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Please Help With Results ?


magicchance

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magicchance Newbie

I got my Genetic Testing Done and my DR. says well I'm not a Genetestis so I couldn't understand the results so she went on line to try to interpret them herself. My HLA-DQ2 was positive and my HLA-DQ8 was negative the paper says LOCUS DQB1 Alleles 02,0603. Can someone please tell me what this means. The DR. Said she could not tell one way or another and said well there's nothing wrong with you. I contacted the place that did the testing they said the DR. would have to call and they suggested I call the hospital for more help which I did but they couldn't tell me much either. Since the Dr. pretty much brushed me off I'm not getting anywhere with her. So Please if anyone could help me understand this I would greatly appreciate it!!!


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Mother of Jibril Enthusiast

I'm a bit confused myself...

DQ2 is one of the main genes for celiac, although to know your risk you'd have to know the alpha portion of that gene. There's a big difference between DQ2.5 and DQ2.2. It is possible, with that gene alone, that you could have celiac disease. Have you done any other tests?

If "0603" is your other gene (DQ6), that's actually a good thing. According to Wikipedia, DQ6.3 gives you protection from a lot of autoimmune disorders and some protection against HIV.

Did the doctor give you the actual report? Or is that just the note he/she wrote down for you?

magicchance Newbie

She gave me the report. I have had Blood test done which came back negative but I was already on the diet. I also have had both scopes done but GI DR. still won't give up the results of biopsy. I've been to so many Dr.'s they have asked for biopsy results from him he will not send them.. So I'm going to have to go in and demand them. I'm just so frustrated and tired of getting the run around and the typical there's nothing wrong with you and it's all in your head diagnosis. The testing was performed at H & I Laboratory in Salt Lake City UT.

lizard00 Enthusiast
She gave me the report. I have had Blood test done which came back negative but I was already on the diet. I also have had both scopes done but GI DR. still won't give up the results of biopsy. I've been to so many Dr.'s they have asked for biopsy results from him he will not send them.. So I'm going to have to go in and demand them. I'm just so frustrated and tired of getting the run around and the typical there's nothing wrong with you and it's all in your head diagnosis. The testing was performed at H & I Laboratory in Salt Lake City UT.

Yeah, your GI needs to cough those up. Legally, he cannot keep them from you. Doctor to doctor is another thing, but you have a right to see your medical records. Go get 'em! :P

nora-n Rookie

The doctor does not mean what DQ2 and DQ6 means?

Well, I have seen patients reporting that some gastros seem to think celiac is to be excluded unless both alleles are positive for the main two celiac genes....that is not true.

You just need one of them to have a greater risk for being celiac.

even without a celiac gene, there is still a risk of being celiac, since the DQ genes only can explain half the risk. The greatest risk is having a celiac relative.

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    • par18
      Thanks for the reply. 
    • Scott Adams
      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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