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Gene Tests Results For Me And My Children

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I have been gluten free for over a year and am currently doing a gluten challenge for blood tests.  I had gene tests done for myself and both my teenagers and we all show 3 positive gene alleles for gluten sensitivity.  My children do not have any symptoms at this time.


I plan on going back on a gluten free diet after the blood tests no matter what, but my children are resisting.  I am looking for some good information to pass along to them to use as they get older and are no longer under my dietary control as to what they can expect as far as gluten sensitivity, odds of celiac, etc.   Can someone give me insight as to what these tests mean?


Thank you.


Our results are:




DQA1:  0501 (HLA-DQ2)  Positive

DQB1:  0201 (HLA-DQ2)  Positive

DQB1:  0602 (HLA-DQ1)  Positive


Both kids:


DQA1:  0301 (HLA-DQ8)  Positive

DQB1:  0302 (HLA-DQ8)  Positive

DQB1:  0602  (HLA-DQ1)  Positive


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I personally do not know much about genetic testing.  As I understand it, a positive gene test only means that you have some of the genes often seen in celiacs but it is no garuntee that you will develop celiac disease, or if you or your children will. As you know, to find out if you have celiac disease you need to have the blood tests and/or the endoscopy done. they are occassionally a false negative but it isn't all that common, especially if you eat gluten for the month or two prior to testing, and you have many tests run. (It is VERY rare to have all tests show up positive so a variety of tests -both IgA and IgG - is often best).


Good luck! And good luck with the kids... I'm almost dreading when mine are old enough to start deciding things for themslevs...


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Hi, there are good charts at wikipedia!



Basics: people have two beta chains and two alpha chains. 


Even having half a DQ2,5 gene, 05* increases the risk for celiac just as an example. You have DQ2,5 and DQ6 (which was called DQ1 before, because DQ5 and DQ6 have 01* in the alpha chain and they could not discriminate between them)


Children: Here we have DQ8 and DQ6. They inherited your DQ6 and father´s DQ8.

(strange with DQ1, usually labs are not looking for it, so either they looked for it for some other reason (looking for diabetes genes or whatever) or they just reported it.)


DQ8 is the other official celiac gene, the most common one is DQ2,5 , the one you have one copy of.


DQ8 and risk for celiac: the risk for developing celiac is a bit less than with DQ2. They still should be tested every two or three years with the ordinary blood tests for celiac.


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    • I understand. Poor thing, made doubly rough because 13 is a really hard age even in the best of times. OK, at 13 she should show the damage in the biopsies. I didn't know if she was 2 or 3 yrs. old & in those cases sometimes they just plain haven't lived long enough to be damaged where the biopsies pick it up - it can be so patchy then.  Gosh, I'm really feeling for her & you both and I so want to say take her off gluten the moment the endoscopy is over but I'm afraid to say that b/c I've seen some pretty weird things go on that you would never expect. Docs can be so uninformed! Please let us know how things turn out & send your daughter some hugs from me and tell her I believe her. Please let her know that most of us had been told by doctors they think it's all in our heads, didn't believe us, blew us off so we know exactly how she feels. Remind her her pedi believes her & he's been more helpful than the GI has.  Press the GI for 6-8 biopsies but a bare minimum of 6.  {{{{{{{{{{{{{{{{{{{{{{HUGS}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}
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    • Ahh good point! She is 13 and has been miserable for over two years. It started with chronic hives. We have been to a dermatologist, and a allergist and they brushed it off to her seasonal allergies and now she has joint pain,bloating,constipation,fatigue,headaches just all around miserable. I just want answers quick. she is getting depressed and says she hates her life cause she doesn't think anyone believes her. It's heart breaking . I hope we get answer soon. Thanks for the advice I will keep her on gluten. She is just miserable and I figured the sooner she is off gluten the sooner she will feel better. 
    • Welllllllll, in this particular case it would be best to keep her on gluten until the results come back. The reason I say this is b/c this GI seems whacky. There's a chance you may need to go to a different GI & have the endoscopy redone. I was going to say get a new GI but since the endoscopy is on Monday then I would go forth with it rather than waiting the time it would take to get a new GI & schedule an endoscopy. This GI seems set that it's not celiac & when they get that in their brain it's usually pretty darn hard for them to admit they were wrong. My concern is that she won't take enough biopsies from the right places b/c she's either dumb about how many & where or letting her personal (already formed) opinion influence what she will do. The problem is that you can't be there in the OR with them standing on the GI's shoulders making her do the right thing. Not knowing your daughters age, the other concern is that there may not be "enough" damage just yet, it may be patchy, etc..... that with the mindset this doc has, she will poo poo the dx.  Let me say that it would be a travesty & wholly awful IF you had to put your daughter through another endoscopy but we know how very important it is for her to have an official, dyed in the wool dx. So I'm just trying to think down the line & prevent problems before they come up. I mean, this doc may not even take any biopsies. That sounds insane I realize, but really, it happens more often than you would think. I can't tell you the number of times we've had people come on here after having an endoscopy for celiac where the doc didn't take any biopsies b/c the doc is so stupid as to think they can see the damage & doesn't realize there MUST be biopsies! If you take her off gluten & heaven forbid, you have to end up putting her back on it to get further testing then chances are she's going to get much, much sicker when she's put back on gluten. That most often happens with us and I'm talking about radically sick. See, I'm basing all my thinking on the fact that despite ALL the positive celiac blood work, this dimwit doc doesn't think it's celiac & instead it's all related to the constipation. That is just so far out there, it's NUTS! She's flying in the face of hard evidence! Every test you listed was positive. I can't even begin to understand how this GI comes to her insane conclusion. THAT'S why I am so concerned. 
    • Thanks for your reply. That's what my husband and I thought too. She has a ton of symptoms that's fit celiac. Also I was going to start her gluten free diet after her biopsy on Monday cause the dr said the results take two weeks. Is there a reason I should keep her eating gluten until we get the results? Thanks for your help.
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