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

Newbyliz

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Newbyliz Rookie
Newbyliz
Posted

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
Swimmr
Posted
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
Nancym
Posted

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
Newbyliz
Posted
  • Author
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
ravenwoodglass
Posted
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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      I’m sorry you’re going through all of this. It sounds very stressful, especially when you feel that your symptoms are not being taken seriously. Until you are seen next week, it may help to keep the focus very practical: take clear photos of the skin sores, write down a timeline of symptoms, list all medicines, eye drops, supplements, implants/leak history, and any test results, and bring that to the dermatologist. If there is drainage, spreading redness, fever, worsening pain, eye involvement, or signs of infection, that needs prompt medical care. I would be cautious about assuming parasites or staph without testing, and also cautious with new supplements or putting vitamin C directly on sores, since irritated skin can get worse. A dermatologist can culture lesions, biopsy if needed, and refer to infectious disease if the findings point that way. On the celiac side, I understand your concern for your son, but being HLA-DQ2 positive does not by itself mean he has celiac disease; it means he has a genetic risk. If he is eating gluten now, this is actually the best time for proper celiac blood testing before he tries a gluten-free diet. His symptoms, weight, congestion, and family history are worth discussing with a gastroenterologist, but he should not be told he has celiac based only on HLA status. For your own care, try to keep pushing for objective testing and clear documentation in your records, because that is often what gets doctors to take the next step.
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