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hi, in talking to my sister in law recently I found out that my niece - my daughter's cousin - has benefited from a gluten free diet. Several years ago they thought her problems stemed from Lyme disease but antibiotics did not treat it. My niece does not have a diagnosis of Celiac but has suffered from persistent generalized systemic syptoms, like chronic fagique, bloating etc.

In our conversation the subject of genetic testing came up and my niece is very interested in this.

I have started my reading on this - its a very detailed and potentially confusing topic - but I did come across this excellent explanation.

http://www.enabling.org/ia/celiac/cel-hla.html

now, I suspect that my daughter and her cousin probably do not have Celiac - my daughter had negative endo and bx 6 years ago - but I do feel they have non-Celiac gluten intolerance.

I am wondering if anyone has read of HLA types that have an association with NCGI?

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Although the blood test is a great place to start, a genetic test (for HLA-DQ) can be very useful when you still have questions. Typically, the two genes that are most strongly associated with celiac disease are DQ2 and DQ8. It doesn't mean you HAVE celiac disease if you have one of those genes... just that your risk is higher. To answer your question about NCGS... the authors of "Dangerous Grains" argue that the only HLA-DQ types that are NOT gluten-sensitive are the DQ4s. The DQ1 subtypes (DQ5 and DQ6) are associated with neurological problems... ataxia, neuropathy, MS, headaches, etc... and the DQ3 subtypes (DQ7, DQ8, DQ9) are associated with type I diabetes and the immune complex disorders (lupus, RA, Sjogren's, etc...). Someone with DQ9, for example, could have a lot of gluten-related health problems and never get a positive result on a blood test. Same thing if you're IgA deficient. In certain situations, the genetic test can be very helpful.

If your niece does get the test, have her post the results on here!

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thank you for the reply!

did you use Enterolabs for your typing?

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I did use Enterolab, which seems to be the cheapest. It takes about a month from the time you order the test until you get the results. The downside is that they only type the beta parts of your genes... sometimes it's helpful to know the alpha parts too.

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uh....can you explain the alpha nd beta part of your reply? (or point me to a reference)?

Many thanks for your response!

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About the DQ, go to wikipedia and type in HLA DQ and you see a very good chart of the most common alpha and beta chains.

You can follow the links to the different DQ types from there.

Useful is also the HLA DR page.

The good thing with Enterolab is that they do tell you your results, instead of positive or negative for DQ2 or 8.

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Thanks, good reference.

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