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My Dr agrees celiac tests can be false negatives..

Posted by mtom on May 9, 2019, at 18:57:19

In reply to Re: Celiac,gluten,depression,weight loss correlation?, posted by Hugh on May 9, 2019, at 15:38:39

Thanks Hugh. My GP and Rheumatology specialist, do not believe that there are gluten "sensitivity" tests that work, a sentiment that I've also read from other doctors online, although some disagree (especially those who promote themselves as Functional Medicine specialists - and they often recommend thousands of dollars of tests and treatment protocols). Leaky Gut is big with such practitioners also, I've seen Naturopaths who push elimination diets such as FODMAPS and Paleo. But real evidence that these are helpful seems to be anecdotal at best.

However, my GP did confirm that someone can test negative for Celiac, repeatedly, and still have it - just like my acquaintance. There is a genetic test that tests for the 2 genes most often associated with Celiac - HLA DQ2 and DQ8 - and she believes this is a better test than the blood test.

My friend did not do these tests. However after testing negative 4 times over many years (despite symptoms), she developed a Celiac rash. She then did a Gluten challenge - eating "lots" of bread and gluten containing foods for 6 weeks then retesting with the standard blood tests - and this time was positive! It was subsequently confirmed by biopsy.

I have noticed that when I've tried gluten-free for a few weeks, my moderate but often uncomfortable gastrointestinal symptoms improve. However I have not noticed other improvements, but a few weeks may not be long enough. It's difficult to avoid gluten especially on social occasions or eating in restaurants.

I know a couple of people with confirmed Celiac who bring their own food when invited to someone's home for dinner. This is understandable with confirmed Celiac, but seems a bit wacky to others when someone is just self-experimenting. As well as being a huge hassle.




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