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2 Celiac Genes But Negative Test Results

cornbread

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cornbread Explorer
cornbread
Posted

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
celiac3270
Posted

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
KaitiUSA
Posted

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
cornbread
Posted
  • Author

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
plantime
Posted

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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    • trents
      Hidden Gluten in distilled vinegar

      By trents · Posted

      Take it easy! I was just prompting you for some clarification.  In the distillation process, the liquid is boiled and the vapor descends up a tube and condenses into another container as it cools. What people are saying is that the gluten molecules are too large and heavy to travel up with the vapor and so get left behind in the original liquid solution. Therefore, the condensate should be free of gluten, no matter if there was gluten in the original solution. The explanation contained in the second sentence I quoted from your post would not seem to square with the physics of the distillation process. Unless, that is, I misunderstood what you were trying to explain.
    • Mynx
      Hidden Gluten in distilled vinegar

      By Mynx · Posted

      No they do not contradict each other. Just like frying oil can be cross contaminated even though the oil doesn't contain the luten protein. The same is the same for a distilled vinegar or spirit which originally came from a gluten source. Just because you don't understand, doesn't mean you can tell me that my sentences contradict each other. Do you have a PhD in biochemistry or friends that do and access to a lab?  If not, saying you don't understand is one thing anything else can be dangerous to others. 
    • Mynx
      Hidden Gluten in distilled vinegar

      By Mynx · Posted

      The reason that it triggers your dermatitis herpetiformis but not your celiac disease is because you aren't completely intolerant to gluten. The celiac and dermatitis herpetiformis genes are both on the same chronometer. Dermatitis herpetoformus reacts to gluten even if there's a small amount of cross contamination while celiac gene may be able to tolerate a some gluten or cross contamination. It just depends on the sensitivity of the gene. 
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      @Mynx, you say, "The reason this is believed is because the gluten protein molecule is too big to pass through the distillation process. Unfortunately, the liquid ie vinegar is cross contaminated because the gluten protein had been in the liquid prior to distillation process." I guess I misunderstand what you are trying to say but the statements in those two sentences seem to contradict one another.
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