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Genetics And Celiac Symptoms
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Hii Everyone, does anyone here have double copies of DQ2 ? And if so would you say your extra sensitive go gluten like some studies suggest ?

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I am double DQ2.  Yes, I consider myself super sensitive to gluten.  That is about all I know about it.

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Do doctors usually test for this DQ2 gene or do you have to request it?  I am really sensitive to gluten.  If I eat a cookie I feel like I have the flu within 45 minutes.  If I have my girls tested for the DQ2 gene will that mean they will eventually have Celiac Disease too?

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Do doctors usually test for this DQ2 gene or do you have to request it?  I am really sensitive to gluten.  If I eat a cookie I feel like I have the flu within 45 minutes.  If I have my girls tested for the DQ2 gene will that mean they will eventually have Celiac Disease too?

Yiu can request a gene test for HLA-DQ genes associated with celiac. If you have the gene there is a 50/50 chance that you kids have it too since they take one copy from each parent and each parent has two copies of HLA-DQ genes. If your kids test positive on the gene it doesnt mea they have celiac or thay they would definitely get celiac it just means that they are at a greater risk to get it than someone who doesnt have these genes especially if hey have double copies of celiac genes like my mom and aunt.

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I am double DQ2.  Yes, I consider myself super sensitive to gluten.  That is about all I know about it.

Which DQ2 genes do you have double DQ2.5 or DQ2.5 and DQ2.2 ?

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Yiu can request a gene test for HLA-DQ genes associated with celiac. If you have the gene there is a 50/50 chance that you kids have it too since they take one copy from each parent and each parent has two copies of HLA-DQ genes. If your kids test positive on the gene it doesnt mea they have celiac or thay they would definitely get celiac it just means that they are at a greater risk to get it than someone who doesnt have these genes especially if hey have double copies of celiac genes like my mom and aunt.

Thanks PersianCeliac, does your mom and aunt have celiac?  

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Thanks PersianCeliac, does your mom and aunt have celiac?  

Yes both were diagnosed around 9 months ago. My aunt who is 47 years old is very very thin and never gains weight and had a problem with chronic diarrhea for 16 years ! And lots of gas build up and GI symptoms until this doc sent her for celiac panel. Her numbers were off the chart ! And her biopsy showed total atrophy. I read about the disease and found it its genetic so decided to test my mom. My mom had no symptoms but her blood work came back waaaay off the chart ! It was a shock. Her bippsy showed subtotal atrophy.

When were you diagnosed ?

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Molecular Analysis of DQA1 Genotype Gluten Sensitivity Positive 04-18-12 0501 (HLA-DQ2) Yes 04-18-12 0301 (HLA-DQ8) Yes
Test Date Molecular Analysis of DQB1 Genotype Gluten Sensitivity Positive
04-18-12 0201
(HLA-DQ2) Yes 04-18-12 0302
(HLA-DQ8) Yes

Which DQ2 genes do you have double DQ2.5 or DQ2.5 and DQ2.2 ?

That is the best I can do.  That is all of my genetic results.  USA may not get so detailed results.

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Molecular Analysis of DQA1 Genotype Gluten Sensitivity Positive 04-18-12 0501 (HLA-DQ2) Yes 04-18-12 0301 (HLA-DQ8) Yes

Test Date Molecular Analysis of DQB1 Genotype Gluten Sensitivity Positive

04-18-12 0201

(HLA-DQ2) Yes 04-18-12 0302

(HLA-DQ8) Yes

That is the best I can do.  That is all of my genetic results.  USA may not get so detailed results.

You dont have double copies of DQ2 you have DQ2 and DQ8 which also means you could be very sensitive since you have both celiac genes.

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Yes both were diagnosed around 9 months ago. My aunt who is 47 years old is very very thin and never gains weight and had a problem with chronic diarrhea for 16 years ! And lots of gas build up and GI symptoms until this doc sent her for celiac panel. Her numbers were off the chart ! And her biopsy showed total atrophy. I read about the disease and found it its genetic so decided to test my mom. My mom had no symptoms but her blood work came back waaaay off the chart ! It was a shock. Her bippsy showed subtotal atrophy.

When were you diagnosed ?

Thanks.  I was diagnosed about 3 1/2 years ago.  

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You dont have double copies of DQ2 you have DQ2 and DQ8 which also means you could be very sensitive since you have both celiac genes.

This is interesting.  I wonder if this is why I get so sick.  I don't eat anything containing gluten but when I did before I would get very sick. 4 months after being diagnosed I decided to eat a donut and became very ill.   In a way it's good how sick I get because it keeps me from cheating.

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    • I found when I went gluten free I started eating more dairy and that gave me worse stomach aches and bloating than the gluten did. So now I have to avoid gluten and dairy.  Maybe you have a similar problem with something you are eating.  I hope you feel better soon.  
    • Hi! I received my "official" celiac diagnosis last week. I had an endoscopy last month that was originally looking for ulcers and h. pylori, but they did some biopsies of my duodenum since they were in the neighborhood and the biopsy came back "consistent with Celiac's disease" and later. They urged me to get my blood checked and follow up with my primary doctor. My blood work came back negative, but my doctor was confident it's Celiac so told me to stay away from gluten. I've been completely gluten free (or to the best of my knowledge) for 2 weeks now, and my results are mixed. At first, I felt great! My stomach was no longer CRAZY bloated once I stopped eating pasta and bread, my acne started healing, and the red rash on the back of my arms started to fade. That was the first few days. Lately, though, my acne is once again flaring up and I've been SO EXHAUSTED. I feel so tired all the time. Even now I have fatigue in my head, limbs, and I could hardly walk or move my body earlier today. I'm overweight and I like to go to the gym, but what used to be an easy workout for me is kicking my ass! I used to go to the gym and tear it up: HIIT on the treadmill followed by 40 minutes of heavy weight lifting. Now I can hardly finish 3 reps in my first set without feeling like a nap. I can't run anymore because my body feels clumsy and heavy. Also, I'm still bloated. I don't suffer from painful, acute bloating, but I struggle to pass gas and I look like I have pregnant belly. I think I'm also retaining water all over my body, and I'm not sure if that's normal? For whatever reason, I have this belief that water is mainly retained in the core and not arms, legs, and face. Anyway, I'd love to hear what you have to say/what you've experienced. Is this typical to first going gluten free?
    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
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