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Got My Genetic Results
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I got my genetic results from Enterolab (via Laboratory at Bonfils) :

Gene Test for Gluten Sensitivity

Molecular analysis: HLA-DQB1*0602, 0609

I've been trying to translate this, and from what I can figure out, I've got double copies of DQ1 subtype 6. Which means both of my parents carried at least one DQ1 gene, and all of my kids will have at least one DQ1 gene.

Am I right about this? Or does it mean something different?

Nancy

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I've been trying to translate this, and from what I can figure out, I've got double copies of DQ1 subtype 6. Which means both of my parents carried at least one DQ1 gene, and all of my kids will have at least one DQ1 gene.
I would guess that both of your parents may have carried the gene since you have two copies, but I don't think that all of your kids would have it unless you know if the father of the children has the gene. If the father doesn't have the genes than I believe the chances of your kids getting the genes would depend if the genes are dominant or recessive. If they are dominant, then more of your kids would have the genes (I can go into more detail if you are interested).
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Welcome to the wonderful world of DQ1! :)

I have one copy of DQ1 and it's a barrel of monkeys. For more info on the glories of this gene, you may want to check out this forum:

http://brain.hastypastry.net/forums/forumdisplay.php?f=141

Yes, as Carrie said, each of your parents have one DQ1 gene (at least) but it also means your kids will have at least one. You have two DQ1 genes and even if your husband has none, your kids get one from each of you, so that means they will each have one. That doesn't mean they will have problems associated with it (for example, 0602 is associated with narcolepsy, but I haven't noticed anyone on this forum mention being diagnosed with that as well. Though gluten problems probably are more common with it than narcolepsy.

Might be a good idea to get your family used to eating low gluten foods as a lifestyle so they don't experience trouble in the future with it. From what I understand, it doesn't matter if it's recessive or dominant, if you have one, you still have the possibility of problems (as I do...) Double DQ1 means double the trouble.

Take care

Stephanie

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I have DQ1 also. Only one copy though. I also have DQ3. Is DQ1 suppossed to be worse than DQ3...or does it matter? I'm getting the feeling DQ1 is the worst. <_<

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My daughter also has a double copy of DQ-1 subtype 6. Her's are 0602, 0604.

I think that all of your kids will have at least one copy of the DQ-1 gene and depending on what genes their father has, they could have 2. Based on my daughter's results, enterolab told us that they knew for sure that myself and my husband each have at least one copy of DQ-1.

I urge you to get the biopsy done if you are still eating gluten. I wish we would have had one done on my daughter. We were so fed up with drs. that we just put her on the diet before we even did the enterolab tests. I think that had we done a biopsy they would have found damage. However, I guess that doesn't really matter at this point.

Keep us updated as to what you decide to do!

Shannon

I also wanted to add that just because you don't have the typical genes associated with celiac, that doesn't mean you don't have it and that the GI should tell you that you don't need a biopsy. There are a small percentage of people who have celiac with the DQ-1 gene and you may be one of them.

Also Rachel, I have no idea if DQ-1 is worse than DQ-3, but I wonder if anyone else does? I have heard that a double copy of any particular gene is worse than having only one copy. But, from what I remember about you, you had it pretty rough so I don't know how true that is!

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The biggest reason I decided to do the genetics before I did anything else was because I was getting so little support and a lot of eye rolling and accusations of being a hypochondriac by my husband and his family that I was starting to doubt my own symptoms. I really just wanted to make sure I was barking up the right tree, ya know?

Now that I know, I will also have more confidence if I have to put my foot down with a doctor at some point and demand tests or whatever.

When I told my husband about my genetic tests, he started getting teary-eyed as I was explaining it to him. But then he said that genetics is just theory and it doesn't mean I actually have anything wrong with me, and it's just a guess. :blink:<_<

Anyway, I've got a call in to make an appt with a GI, and as soon as I have my appt time figured out for that, I'm going to make an appt for a neurology eval as well.

And once I get whatever diagnoses I get from all that, I'm going to make appts with my doctors just so they can EXPLAIN THIS ALL TO MY HUSBAND and shake some sense into him if need be.

I'm also going to get my kids' genetics done through Enterolab. So I'll know for sure what is going on with them. It actually wouldn't surprise me at all if one of my kids came back as having the main genetic markers for celiac because my husband, his dad and his grandmother all have GI issues.

I'm also going to eventually try and get my husband to do his genetics, but that will probably take a while...

I did do some web searching on the genes, and did come across some mentions of narcolepsy with 0602. But they were more talking about excessive daytime sleepiness (bingo!) which they said was due to poor REM sleep rather than the stereotypical falling asleep at the drop of a hat. My kids also sleep a lot.

0602 is also being researched for a connection with MS, which makes a lot of sense with my neuro symptoms. I also have a cousin with MS.

And 0602 is being researched for a connection with schizophrenia, which my maternal grandmother had.

BUT.... 0602 also helps protect from getting diabetes.

So, there's been a lot of things clicking with this result.

Nancy

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When I told my husband about my genetic tests, he started getting teary-eyed as I was explaining it to him. But then he said that genetics is just theory and it doesn't mean I actually have anything wrong with me, and it's just a guess.
wow... well maybe the doctor can explain genetic testing to your husband when you get your doctor to explain everything to him. I think he will be more understanding once he learns how serious this is.

I'm also going to get my kids' genetics done through Enterolab. So I'll know for sure what is going on with them. It actually wouldn't surprise me at all if one of my kids came back as having the main genetic markers for celiac because my husband, his dad and his grandmother all have GI issues.
That's a great idea. Let us know how it goes.
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The thing is that he's VERY smart. He understands all of it. It's just hard-core denial.

He does the same thing with his parents smoking. He'll sit there and wax poetical that smoking doesn't cause lung cancer because people who never smoked also get lung cancer, so it must mean that his parents don't have any more risk of developing lung cancer than anyone else.

I think he just thinks if he ignores it or declares that it isn't true, then his version of reality will become reality.

I also think that he's a lot more freaked out about my health problems (and illness in general) than he lets on. My dad died of stomach cancer last year, and my mom died of breast cancer 12 years ago. So I think that he doesn't want to believe anything could be wrong with me. My dad went from looking completely healthy to looking like a skeleton in the matter of a month and a half. My husband had never witnessed anyone go through cancer, so I think it has really affected him and scared him.

But for Pete's sake. It could be so, so, SO much worse than me having gluten intolerance. It's just gluten. It's basically the South Beach diet. Get over it. It's not like it's going to impact the way he lives his life. He's acting like I have to go have chemo or dialysis or something.

I don't know, maybe it's me. I've just witnessed a lot worse things in my life than something that can be fixed by a dietary change. So for me, my husband being in denial overdrive because I have to stop eating gluten is freaking ridiculous. Would he be this freaked out if I had diabetes? Or high blood pressure? Those require a dietary change.

I'm the one who is going to have to go through the cravings, the neuro and digestive symptoms waxing and waning, the glutenings, the eye-rolling, the questions, etc.

But I KNOW he's in there somewhere and he does believe me and he does take it seriously because he did get teared up. If it wasn't for that, I'd think he was completely off his rocker.

Well, I think that he'll catch a gear and finally get it once I get all the tests done and can finally go gluten-free. I think that the changes will be pretty obvious.

He'll get it eventually.

Nancy

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ah ok, what you said makes perfect sense. He understands it all, but he just seems scared. That's understandable, he probably doesn't want anything bad to happen to you. Some guys are just so hard at expressing themselves. I know a few ;)

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Hang in there Nantzie- Im sure your husband is just really scared. I lost my mom to stomach cancer in a matter of months too and it was brutal so when I got sick and dropped a ton of weight, my husband freaked out. He was so scared. I'm lucky in that I can usually drag what's wrong out of him. It may just take him some time.

Sometimes I think it's more difficult for the loved ones of someone with a disease as they can't do anything about it. My husband says that's the most frustrating thing about everything that's happened to me (my mom's death, my developing Celiac's and everything associated with it). He want to fix it- that's his idea of doing something about it. A lot of guys want to "fix it" and have a hrad time accepting that they can't.

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Hang in there Nantzie- Im sure your husband is just really scared. I lost my mom to stomach cancer in a matter of months too and it was brutal so when I got sick and dropped a ton of weight, my husband freaked out. He was so scared. I'm lucky in that I can usually drag what's wrong out of him. It may just take him some time.

Sometimes I think it's more difficult for the loved ones of someone with a disease as they can't do anything about it. My husband says that's the most frustrating thing about everything that's happened to me (my mom's death, my developing Celiac's and everything associated with it). He want to fix it- that's his idea of doing something about it. A lot of guys want to "fix it" and have a hrad time accepting that they can't.

You described exactly what my fiance said. He becomes upset when I don't feel good, and he tries so hard to help me in any way that he can, though he knows that nothing (meds, etc) does any good. He knows this will take time and dedication; he's just upset that he has to see someone he loves very much to go through this and not be able to do anything to make it better.

He's such a sweetheart....they are....they just want to help us get better. :)

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Berneses - I'm so sorry about your mom. It's just horrible. I just hope that with finding out about celiac early in our lives, we'll all be healthier.

I am seeing little glimpses of my husband's feelings. I do think that he's more scared than anything. Him blowing everything off just makes me feel like I have to go through this alone and I can't even talk to him about it.

Good thing I'm a tough chick. And thank God for this forum.

Nancy

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Thanks for your sympathy. Yeah- it takes awhile. It's very scary to watch someone you love get sick. Just give him time. And this forum is a Godsend :) Beverly

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    • Hi everyone, I've been reading this forum sporadically and have some questions of my own. I'm in my 40s and was diagnosed with celiac last December by biopsy and blood work after months of tests by my primary and then a gastro. My husband, around the same age as me, was dx'd with stage 4 cancer a month later, so admittedly it's took me longer than I'd have liked to learn about celiac. Now I feel pretty on top of my diet. I mostly make my own food - proteins and veggies, with some certified gluten-free snacks in the mix - and am pretty strict about what I will/won't eat at friend's houses or in restaurants (I prefer to go to dedicated gluten-free kitchens whenever possible). I'm doing okay on the diet, but still getting glutened every so often, usually when I let me guard down outside the home. I also periodically see my primary and a naturopath (who happens to have celiac!), but still, I have many questions if anyone would care to answer:

      -FATIGUE. I'm still so tired, fatigued so much of the time. My doctors blame this on the stress of my husband's diagnosis and my periodic trouble sleeping. But even during weeks where I'm sleeping enough (8-10 hrs a day), eating right, exercising as I can, trying to keep stress at bay, I'm still so bleeping tired. Maybe not when I wake up, but by late afternoon. Often my legs even feel weak/wooden. Has anyone else experienced greater fatigue early on after being diagnosed? This will pass, yes? I know I could cut out the sweets and that could help, but also, being a caregiver is hard and sometimes it's nice to eat your feelings between therapy sessions.  

      -SYMPTOMS CAUSED BY FATIGUE? Sometimes I'll have other "feels like I've been glutened" symptoms if I haven't gotten enough sleep, though I'm trying so hard to sleep at least 8 hours a night these days. Hasn't happened in a while thankfully, but there was a point this summer where my insomnia was bad and my arms were achy and I had some crazy flank/back pain I'd never experienced before. For weeks. Doctor ordered me to sleep sleep sleep, taking Benedryl if needed. I did, and the symptoms went away, but weird, yes? Has this happened to you? I ask because I want to make sure I'm getting all strange pains tested to the full extent if there's a chance it's something other than celiac. I do sometimes still feel that strange side stitch after a CC incident.

      -SKIN PROBLEMS. I have had a smidge of eczema since I was a teen and it - and the dermatitis herpetiformis I've acquired with my dx - are out of control right now. I recognize the connection with stress, but also, has anyone found any great natural remedies for DH to stop the itching? I've tried so many useless ointments and medicated creams, a number of them given to my by a dermo months ago. I see my naturopath this week, but thought I'd ask here too.

      -MOSTLY gluten-free KITCHEN GOOD ENOUGH? My husband is supportive of my diet and mostly eats gluten free meals with me, but we still keep a gluten-y toaster for him and the gluten-y dog food in a corner of the kitchen and he still makes the occasional meal with gluten for himself on his own cookware (ravioli, pizza, mac n cheese, etc). Or sometimes I make eggs/toast and the like for him when he's too sick to move. Otherwise, we're militant about how we cook, which cookware we use, etc. He even has a kitchen nook off our den where he makes sandwiches. But sometimes I wonder if having two separate sponges in our shared-ish main kitchen is enough and I should just banish all gluten whatsoever from the kitchen. I can't be the only one with a mixed kitchen, right? How do you do it if you have a mixed-eating family?

      Thank you so much!  
    • Hang in there!  Count your blessings.  Do something you like to do and relax. I know that is hard to do as a young mother (as I sit here in the kitchen sipping coffee quietly as my teenager is sleeping in after a late football game last night where she marched in 90 degree plus weather in full uniform).   But seriously, take a few minutes to relax!  
    • Meredith, this is very true. A colonoscopy is for diagnosis of the lower intestine, endoscopy for the upper intestine.  How did your doctor interpret the tests? I suggest you read the link Cycling Lady gave you because it contains a lot of good information. 
    • Sorry, but this product (supplement) is not even certified gluten free.   Seems odd that a product geared to Non-Celiac Gluten Intolerance would not take the extra step of getting certified.   I guess I am a Nervous Nellie, especially after the reports that several probiotics were contaminated with gluten.   https://celiac.org/blog/2015/06/probiotics-your-friend-or-foe/
    • Thank you for posting that. I've had a lot of that bloodwork done and everything is normal. At the peak of this belly bug I had blood work done and my white count was fine. I think it's just my health anxiety scaring me into thinking this is something scarier (to me) than celiac. Maybe the anxiety will subside once I go gluten-free. The anxiety is brutal.
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