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Is Positive Genetic Test Enough For Some Of You To Go Gluten Free?


Newbyliz

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Newbyliz Rookie

I just had my second endoscopy yesterday, Tues. Dec. 1st. The doctor said everything looked okay but that I could certainly try a gluten free diet to see if that helps since all of my testing is over. Part of me wonders if I should wait to see what the biopsies say but the other part of me is really ready to give the gluten free diet a whirl. My genetic testing stated I was positive for HLA-DQ2 and a subset of that gene(sorry I don't have the exact wording of the results-this was given to me by my gastro's nurse) which is the only evidence so far that celiac may be playing a part in how I feel. I have tried just about everything else and really am ready to feel better. Has anyone felt that having the genes alone is enough to make them want to at least try a gluten free lifestyle? I have a follow-up with my gastro in 8 weeks which I feel is a good amount of time to give this diet a try. It is sort of strange to know that I posses 2 copies of the HLA-DQ2 gene and that it is lurking in the background. I have to find some peace that even if the biopsies come back normal it may be the best thing for my body to elimate gluten. Any feedback would be greatly appreciated.


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Swimmr Contributor
I just had my second endoscopy yesterday, Tues. Dec. 1st. The doctor said everything looked okay but that I could certainly try a gluten free diet to see if that helps since all of my testing is over. Part of me wonders if I should wait to see what the biopsies say but the other part of me is really ready to give the gluten free diet a whirl. My genetic testing stated I was positive for HLA-DQ2 and a subset of that gene(sorry I don't have the exact wording of the results-this was given to me by my gastro's nurse) which is the only evidence so far that celiac may be playing a part in how I feel. I have tried just about everything else and really am ready to feel better. Has anyone felt that having the genes alone is enough to make them want to at least try a gluten free lifestyle? I have a follow-up with my gastro in 8 weeks which I feel is a good amount of time to give this diet a try. It is sort of strange to know that I posses 2 copies of the HLA-DQ2 gene and that it is lurking in the background. I have to find some peace that even if the biopsies come back normal it may be the best thing for my body to elimate gluten. Any feedback would be greatly appreciated.

If you carry the gene, I've read, heard and been told that there is more than a good chance you have it.

I would do the gluten free diet anyways...what do you have to lose? Well, gluten, but that is a good thing anyways because you'll probably feel better even after just a couple weeks. Some people say they feel better within days.

Good luck :)

Nancym Enthusiast

For me the decision was pretty simple. Make a temporary change in my diet to see if long standing issues went away or continue to suffer and put myself at the mercy of current medical practices constantly which weren't doing me a bit of good, and were quite possibly making things worse.

I had my answer very quickly after going gluten free.

Newbyliz Rookie
For me the decision was pretty simple. Make a temporary change in my diet to see if long standing issues went away or continue to suffer and put myself at the mercy of current medical practices constantly which weren't doing me a bit of good, and were quite possibly making things worse.

I had my answer very quickly after going gluten free.

Thank you for your replies. You're right the diet change is relatively easy as long as you are committed to it and if it helps it will be wonderful. I have to let go of that feeling that I have to have more than just a positive gene test to be validated. I have stocked my pantry with things so that baking this season won't be hard and am really hoping and PRAYING that this helps me regardless of the results I get from the biopsies. I am so glad this site is here for all the support you get.

ravenwoodglass Mentor
Thank you for your replies. You're right the diet change is relatively easy as long as you are committed to it and if it helps it will be wonderful. I have to let go of that feeling that I have to have more than just a positive gene test to be validated. I have stocked my pantry with things so that baking this season won't be hard and am really hoping and PRAYING that this helps me regardless of the results I get from the biopsies. I am so glad this site is here for all the support you get.

Start the diet now. You are done with the celiac testing and your body may give you the answer before you even go back for the results. You have nothing to lose.

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    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
    • Xravith
      I'm very confused... My blood test came out negative, I checked all antibodies. I suppose my Total IgA levels are normal (132 mg/dl), so the test should be reliable. Still, I'm not relieved as I can't tolerate even a single biscuit. I need to talk to my doctor about whether a duodenal biopsy is necessary. But it is really possible to have intestinal damage despite having a seronegative results? I have really strong symptoms, and I don't want to keep skipping university lectures or being bedridden at home.
    • Scott Adams
      They may want to also eliminate other possible causes for your symptoms/issues and are doing additional tests.  Here is info about blood tests for celiac disease--if positive an endoscopy where biopsies of your intestinal villi are taken to confirm is the typical follow up.    
    • Scott Adams
      In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease--and you are above that level. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! May I ask why you've had so many past tTg-IgA tests done, and many of them seem to have been done 3 times during short time intervals?    
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