Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Got My Genetic Results

Nantzie

Recommended Posts

Nantzie Collaborator
Nantzie
Posted

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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Carriefaith Enthusiast
Carriefaith
Posted
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).
skbird Contributor
skbird
Posted

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:

Open Original Shared Link

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

Rachel--24 Collaborator
Rachel--24
Posted

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. <_<

e&j0304 Enthusiast
e&j0304
Posted

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!

Nantzie Collaborator
Nantzie
Posted
  • Author

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

Carriefaith Enthusiast
Carriefaith
Posted
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.
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Nantzie Collaborator
Nantzie
Posted
  • Author

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

Carriefaith Enthusiast
Carriefaith
Posted

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 ;)

Guest BERNESES
Guest BERNESES
Posted

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.

mightymorg Rookie
mightymorg
Posted
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. :)

Nantzie Collaborator
Nantzie
Posted
  • Author

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

Guest BERNESES
Guest BERNESES
Posted

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

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Flash1970
      - Flash1970 commented on Scott Adams's article in Additional Concerns
      1

      Inmate with Celiac Disease Wins $630,000 After Jail Denies Gluten-Free Food

      He should have gotten millions. How much is your life worth?
    2. knitty kitty
      - knitty kitty replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      15

      Insomnia help

      @cristiana, I react the same way. Dairy consumption flushes out my digestive system within an hour, too! As casein is digested, it forms casomorphins that bind to opioid receptors in our bodies. This is similar to digested gluten peptides being able to attach to opioid receptors in our bodies. We have opioid receptors throughout our...
    3. knitty kitty
      0

      About Celiac Remission

    4. TheDHhurts
      - TheDHhurts posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      need help understanding testing result for Naked Nutrition Creatine please

      Hi, I bought Naked Nutrition Creatine. It lists itself as gluten free but is not certified. (It used to be, but they dropped it in the past year or two apparently.) I wrote the company and asked them what testing results they had for creatine and they sent me the attached, which says the test result for gluten is <0.025MCG. I'm used to seeing...
    5. cristiana
      - cristiana replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      15

      Insomnia help

      When I was still recovering my gastroenterologist suggested I bought lactofree product as I was very bloated. So I bought some from the supermarket and from memory, I drank a nice big glass of milk - and it went right through me literally within an hour or so, if my memory serves correctly. I came off dairy completely next and it worked like a charm...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,107
    • Most Online (within 30 mins)
      7,748
    Maggie1349
    Newest Member
    Maggie1349
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Insomnia help

      By knitty kitty · Posted

      @cristiana,  I react the same way.  Dairy consumption flushes out my digestive system within an hour, too! As casein is digested, it forms casomorphins that bind to opioid receptors in our bodies.  This is similar to digested gluten peptides being able to attach to opioid receptors in our bodies.   We have opioid receptors throughout our bodies including lots in the digestive tract. Casein raises tTg IgA antibodies just like gluten consumption does, which leads to further intestinal damage and continuing inflammation.  No wonder our bodies react to it by pushing the "emergency evacuation" ejection seat button! The mother of my childhood friend was British and introduced me to drinking tea properly with milk or cream.  I miss it so much.  And chocolate ice cream.  Not worth the after effects, though.  I've found taking Omega Three supplements (flaxseed oil, sunflower seed oil, evening primrose oil) helps shake those dairy cravings.   Green leafy veggies like broccoli, kale, and greens (mustard, turnip, collards) are great sources of calcium.  Avoid spinach as it is high in oxalates that block calcium absorption and may cause kidney stones.  Yes, more leafy greens are needed to reach the same amount of calcium in a glass of milk, but the greens have other benefits, like increased dietary fiber and polyphenols that act as antioxidants, reduce inflammation, and promote health.   Exposure to gluten (and casein in those sensitive to it) can cause an increased immune response and inflammation for months afterwards.  The immune cells that make tTg IgA antibodies which are triggered today are going to live for about two years. During that time, inflammation is heightened.  Those immune cells only replicate when triggered.  If those immune cells don't get triggered again for about two years, they die without leaving any descendents programmed to trigger on gluten and casein.  The immune system forgets gluten and casein need to be attacked.  The Celiac genes turn off.  This is remission.   Some people in remission report being able to consume gluten again without consequence.  Another triggering event can turn the Celiac genes on again.   Celiac genes are turned on by a triggering event (physical or emotional stress).  There's some evidence that thiamine insufficiency contributes to the turning on of autoimmune genes.  There is an increased biological need for thiamine when we are physically or emotionally stressed.  Thiamine cannot be stored for more than twenty-one days and may be depleted in as little as three during physical and emotional stresses. Mitochondria without sufficient thiamine become damaged and don't function properly.  This gets relayed to the genes and autoimmune disease genes turn on.  Thiamine and other B vitamins, minerals, and other nutrients are needed to replace the dysfunctional mitochondria and repair the damage to the body.  
    • TheDHhurts
      need help understanding testing result for Naked Nutrition Creatine please

      By TheDHhurts · Posted

      Hi, I bought Naked Nutrition Creatine. It lists itself as gluten free but is not certified. (It used to be, but they dropped it in the past year or two apparently.) I wrote the company and asked them what testing results they had for creatine and they sent me the attached, which says the test result for gluten is <0.025MCG. I'm used to seeing test results as ppm, so I'm not sure what <0.025MCG means. Can it be converted to ppm easily? I want to confirm that it is safe to use.
    • cristiana
      Insomnia help

      By cristiana · Posted

      When I was still recovering my gastroenterologist suggested I bought lactofree product as I was very bloated.  So I bought some from the supermarket and from memory, I drank a nice big glass of milk - and it went right through me literally within an hour or so, if my memory serves correctly.  I came off dairy completely next and it worked like a charm, but started to reintroduce quite gradually it as I missed it! To this day, if I overdo dairy products, they work like a mild laxative.  I've never wanted to give up milk completely as I like it so much, and my mum had osteoporosis and it's an easy way of getting calcium.  But it doesn't really 'sit' well with me.   You may need to experiment a bit as when I was healing certain dairy products were worse than others - I could cope with one brand of Greek yoghurt, but I got extremely and painfully bloated with another brand of live British yoghurt.  
    • wellthatsfun
      nothing has changed

      By wellthatsfun · Posted

      i have been strictly gluten free for 7 months. this includes avoiding anything that may contain gluten and making sure surfaces and appliances are clean. i am 18 years old in australia and my tTG-IgA results were 69U/mL, pretty low compared to most people's, for reference. i feel the exact same as before. sure, i was pretty much asymptomatic/silent. the worst i'd get was occasionally bad stools and pitting of the nails/brittle hair since early childhood - and i was diagnosed with low iron and vitamin d which checks out due to easy bruising and such. but those symptoms have remained. maybe i'm jumping the gun, sure. i know it can take years to fully heal. but being over half a year in, i feel that i should be, y'know, healing. i'm nearly at my wits end and wondering if i should have a piece of bread or something to see how i go - to see if i possibly have refractory? my mental health is declining as i feel myself wanting to bang my head against a damn wall out of frustration every day. cravings haven't gotten better. look, i love the stuff i still can have, like salads and such. OH! i haven't lost any weight, which is mind boggling considering i eat very healthily now! i've always been on the chubbier side which is atypical of coeliac. i just don't know what's going on with me. i try to remain hopeful but i'm just so sad all the time. thanks for reading  
    • trents
      Severe severe mouth pain

      By trents · Posted

      @Charlie1946There is a PM (Personal Message) tool built into the forum website that allows you to send a private message to other forum users. Just hover over their name with your mouse cursor and the menu containing that tool will pop up. This is useful if you want to communicate with an individual without everyone else involved in the thread seeing it.  Are you realizing that in my PPI taper down recommendations in an earlier post above, I was responding not to your posts but to @Caligirl57? If you must use a PPI, I certainly would advise taking the lowest dose that is effective for you.  
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.