tell you that it is possible that you could one day get celiac disease, it would not be able to tell whether you currently have it or not.
    • KDeL
      so much to it.  the genetic testing will help if i don’t have it right? If theres no gene found then I definitely don’t have celiac?  I guess genetic testing, plus ruling out h.pylori, plus gluten challenge will be a good way to confirm yes or no for celiac. 
    • Scott Adams
      With NCGS there isn't villi damage, so it would not be detected via an endoscopy/biopsy. There also may not be high levels of tTG-IgA or tTG-IgG (sometimes they can be elevated, but in the normal range), but these blood tests may be slightly elevated or even high in people with NCGS: DGP-IgA and DGP-IgG (Deamidated Gliadin Peptide), but, you can still have it even if all of these tests are normal.
    • KDeL
      That all makes sense thank you.    I was within normal ranges - a little on the lower end.  So, the NCGS would still show positive biopsy? 
    • Scott Adams
      Do you happen to have the reference ranges for those blood tests, as they vary from lab to lab? Just the results don't mean much without those ranges. A gluten challenge would be the only way to get a formal diagnosis of celiac disease, and if the idea of eating lots of gluten for weeks sounds horrible to you, then you likely have either celiac disease and/or non-celiac gluten sensitivity, so you will need to decide how badly you want a formal diagnosis. Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS. Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:        
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