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

Gene Test Question

1974girl

Recommended Posts

1974girl Enthusiast
1974girl
Posted

Question:

1) Daughter #1 has celiac (biospy and blood confirmed) She is DQ2/DQ8.

Daughter #2 is DQ2/DQ2

Is Double DQ2 at a greater risk? She is missing the antiendomysial antibody that her big sister has but shows slight elevations in Ttg. They just say retest her in 6 months. Can you have celiac without that positive antibody showing? Is double DQ even worse than DQ2/DQ8?

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

Celiac.com Sponsor (A8-M):


mommida Enthusiast
mommida
Posted

Sorry, you really only have to have one Celiac gene to have Celiac.

I think 30% of Celiacs can be IGA deficient. That is why a full test panel will have a total IGA count, to make sure the individual even has IGA.

A carrier of 2 Celiac genes, seems to be more sensitive with a stronger reaction to a smaller amount of gluten.

My daughter has DQ2 and DQ8 genes, Celiac, and Eosinophilic Esophagitus. (Maybe that is where the connection to Celiac and EE is from? DQ2 and DQ8?

Takala Enthusiast
Takala
Posted

Yes, but remember, you can have the genes and not develop the disease, the majority of people do not, so far. But having close relatives with it increases statistical risk. Wonder if this will change in the future, as the rate of celiac and gluten intolerance in the general population is rising.

Bubba's Mom Enthusiast
Bubba's Mom
Posted

Question:

1) Daughter #1 has celiac (biospy and blood confirmed) She is DQ2/DQ8.

Daughter #2 is DQ2/DQ2

Is Double DQ2 at a greater risk? She is missing the antiendomysial antibody that her big sister has but shows slight elevations in Ttg. They just say retest her in 6 months. Can you have celiac without that positive antibody showing? Is double DQ even worse than DQ2/DQ8?

A double DQ2 means she got one DQ2 from each parent. That's all it takes to be genetically inclined to get Celiac.

Skylark Collaborator
Skylark
Posted

Is Double DQ2 at a greater risk? She is missing the antiendomysial antibody that her big sister has but shows slight elevations in Ttg. They just say retest her in 6 months. Can you have celiac without that positive antibody showing? Is double DQ even worse than DQ2/DQ8?

The risk depends whether it's DQ2.2 or DQ2.5. Either way she needs a biopsy. You can be celiac with just positive TTG and it's harder to get positive antibody tests in kids.

pricklypear1971 Community Regular
pricklypear1971
Posted

Let's not forget us halfies!

You want to know the funny thing about knowing the genes??? I'm the one with issues but we found out hubs carries at least half a dq2, also (but different than mine) because it showed up in son's test.

And his half a dq2 put him statistically at higher risk than me with my two half copies (dq2, dq8).

Go figure.

So, it's nice to know if you have the genes but beyond helping you screen the family and convince an md ive found its rather useless info (but it does explain a few things, doesn't it?).

Maybe it will be more useful in the future?

Gemini Experienced
Gemini
Posted

Question:

1) Daughter #1 has celiac (biospy and blood confirmed) She is DQ2/DQ8.

Daughter #2 is DQ2/DQ2

Is Double DQ2 at a greater risk? She is missing the antiendomysial antibody that her big sister has but shows slight elevations in Ttg. They just say retest her in 6 months. Can you have celiac without that positive antibody showing? Is double DQ even worse than DQ2/DQ8?

Yes, having a double gene usually indicates that if you trigger for Celiac, then you will have a more severe case and be extremely sensitive to gluten. I tend to believe the research because I have a double DQ2 and nearly died from this disease. As they say, I got it bad! :o

The fact that your daughter has slight elevation in tTg and isn't showing on the EMA could most likely mean she has triggered but hasn't been reacting long enough to show a positive EMA. It takes some time to show positive on all counts on a Celiac panel. That would be enough for me to out her on a gluten-free diet, especially with a diagnosed sibling. I don't think there is any other disease where people are made to jump through so many hoops for a diagnosis.

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

Celiac.com Sponsor (A8-M):


  • 2 weeks later...
sce2012 Newbie
sce2012
Posted

I am double DQ as well...Gemini, how long did it take you to heal?

sce2012 Newbie
sce2012
Posted

I meant double DQ2! DQ2 homozygous

nora-n Rookie
nora-n
Posted

"slight elevations in Ttg"

What were the numbers? And what was the total IgA?

The EMA is a IgA type test only, by the way

The Ttg is not often positive with patchy celiac, the most common form of celiac nowadays. It may be positive only in about 30-40% of cases of patchy celiac.

For patchy celiac, and early celiac, they have developed the deamidated gliadin test.

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. Rogol72
      - Rogol72 replied to Butch68's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Guinness, can you drink it?

      Hey @Butch68, I also have dermatitis herpetiformis but don't suffer from it anymore. I used to drink Guinness too but I drink Cider now when out on social occasions. I assume you are in Ireland or the UK. If it's any good to you ... 9 White Deer based in Cork brew a range of gluten-free products including a gluten-free Stout. I'm not sure if they...
    2. Scott Adams
      - Scott Adams replied to Butch68's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Guinness, can you drink it?

      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley...
    3. MogwaiStripe
      - MogwaiStripe replied to Midwestern's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      15

      Gluten Issues and Vitamin D

      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease. Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/
    4. Scott Adams
      0

      Tahini Swirl Fudgy Brownies (Gluten-Free)

    5. Butch68
      - Butch68 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Guinness, can you drink it?

      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too. is this everyone’s experience? Can I drink it? I get dermatitis herpetiformis and don’t get instant react...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,220
    • Most Online (within 30 mins)
      7,748
    Dye42
    Newest Member
    Dye42
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Rogol72
      Guinness, can you drink it?

      By Rogol72 · Posted

      Hey @Butch68, I also have dermatitis herpetiformis but don't suffer from it anymore. I used to drink Guinness too but I drink Cider now when out on social occasions. I assume you are in Ireland or the UK. If it's any good to you ... 9 White Deer based in Cork brew a range of gluten-free products including a gluten-free Stout. I'm not sure if they are certified though. https://www.9whitedeer.ie/ I haven't come across any certified gluten-free stouts this side of the pond.
    • Scott Adams
      Guinness, can you drink it?

      By Scott Adams · Posted

      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Gluten Issues and Vitamin D

      By MogwaiStripe · Posted

      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Guinness, can you drink it?

      By Butch68 · Posted

      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By trents · Posted

      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have 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.