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lyfan

If I don't have the HLA-DQA1 and HLA-DQB1 genes, can I have celiac?

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I have something that appears to be celiac, long established and without a doubt. But back 15 years ago, "see if you're better when you don't eat gluten" was just as definitive, and a lot less invasive and expensive, than going to one of the (literally) two or three docs in the US who would perform endoscopy and everything else.

So I've been on a gluten-free diet (with the usual long learning curve and hidden gluten issues) for years. Now, I see that some labs have a comprehensive celiac test panel that I can have easily and cheaply done, which would apparently mean I need to poison myself with gluten for 12 weeks (!) beforehand to ensure a response. On the bright side, that would mean I could enjoy a Guinness again.(G)

But I've also had one of the popular genetic test programs done, and they say ABSOLUTELY that I do not carry either the HLA-DQA1 and HLA-DQB1 genes, which should give me a zero percent probability of having true simple celiac.

My question being, if that genetic result is "absolute", does this mean I might as well skip any further testing, since non-celiac wheat sensitivity or any other "celiac-ish" problem is really only going to come back to "Yeah, just don't eat gluten, that's all you can do and the rest isn't anything really meaningful to your lifestyle or future" ?

Or are there issues that might include celiac, even though I don't have the HLA-DQA1 and HLA-DQB1 genes? 

Trying to do some research before chasing down one of the (thankfully now MANY) doctors who deal with celiac these days, but they often still prefer a gold standard and endoscopy, and I have sound reasons to prefer not to do that unless there's an actual need and gain to be had from it.

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Hi!  

I am confident that your lab results are accurate.  What is not clear is that there might be are some other small gene pools that have yet to be identified that can be linked to celiac disease or maybe Non-Celiac Gluten Sensitivities (which is not well known or studied, but most doctors suspect it is very real).  

Just 20 years ago celiac disease was not heard of in the US.  It was consider rare and affected kids who looked classically malnourished.  Then it was decided it was an autoimmune issue and that you could be fat, skinny, symptoms or no symptoms, constipated or suffer from diarrhea.  Then everyone said it was a European thing.  Now experts have found many areas in the world who have populations with celiac disease.   

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4807782/?report=classic

So much is still unknown about celiac disease.  

Like you, my hubby went gluten-free per the advice of two medical doctors.  The diet worked!  Does he have celiac disease?  We will never know because he refuses to get sick for months.  Oddly, I was diagnosed five years ago.

Why is it important now?  My huband’s doctor’s accept his need to be gluten free.  His recent hospital stay went went and they fed him gluten free foods.  What is going on with you?  

 

Edited by cyclinglady

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Nothing relevant is "going on" now, except I'm trying to catch up on all things vaguely medical and get a full and correct set of information. Last time I looked into blood testing, a couple of years ago, it was done at great cost in only a few specific labs. Now, just this past year, I find that at least one lab chain (which I'm covered for) does the test as a normal procedure, so what's happening "now" is that the blood testing has become affordable and easy. The genetic testing also was incredibly exotic 20 years ago, even 15 years ago, so I never had that as part of the initial diagnosis. But since I do have that information now, why not try to find out exactly what the problem is? Now that there are more than six doctors on the planet who study it.

I think 20 years ago there was one doc in Australia, one in Japan, one on the west coast of the US, and Peter Green in NYC, and that was about the total world knowledge or interest in celiac matters.

My own gold standard of diagnosis was pretty simple. After a coupe of years of increasing bouts of severe cramps and explosive diarrhea, I had nothing to eat all weekend except a package of Melba toast. Universally suggested for gippy tummy, right? And while I was asking myself "What can be upsetting me about Melba toast?!" I heard on the news that the Pope had just refused to grant papal dispensation to a young girl in New Jersey who could't take the wheat communion wafer. His response was that rice was unacceptable, and besides, the wafer didn't contain any wheat once it got in her throat, you know, it transmogrifies into the gluten-free body of Christ.

DING! Melba toast, wheat. Then it only took another ten years to find *most* of the hidden wheat in unlabelled foods....

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To be clear, I know very little about the genes associated with celiac disease.  My diagnosis was based on antibody testing and biopsies, so no reason for me to study it.  

Good luck on your research and please share!  

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