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2 Celiac Genes But Negative Test Results


cornbread

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cornbread Explorer

Hello,

I just got my Enterolab results back. My gluten sensitivity test came back as within normal levels, however I have 2 gluten sensitive/celiac genes - HLA-DQB1*0201, 0301. What does this mean? I definitely have a lot of celiac/gluten sensitivity symptoms (severe fatigue, brain fog, depression, irritability, out-of-nowhere nausea/stomach pains) - all of which TOTALLY disappeared upon starting a gluten-free diet and which return within a few hours of consuming even the tiniest amount of gluten (ie: a handful of Cheerios!). In fact as soon as I eat anything with gluten I can feel my heart start to race. I 'tested' myself with a pretzel the other day and I thought my heart would beat out of my chest! These effects (esp. the exhaustion) alone are enough for me to want to stay gluten-free, but I do want to know if I have celiac disease so I know if gluten is actually damaging me or 'just' makes me feel bad. :)

I had been mainly gluten-free for about 5 months before taking the test - could this have affected the results?

I'm really confused... :unsure:

Will staying gluten-free mean I can prevent celiac disease that may otherwise develop? Are there any other reasons I could have had negative test results considering the reactions I have to gluten consumption?

Thanks in advance guys. :)


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celiac3270 Collaborator

Yes--a gluten-free diet for months prior to testing could definitely get you a false negative. Doctors say that you need to be on a gluten-containing diet for at least about three months before bloodwork or you could very easily get a negative result, despite having celiac disease.

Staying gluten-free will prevent celiac disease from showing up in bloodwork and if you do indeed have celiac, and it will keep you healthy (or make you healthier than you are now). If you do have celiac, you should be on a gluten-free diet, not only to eliminate the short-term symptoms of eating gluten, but also the long-term consequences of not adhering to the diet, including osteoporosis, cancer, and type 1 diabetes.

KaitiUSA Enthusiast

Yes being gluten free could cause your levels to go back to normal. You know you have a problem with gluten so avoid it. You could very well be celiac or just gluten intolerant but either way you must avoid gluten.

cornbread Explorer

Thanks for the replies guys. :) The reason I was unsure about the gluten-free diet pre-testing was this was an Enterolab stool test, not bloodwork, and Enterolab say they can detect gluten sensitivity even after you've gone gluten-free.

I know that if gluten makes me feel bad I should avoid it, but I'm sure you understand the 'not knowing' part is really frustrating... :unsure: I feel like I'm being a hypochondriact by self-diagnosing myself! Esp., now the offical results say I'm not G sensitive but my body so totally disagrees. :blink:

plantime Contributor

Since they did find the genes, avoiding gluten now will prevent damage in the future. You know from your own experience how eating gluten makes you feel. If you do eat it, then you will feel the miserable reaction that you have now, as well as start doing damage to your intestines. An ounce of prevention is worth a pound of cure, especially in the case of celiac!

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