Jump to content

  • 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):

Would You Help Me Figure Out What My Genetic Test Results Mean?

SiandAshs Mom

Recommended Posts

SiandAshs Mom Apprentice
SiandAshs Mom
Posted

Hello all, 

I recently ordered a genetic celiac test and got the results back. It says, "This patient has a genetic predisposition to celiac disease." But then one part says my risk factor is below the average population - and I have no idea what DQ I am or what that even means... Here's what it says...

 

Locus                         AG1                                      AG2

DQB1                         03:XPFJ                               03:XPFJ

Ser. Equiv                   DQ3                                    DQ3

Allelic results         a whole string of DQB1 plus a bunch of numbers I can post if needed...

DQA                           03:MN                                  05:CMM

Ser. Eqiv                    no corr. antigen                   no corr. antigen

Allelic results              DQA1*03:01/02/03              DQA1*05:05/09/11   

 

 

What does this mean? I really have no idea! And I already had a attg iga blood test done that came back negative (if that makes any difference). Thanks :)

 

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

Celiac.com Sponsor (A8-M):


SiandAshs Mom Apprentice
SiandAshs Mom
Posted
  • Author

Anyone? It has a part that explains my genetic risk profile. It says I am DQX.5 which means my risk ratio is 1:1842 which is significantly less risk than the general population. Does this mean celiac disease is highly unlikely for me? If my husband passed on a celiac gene to our kids and they got the gene from me as well is their risk significantly increased? I'm assuming risk is related to the gene they would receive from my husband, right? Also, could the gene I carry cause non-celiac gluten sensitivity? Is there any info on that anywhere? Sorry for all the questions - I really didn't get a lot of info from the company that did the testing so I'm just trying to make sense of it all.

kareng Grand Master
kareng
Posted

I think you got no answers because this looks like an incomplete report? What company did this test? Genetic stuff is very hard to understand.  Just remember that - 30% of the US population have at least 1 "gene" for Celiac but only about 1% of the population have Celiac.  Just having a gene piece or two does not mean you have Celiac disease.

 

 And the TTG test - did they test total serum IGA?  Without that test,negative results don't mean much.

GF Lover Rising Star
GF Lover
Posted

First, there is no known testing for Gluten Intolerance.  Second, I'm assuming you have a reason to suspect Celiac Disease?  If so then you should discuss your concerns with your Doctor.  As you know, we are not Gene Specialists here.  I really have no idea what your results mean.  These results do not show the two genes they look for in Celiac Disease, DQ2 and 8 I believe.  Maybe you can contact the test company for further explanations. 

 

Sorry I could not help you further.  Good luck.

 

Colleen

kareng Grand Master
kareng
Posted

I missed the gluten sensitivity part - no known genes for that.  no known test for that.  Current research is heading towards NCGS actually being several other "conditions" .  However, more research is needed and is ongoing. 

SiandAshs Mom Apprentice
SiandAshs Mom
Posted
  • Author

I think you got no answers because this looks like an incomplete report? What company did this test? Genetic stuff is very hard to understand.  Just remember that - 30% of the US population have at least 1 "gene" for Celiac but only about 1% of the population have Celiac.  Just having a gene piece or two does not mean you have Celiac disease.

 

 And the TTG test - did they test total serum IGA?  Without that test,negative results don't mean much.

 

Thanks for posting - here's the website Open Original Shared Link . This is the results that they emailed to me. They are also mailing me the report so hopefully there is more info in that. My doctor did run a total IGA and it was normal. Looks like celiac isn't the answer. I appreciate your thoughts!

First, there is no known testing for Gluten Intolerance.  Second, I'm assuming you have a reason to suspect Celiac Disease?  If so then you should discuss your concerns with your Doctor.  As you know, we are not Gene Specialists here.  I really have no idea what your results mean.  These results do not show the two genes they look for in Celiac Disease, DQ2 and 8 I believe.  Maybe you can contact the test company for further explanations. 

 

Sorry I could not help you further.  Good luck.

 

Colleen

Thanks Colleen. Yes, I have a lot of symptoms but no diagnosis from doctors other than IBS, depression, and iron deficiency. I have discussed my concerns and haven't gotten any answers. I've been trying to do what I can to figure things out. If the report they mail to me doesn't contain any more info then I will contact them directly. I just thought someone here may be able to shed some light on the results. I appreciate you taking the time to read and respond :)

1desperateladysaved Proficient
1desperateladysaved
Posted

If you care to discuss it further, do you have a history?   Why did you do this test instead of an antibody tests?  Were you tested for DQ2 and Dq8?  You may not have been checked for celiac at all.

 

Did you have a total IgA test alone?  The total IgA would show that you don't have low antibodies only, I believe.  This would only mean that your test would not false negative for that reason.

 

Did you try a gluten free diet?  Did you notice changes after going gluten free?

 

You do have symptoms that could be celiac.  They could be something else.  Yet, please be sure that you have been checked carefully for celiac as it is serious and often is misdiagnosed.  Better now than later.

 

D

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

Celiac.com Sponsor (A8-M):


SiandAshs Mom Apprentice
SiandAshs Mom
Posted
  • Author

If you care to discuss it further, do you have a history?   Why did you do this test instead of an antibody tests?  Were you tested for DQ2 and Dq8?  You may not have been checked for celiac at all.

 

Did you have a total IgA test alone?  The total IgA would show that you don't have low antibodies only, I believe.  This would only mean that your test would not false negative for that reason.

 

Did you try a gluten free diet?  Did you notice changes after going gluten free?

 

You do have symptoms that could be celiac.  They could be something else.  Yet, please be sure that you have been checked carefully for celiac as it is serious and often is misdiagnosed.  Better now than later.

 

D

Thanks for responding. I did have the ttg iga test done and it was negative (ttg iga is the only celiac blood test available here - they don't ever run a full celiac panel and only run the ema test if ttg iga is positive). Since I still had symptoms which improved on a gluten free diet, I wanted to have the gene test done. My kids have symptoms as well and I wanted tools to advocate for them - I knew I could rule out celiac if my genetic test came back negative. 

The company that produces this gene test is the same company that makes the biocard/celiacsure at-home attg blood test. The gene test is specifically for celiac, so I'm sure the confusion lies in my ineptitude in reading the results!

From the research I have been doing, I think I have half of a DQ2 gene and half of a DQ8 (DQ2 is apparently DQA1*05/DQB1*02 - I have the DQA1*05 allele - and DQ8 is DQA1*03/DQB1*0302 - I have the DQB1*03 allele). I don't know if I am reading this correctly, but when I get the paper copy of my results I will call them and speak to them directly. I just think their results are a little more difficult to read than others. 

I actually just did the biocard attg blood test on my little guy last night and the results were a very faint positive. I plan on taking him in to the doctor to see if he'll send him for the lab tests.

Thanks so much for your thoughts and advice. All the best :)

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,080
    • Most Online (within 30 mins)
      10,442
    AdrianJ
    Newest Member
    AdrianJ
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      Sigh. I posted this yesterday based on the Safeway website. I went back again today to their website to double check. On the page where they are selling Vanilla Bean flavor, it has a distinct Certified Gluten Free label. Other flavors on the Safeway website didn't have the gluten-free statement. Today I went into the store. None of the flavors I looked at, including Vanilla Bean, have a Gluten Free statement. Is it safe? Who knows. The ingredients are either safe or nearly safe (some have "natural flavor"). There are warnings about "contains milk and soy" but not about wheat - this implies they are safe, but again, who knows. On the other hand, every flavor I checked of their Slow Churn line of ice creams has wheat as an ingredient. 100% not safe.
    • knitty kitty
      Edy's and Dreyer's ice cream

      By knitty kitty · Posted

      Do keep in mind that many of the newly diagnosed have lactose intolerance.  This is because the villi lining the intestinal tract are damaged, and can no longer make the enzyme lactAse which breaks down the milk sugar lactOse.  When the villi grow back (six months to two years), they can again produce the enzyme lactAse, and lactose intolerance is resolved.  However, some people (both those with and without Celiac Disease) are genetically programmed to stop producing lactase as they age.   Do be aware that many processed foods, including ice cream, use Microbial Transglutaminase, a food additive commonly called "meat glue," used to enhance texture and flavor.  This microbial transglutaminase has the same immunogenicity as tissue transglutaminase which the body produces in response to gluten in people with Celiac Disease.  Tissue Transglutaminase (tTg IgA) is measured to diagnose Celiac Disease in blood tests.  Microbial Transglutaminase acts the same as Tissue Transglutaminase, causing increased intestinal permeability and inflammation.   New findings show that microbial transglutaminase may be able to trigger Celiac Disease and other autoimmune and neurodegenerative diseases.   Microbial Transglutaminase is not required to be listed on ingredients labels as it's considered a processing aid, not an ingredient in the U.S.  Microbial Transglutaminase has been GRAS for many years, but that GRAS standing is being questioned more and more as the immunogenicity of microbial transglutaminase is being discovered. Interesting Reading:  Microbial Transglutaminase Is a Very Frequently Used Food Additive and Is a Potential Inducer of Autoimmune/Neurodegenerative Diseases https://pmc.ncbi.nlm.nih.gov/articles/PMC8537092/
    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      There is a 10 year old post in this forum on Edy's and Dreyer's ice cream. The information is somewhat outdated and the thread is closed to further comment, so here is a new one. Edy's And Dreyer's Grand Vanilla Bean Ice Cream - 1.5 Quart is labeled "Gluten Free". This is a different answer than years gone by. I don't know the answer for any other flavor at this moment. On 1 May, 2026, Edy's website says: "As a general rule, the gluten in Edy's and Dreyer's® frozen dessert products is present only in the added bakery products, such as cookies, cake or brownies. We always label the eight major food allergens on our package by their common name. We recommend to always check the label for the most current information before purchasing and/or consuming a product. The exception to this rule is our Slow Churned French Silk frozen dairy dessert, which contains gluten in the natural flavors." https://www.icecream.com/us/en/brands/edys-and-dreyers/faq It seems that Edy's and Dreyer's are more celiac-friendly than they were 10 years ago. Once I found enough information to make today's buying decision, I stopped researching.
    • Aretaeus Cappadocia
      EDG 3 years ago fine, now it shows focal villous blunting,

      By Aretaeus Cappadocia · Posted

      probably not your situation @Mimiof2, but allow me to add one more to @trents list of celiac-mimics: "olmesartan-induced sprue-like enteropathy"  
    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      My dad had an Abdominal Aortic Aneurysm.  Fortunately, it was discovered during an exam.  The doctor could feel my dad's heart beating in his stomach/abdomen.  The aneurysm burst when the doctor first touched it in surgery.  Since he was already hooked up to the bypass machine, my dad survived ten more years.  Close call! Triple A's can press on the nerves in the spinal cord causing leg pain.  I'm wondering if bowing the head might have increased the pressure on an aneurysm and then the nerves.   https://gulfcoastsurgeons.com/understanding-abdominal-aortic-aneurysm-symptoms-and-causes/ Abdominal Aortic Aneurysm Presenting as a Claudication https://pmc.ncbi.nlm.nih.gov/articles/PMC4040638/
×
×
  • Create New...