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

Gluten Sensitivity Genes?


chrissy

Recommended Posts

chrissy Collaborator

how has it been determined by enterolab that certain genes are gluten sensitivity genes? i have read plenty of articles that talk about non-celiac gluten sensitivity, but not a single article that talks about gluten sensitivity genes. why does no one else have this information? or is it out there and i just haven't found it?


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



Celiac.com Sponsor (A8-M):



CarlaB Enthusiast

Google the specific genes you are wondering about and all kinds of information will come up about them.

I "met" a double DQ1,6 on here yesterday. That's a gluten sensitive gene, the same as I have, and she was a biopsy-proven celiac without a celiac gene. Their still learning so much about this. I think we're still at the point where there is more we don't know than what we do know!

CantEvenEatRice Enthusiast
Google the specific genes you are wondering about and all kinds of information will come up about them.

I "met" a double DQ1,6 on here yesterday. That's a gluten sensitive gene, the same as I have, and she was a biopsy-proven celiac without a celiac gene. Their still learning so much about this. I think we're still at the point where there is more we don't know than what we do know!

That is really interesting Carla! I was curious about gluten sensitivity genes also and whether they can lead to biopsy proven Celiac. I think the gluten sensitivity genes are the same as Celiac genes, they just haven't been labeled that yet by the medical community.

chrissy Collaborator

my family is involved in the celiac study being done through the university of california, irvine. the information we got on the study said that they know that there are more genes involved than the DQ2 & 8----they just don't know what they are yet.

jerseyangel Proficient

This is interesting. I just ordered the Enterolab Gene Test yesterday--I want to see which genes I actually have. I also think that seeing the results will make some of my family members consider being tested.

AndreaB Contributor

From what I understand, the gluten sensitive genes are not the recognized celiac genes but people with active sensitivities still respond favorably to the gluten free diet and they still cause damage in various ways.

Yenni Enthusiast

But even if you have any of the genes (both the non one and the celiac one) do they have to be active? I mean do you have celiac if you have the gene or can it be "sleeping" sort of speak?


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



Celiac.com Sponsor (A8-M):



chrissy Collaborator

you can have the gene and not have the disease. one of my kids has the celiac gene but the disease has not been activated in him. hopefully it never will.

CarlaB Enthusiast
But even if you have any of the genes (both the non one and the celiac one) do they have to be active? I mean do you have celiac if you have the gene or can it be "sleeping" sort of speak?

You can carry the gene and not have an active disease.

Yenni Enthusiast

Thanks! :)

AndreaB Contributor
But even if you have any of the genes (both the non one and the celiac one) do they have to be active? I mean do you have celiac if you have the gene or can it be "sleeping" sort of speak?

Yes. My husband has 2 celiac genes are they are not active (or they are sleeping). :)

He was tested through enterolab just like the rest of us were.

Helena Contributor

From what I've read, the genetic tests are used to rule out celiac. i.e. if someone *doesn't* have those genes, there is a 99% chance (or something like that--it isn't 100% but close) that that person does not have celiac. But there are a lot of people walking around with those genes who do not have celiac and will never have it because there are other genes involved with celiac disease as well. (i.e. the suspicion is that people with celiac have other genetic markers for the disease as well which currently haven't been identified.) By the way, genetic testing is not yet available in Canada--I checked.

CantEvenEatRice Enthusiast

Does everyone have the gluten sensitivity genes? It seems that way through Enterolab. Maybe everyone has them, but not all have active celiac/gluten sensitivity. My son has 2 of the gluten sensitivity genes which means that both my husband and I both have at least 1. I have Celiac, but do not know my gene makeup. My husband does not have Celiac or gluten sensitivity so I am wondering about the gluten sensitivity genes. It makes sense to me, but it seems like everyone who gets tested through Enterolab has at least the gluten sensitivity genes.

happygirl Collaborator

Both my sister and I were tested (gene) through enterolab this summer (2 years after my diagnosis through bloodwork). We both have the same Celiac gene (DQ8) and gluten sensitivity gene. The next step is to test my parents to see if one of them has both the celiac/gluten sensitive or if one has one/one has the other.

I believe one of CarlaB's daughters tested negative, if I remember correctly.

akjenny: about 30-40% of the american population has either DQ2, DQ8, or both. So "just" having the gene is not sufficient to have Celiac. But, among diagnosed Celiacs, I think the number is like 95% or 98% have one or both of these genes. So, researchers are still looking for other links that might explain so much more. On the other hand are gluten sensitive genes, which I do not know nearly as much about.

CarlaB Enthusiast
I believe one of CarlaB's daughters tested negative, if I remember correctly.

Yes, one of my daughters tested negative, but I have two DQ1 genes, so I didn't have her tested genetically because I know she carries at least one gluten sensitive gene.

The other thing about DQ1, there is a biopsy-proven celiac on here who has two DQ1's and no "celiac" genes. They are still learning a lot about this disease.

Archived

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

  • 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. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

    2. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

    3. - nanny marley replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      20

      Insomnia help

    4. - David Blake commented on Scott Adams's article in Product Labeling Regulations
      1

      FDA Moves to Improve Gluten Labeling—What It Means for People With Celiac Disease

    5. - nanny marley replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      nothing has changed

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,343
    • Most Online (within 30 mins)
      7,748

    emoryprose
    Newest Member
    emoryprose
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • asaT
      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions to it, so different for everyone.  
    • asaT
      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know.  I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past, but going to try it at 5k units a day. having a pth test on friday, which is suspect will be high. my homocysteine has come down to around 9 with 3 weeks of these supplements and expect it to go down further. i also started on estrogen/progesterone. I have osteoporosis too, so that is why the hormones.  anyway, i think all celiacs should have homocysteine checked and treated if needed (easy enough with b vit, tmg). homocysteine very bad thing to be high for a whole host of reasons. all the bad ones, heart attack , stroke, alzi, cancer..... one of the most annoying things about celiacs (and there are so many!) is the weight gain. i guess i stayed thin all those years being undiagnosed because i was under absorbing everything including calories. going gluten-free and the weight gain has been terrible, 30#, but i'm sure a lot more went into that (hip replacement - and years of hip pain leading to inactivity when i was previously very active, probably all related to celiacs, menopause) yada yada. i seemed to lose appetite control, like there was low glp, or leptin or whatever all those hormones are that tell you that you are full and to stop eating. my appetite is immense and i'm never full. i guess decades or more ( i think i have had celiacs since at least my teens - was hospitalized for abdominal pain and diarrhea for which spastic colon was eventually diagnosed and had many episodes of diarrhea/abdominal pain through my 20's. but that symptom seemed to go away and i related it to dairy much more so than gluten. Also my growth was stunted, i'm the only shorty in my family. anyway, decades of malabsorption and maldigestion led to constant hunger, at least thats my theory. then when i started absorbing normally, wham!! FAT!!!    
    • nanny marley
      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I don't always sleep well at the best of times , racing mind catches up I have decorated my whole house in one night in my mind before 🤣 diet changes mindset really help , although I have to say it never just disappears, I find once I came to terms with who I am I managed a lot better  , a misconception is for many to change , that means to heal but that's not always the case , understanding and finding your coping mechanisms are vital tools , it's more productive to find that because there is no failure then no pressure to become something else , it's ok to be sad it's ok to not sleep , it's ok to worry , just try to see it has a journey not a task 🤗
    • nanny marley
      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again 
    • trents
      You may also need to supplement with B12 as this vitamin is also involved in iron assimilation and is often deficient in long-term undiagnosed celiac disease.
×
×
  • 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.