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

Need Help With Genetic Test Results

wahmmy

Recommended Posts

wahmmy Apprentice
wahmmy
Posted

We did the genetic tests on our two daughters, ages 5 and 2, with Enterolab. We just got the results back and they were the same for both daughters. I'm having trouble interpreting them despite all the info provided from the website link provided. Could you help me? Thanks!

Also, I take this to mean that I have at least one gluten sensitivity gene? My husband is the one with Celiac, diagnosed through blood work and a biopsy a couple of months ago. His father also has Celiac.

Should we test them further at this point? What about myself?

And the severity issue of immunological response -- does that mean that lymphoma and some of those other issues are still a risk even if it's not Celiac? (Because I'm taking it that they won't get Celiac with these results?) What about nutritional deficiencies? Are these not a risk if Celiac damage isn't being done? Is it just they may have bad symptoms but not the actual intermal damage? Sorry for all the questions!

Gluten Sensitivity Gene Test

HLA-DQB1 Molecular analysis, Allele 1 0301

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 7,9)

Interpretation Of HLA-DQ Testing: Although you do not possess the main HLA-DQB1 genes predisposing to celiac sprue (HLA-DQB1*0201 or HLA-DQB1*0302), HLA gene analysis reveals that you have two copies of a gene that predisposes to gluten sensitivity (any DQ1, DQ2 not by HLA-DQB1*0201, or DQ3 not by HLA-DQB1*0302). Having two copies of a gluten sensitive gene means that each of your parents and all of your children (if you have them) will possess at least one copy of the gene. Two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity may be more severe.

For more information about result interpretation, please see Open Original Shared Link

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

Celiac.com Sponsor (A8-M):


nora-n Rookie
nora-n
Posted

There are some celiacs here with either of these genes. I think someone even asked about this comination recently.

ShayFL Enthusiast
ShayFL
Posted

Nora is right. There are dx'd Celiacs with this genetic makeup. What are your husbands genes? Since he is dx'd Celiac, if he doesnt have the 2 U.S. recognized Celiac genes, then it is a whole new ballgame for your children.

wahmmy Apprentice
wahmmy
Posted
  • Author
Nora is right. There are dx'd Celiacs with this genetic makeup. What are your husbands genes? Since he is dx'd Celiac, if he doesnt have the 2 U.S. recognized Celiac genes, then it is a whole new ballgame for your children.

His dr. didn't do a genetic test on him. They dx through I guess other blood work and also the biopsy. His numbers were really high in the blood work, but I know they didn't do a genetic test on him. He's going to see about getting it done now so insurance can pay for it and we won't have to do enterolab with him. Since the girls are so young, we felt the genetic test would be best to start with them and if they didn't have anything, it wouldn't be an issue. Enterolab said that was the way to go as well. Now I wish we would have gone ahead and done a full panel on them b/c now it seems we need to.

I'd just like to know about them for sure before we ban it completely for them outside the house. It's going to be a big deal to my oldest regarding school snacks, parties, etc. and I don't want to force her to take special food to those things if it's not an issue for her yet. Otherwise, we are moving toward a gluten-free home and he is completely gluten-free. All meals we eat with him are gluten-free.

nora-n Rookie
nora-n
Posted

If they are on a low gluten diet, the tests probably will be inconclusive. You really have to eat a lo of gluten for a long time for the tests to be very positive for ordinary celiac.

We keep reading about people getting ill after going "healthy" and starting to bake whole wheat bread and eating whole wheat stuff. Also, the Italians have the highest incidence of celiac , they eat a lot of pasta...

The genes only explain half of celiac.

The highest risk is having a family member with celiac disease.....

nora

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. trents
      - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      how much gluten do I need to eat before blood tests?

      The rate of damage to the villous lining of the SB and the corresponding loss of nutrient absorbing efficiency varies tremendously from celiac to celiac. Yes, probably is dose dependent if, by dose dependent you mean the amount of exposure to gluten. But damage rates and level of sensitivity also seem to depend on the genetic profile. Those with both genes...
    2. MauraBue
      - MauraBue posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Have Tru Joy Sweets Choco Chews been discontinued??

      Help! My 5 year old daughter just stopped eating dairy and gluten due to her EoE and Celiac. Her favorite candy in the world is tootsie rolls. I did some research, and it sounds like these are the only options for finding something similar, but I can't find them anywhere to actually purchase. Have they been discontinued?? Does anyone have another recommendation...
    3. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      how much gluten do I need to eat before blood tests?

      I wonder how long it usually takes and if it is dose dependent as well... or if some ppl have a more pronounced reaction to gluten than others thanks again for all the great info
    4. suek54
      - suek54 replied to suek54's topic in Dermatitis Herpetiformis
      7

      Awaiting dermatitis herpetiformis confirmation following biopsy

      Wow KK, thank you so much for all your attached info. I had a very quick scan but will read more in depth later. The one concerning corticosteroid use is very interesting. That would relate to secondary adrenal insufficiency I think , ie AI caused by steroids such as taken long term for eg asthma. I have primary autoimmune AI, my adrenals are atrophied...
    5. knitty kitty
      - knitty kitty replied to suek54's topic in Dermatitis Herpetiformis
      7

      Awaiting dermatitis herpetiformis confirmation following biopsy

      Welcome to the forum, @suek54, I have Dermatitis Herpetiformis, too. I found taking Niacin B3 very helpful in clearing my skin from blisters as well as improving the itchies-without-rash (peripheral neuropathy). Niacin has been used since the 1950's to improve dermatitis herpetiformis. I try to balance my iodine intake (which will cause flairs...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,260
    • Most Online (within 30 mins)
      7,748
    MauraBue
    Newest Member
    MauraBue
    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

    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      The rate of damage to the villous lining of the SB and the corresponding loss of nutrient absorbing efficiency varies tremendously from celiac to celiac. Yes, probably is dose dependent if, by dose dependent you mean the amount of exposure to gluten. But damage rates and level of sensitivity also seem to depend on the genetic profile. Those with both genes HLA-DQ2 and HLA-DQ8 seem to be more sensitive to minor amounts of gluten exposure than those with just one of those genes and those with only DQ2 seem to be more sensitive than those with only DQ8. But there are probably many factors that influence the damage rate to the villi as well as intensity of reaction to exposure. There is still a lot we don't know. One of the gray areas is in regard to those who are "silent" celiacs, i.e. those who seem to be asymptomatic or whose symptoms are so minor that they don't garner attention. When they get a small exposure (such as happens in cross contamination) and have no symptoms does that equate to no inflammation? We don't necessarily know. The "sensitive" celiac knows without a doubt, however, when they get exposure from cross contamination and the helps them know better what food products to avoid.
    • MauraBue
      Have Tru Joy Sweets Choco Chews been discontinued??

      By MauraBue · Posted

      Help!  My 5 year old daughter just stopped eating dairy and gluten due to her EoE and Celiac.  Her favorite candy in the world is tootsie rolls.  I did some research, and it sounds like these are the only options for finding something similar, but I can't find them anywhere to actually purchase.  Have they been discontinued??  Does anyone have another recommendation for a gluten-free/DF tootsie roll option?
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      I wonder how long it usually takes and if it is dose dependent as well... or if some ppl have a more pronounced reaction to gluten than others   thanks again for all the great info    
    • suek54
      Awaiting dermatitis herpetiformis confirmation following biopsy

      By suek54 · Posted

      Wow KK, thank you so much for all your attached info. I had a very quick scan but will read more in depth later.  The one concerning corticosteroid use is very interesting. That would relate to secondary adrenal insufficiency I think , ie AI caused by steroids such as taken long term for eg asthma. I have primary autoimmune AI, my adrenals are atrophied, no chance if recovery there. But I am in touch with some secondaries, so something to bear in mind. .  Niacin B3 Very interesting too. Must have a good read about that.  Im sure lots of questions will arise as I progress with dermatitis herpetiformis. In the mean time, thanks for your help.
    • knitty kitty
      Awaiting dermatitis herpetiformis confirmation following biopsy

      By knitty kitty · Posted

      Welcome to the forum, @suek54, I have Dermatitis Herpetiformis, too.  I found taking Niacin B3 very helpful in clearing my skin from blisters as well as improving the itchies-without-rash (peripheral neuropathy).  Niacin has been used since the 1950's to improve dermatitis herpetiformis.   I try to balance my iodine intake (which will cause flairs) with Selenium which improves thyroid function.   Interesting Reading: Dermatitis herpetiformis effectively treated with heparin, tetracycline and nicotinamide https://pubmed.ncbi.nlm.nih.gov/10844495/   Experience with selenium used to recover adrenocortical function in patients taking glucocorticosteroids long https://pubmed.ncbi.nlm.nih.gov/24437222/   Two Cases of Dermatitis Herpetiformis Successfully Treated with Tetracycline and Niacinamide https://pubmed.ncbi.nlm.nih.gov/30390734/   Steroid-Resistant Rash With Neuropsychiatric Deterioration and Weight Loss: A Modern-Day Case of Pellagra https://pmc.ncbi.nlm.nih.gov/articles/PMC12532421/#:~:text=Figure 2.,(right panel) upper limbs.&text=The distribution of the rash,patient's substantial response to treatment.   Nicotinic acid therapy of dermatitis herpetiformis (1950) https://pubmed.ncbi.nlm.nih.gov/15412276/
×
×
  • 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.