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Just Got Genetic Test Results....help!?!

pain*in*my*gut

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pain*in*my*gut Apprentice
pain*in*my*gut
Posted

So, the nurse just called and told me that my HLA DQ 2 was positive, but my HLA DQ8 was negative. From what little I have been able to research, you don't have to have both of them positive to still be a candidate for Celiac Disease, but you have to have at least one, right? I know that having the genes does not mean that I have Celiac, it just means that it's possible for me to have it.

Anybody have the DQ2 and not the DQ8 and still have positive biopsy results? Is there any correlation between the severity of the disease if you have both genes instead of just one?

Good grief, we need to have medical degrees to figure all this crap out! Why can't it be simple, like when you have strep throat? Or a pregnancy test....YES OR NO?? Sorry for the vent....I just want answers already! :angry:

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shadowicewolf Proficient
shadowicewolf
Posted

I have both and negative results for the biopsy :<

Anyway, i'd say you have it based off of what you do have.

mushroom Proficient
mushroom
Posted

Good Grief, indeed!. I just went back to your prior topic, and with a DGP that high, and the DGP being the most specific test I know of for celiac, it surely doesn't matter about what the other tests said or what the biopsy says (and he may not do it properly either, or it could be a false negative), I'm with shadowicewolf, I would consider myself diagnosed.

pain*in*my*gut Apprentice
pain*in*my*gut
Posted
  • Author

:rolleyes:

Good Grief, indeed!. I just went back to your prior topic, and with a DGP that high, and the DGP being the most specific test I know of for celiac, it surely doesn't matter about what the other tests said or what the biopsy says (and he may not do it properly either, or it could be a false negative), I'm with shadowicewolf, I would consider myself diagnosed.

Yeah, I figure I have it, too. Gosh, I have such mixed emotions about this. On one hand I am SO RELIEVED to finally know what is wrong with me, but on the other hand IT SUCKS! I love cereals, breads, cupcakes, cookies, pasta....basically all things gluten. I have been trying all of the gluten-free stuff, and it's really not bad, it just going to be a huge adjustment.

Then there is my 6 year old son to worry about. He has a MAJOR fear of needles, and I know just getting his blood tests will be torture for him. He is a gluten lover like his momma, so if he has it, he will be in for a major life change as well. I just wish this disease wasn't genetic so I didn't have to worry about him at all. :(

Thanks for the replies! I am so glad I found this place! I am pretty sure I will be around here for a while....I guess I had better find a comfy seat... :rolleyes:

ravenwoodglass Mentor
ravenwoodglass
Posted

:rolleyes:

Yeah, I figure I have it, too. Gosh, I have such mixed emotions about this. On one hand I am SO RELIEVED to finally know what is wrong with me, but on the other hand IT SUCKS! I love cereals, breads, cupcakes, cookies, pasta....basically all things gluten. I have been trying all of the gluten-free stuff, and it's really not bad, it just going to be a huge adjustment.

Then there is my 6 year old son to worry about. He has a MAJOR fear of needles, and I know just getting his blood tests will be torture for him. He is a gluten lover like his momma, so if he has it, he will be in for a major life change as well. I just wish this disease wasn't genetic so I didn't have to worry about him at all. :(

Thanks for the replies! I am so glad I found this place! I am pretty sure I will be around here for a while....I guess I had better find a comfy seat... :rolleyes:

Yea I agree with the others that you are one of us. Whether you are going to choose to biopsy is up to you.

If your little one has symptoms then do get him tested. You do have the option of making him gluten free, at least at home, without testing. Schools however sometimes want to see an official diagnosis to take the precautions they need to take. If your son has no symptoms, no growth decrease, no tummy troubles, no behavior or learning issues etc you can always wait to have him tested. You could also do stool testing on him through Enterolab but they do not officially diagnose celiac. They can tell you if he has gluten antibodies in his stool though and some have found them helpful.

As for missing gluteny foods there are many gluten free options that are really quite good. Check out the recipe section and if you have favorite stuff ask in the products section for suggestions. When you are ready to start the diet do go with as much whole unprocessed food as you can as it will help you heal faster by lessening your chance of cross contamination.

Oh and you can be a diagnosed celiac without either of those 2 genes as I know all too well.

beebs Enthusiast
beebs
Posted

:rolleyes:

Yeah, I figure I have it, too. Gosh, I have such mixed emotions about this. On one hand I am SO RELIEVED to finally know what is wrong with me, but on the other hand IT SUCKS! I love cereals, breads, cupcakes, cookies, pasta....basically all things gluten. I have been trying all of the gluten-free stuff, and it's really not bad, it just going to be a huge adjustment.

Then there is my 6 year old son to worry about. He has a MAJOR fear of needles, and I know just getting his blood tests will be torture for him. He is a gluten lover like his momma, so if he has it, he will be in for a major life change as well. I just wish this disease wasn't genetic so I didn't have to worry about him at all. :(

Thanks for the replies! I am so glad I found this place! I am pretty sure I will be around here for a while....I guess I had better find a comfy seat... :rolleyes:

I'm a total gluten lover as well. It gets easier I promise..also gluten-free food is getting better and better.

Re your son and needles - my kids have had heaps of blood tests at this stage, we have a numbing patch over here in Oz called EMLA, not sure if you can get it in the US but I assume you can - probably under a different name. Anyhow you just put it on the site where the blood will be taken for an hour and then they won't feel a thing. Just get the Dr/nurse show you where the will take the blood from.

I haven't had a biopsy either and I also only have one gene, my GP is100% that I'm coeliac based on my symptoms and the genes (no official diag of course)and the fact they have completely resolved on a gluten-free diet.

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      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
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      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
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