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

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

  • 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. Mari
      - Mari replied to KathyR37's topic in Coping with Celiac Disease
      5

      New here

      Hi Katht - I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was...
    2. Colleen H
      - Colleen H replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      15

      Ibuprofen

      Yes thyroid was tested.. negative Iron ...I'm. Not sure ... Would that fall under red blood count? If so I was ok Thank you for the detailed response..☺️
    3. Colleen H
      - Colleen H posted a topic in Coping with Celiac Disease
      0

      Methylprednisone treatment for inflammation?

      Hi all !! Did anyone ever get prescribed methylprednisone steroids for inflammation of stomach and intestines? Did it work ?? Thank you !!
    4. cristiana
      - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      15

      Ibuprofen

      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse. But it is important not to stop the treatment. Regarding your problems with anxiety, again that is another symptom of a B12 deficiency. I didn't know...
    5. Jmartes71
      - Jmartes71 posted a topic in Coping with Celiac Disease
      0

      My only proof

      Hello still dancing around my celiac disease and not getting medically backed up considering Ive been glutenfree since 1994.All my ailments are the core issue of my ghost disease aka celiac disease. Im angery because the "celiac specialist " basically lightly dismissed me.Im extremely angery and fighting for a new primary care physician which is hard to do...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,877
    • Most Online (within 30 mins)
      7,748
    Christian Konig
    Newest Member
    Christian Konig
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Mari
      New here

      By Mari · Posted

      Hi Katht -  I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal  function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was very true for me. I am still elimination foods from my diet. One person suggested you keep a food diary and that is a good idea but it is probably best just to do an elimination diet. There are several ne and maybe one for celiacs. I used one for a while and started with plain rice and zucchini and then added back other foods to see if I reacted or not. That helped a great deal but what I did not realise that it would only very small amounts of some foods to cause inflammation in my intestine. Within the last few years I have stopped eating any trace amounts of hot peppers, corn and soy(mostly in supplements) and nuts, (the corn in Tylenol was giving me stomach aches and the nuts were causing foot pains). Starting an elimination diet with white rice is better than brown rice that has some natural toxins. In addition it is very important to drink sufficient plain water. You can find out how much to drink for your height and weight online. I do have difficulty drinking 48 ounces of water but just recently have found an electrolyte supplement that helps me stay well hydrated, Adding the water and electrolytes may reduce muscle cramps and gag spams you wrote about. . Also buy some anti-gluten enzyme capsules to take with meals. I use GliadinX advertised here. These are a lot of things to do at one time as they reflect my 20 years of experience. I hope you do what you can manage to do over time. Good luck and take care.
    • Colleen H
      Ibuprofen

      By Colleen H · Posted

      Yes thyroid was tested.. negative  Iron ...I'm. Not sure ... Would that fall under red blood count?  If so I was ok  Thank you for the detailed response..☺️
    • Colleen H
      Methylprednisone treatment for inflammation?

      By Colleen H · Posted

      Hi all !! Did anyone ever get prescribed methylprednisone steroids for inflammation of stomach and intestines?  Did it work ??  Thank you !! 
    • cristiana
      Ibuprofen

      By cristiana · Posted

      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse.  But it is important not to stop the treatment.  Regarding your problems with anxiety, again that is another symptom of a B12 deficiency.   I didn't know what anxiety was until it hit me like a train several months before gastrointestinal issues began, so I can certainly relate.   Two books which helped me hugely were At Last A Life by Paul David (there is a website you can look up) and The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs by Dr Steve Llardi.  Although his book is aimed at people who have depression, following the principals he sets out was so helpful in lessening my anxiety.  Llardi suggests we need to focus on getting enough: - physical exercise - omega-3 fatty acids - natural sunlight exposure - restorative sleep - social connectedness - meaningful, engaging activity   ... and we should feel a lot better. That is not to stay you must stop taking medication for depression or anxiety if you have been prescribed it, but adopting the changes Dr Llardi sets out in the book should really help. Can I just ask two more questions:  1) you say that you are B12 deficient, did they test your iron levels too?  If not, you really ought to be checked for deficiency and, 2) did they check your thyroid function, as an overactive thyroid can be cause rapid heartbeat and a lot of coeliacs have thyroid issues? Cristiana        
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      Hello still dancing around my celiac disease and not getting medically backed up considering Ive been glutenfree since 1994.All my ailments are the core issue of my ghost disease aka celiac disease. Im angery because the "celiac specialist " basically lightly dismissed me.Im extremely angery and fighting for a new primary care physician which is hard to do in Northern Cali.So currently without and looking.Im angery that its lightly taken when its extremely serious to the one who has it.My only evidence is a brochure back in the days when I got news letters when I lived at my parents.It was published in 1998.I was diagnosed before any foods eliminated from my diet. Angery doctors don't take seriously when Im clearly speaking.I did write to the medicine of congress and have case number.
×
×
  • 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.