Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Testing results and genetics


NessieV

Recommended Posts

NessieV Newbie

Hi :)

My mother just got her results back: she has two copies of HLA-DQ2 (therefore is HLA-DQ2 homozygous), however her IgA is within normal range. I never got tested for celiac disease, but based on my mom's results, I must have at least one copy of DQ2. Both her and I have had serious albeit very different digestion problems, which we assume have something to do with gluten. I recently tried going gluten free for 10 days (I was on vacation) and felt absolutely amazing, whereas I get diharrea and horrible migraines whenever I do eat gluten.

My mother's doctor didn't specifically tell her to go on a gluten free diet right away, but she really does feel terrible, which is why I've decided to seek advice from people who have delt with celiac disease themselves. Would you suggest a gluten free diet or not?

Thank you in advance and I'm sorry for my English (I am far from being a native speaker).

Love, N


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



Celiac.com Sponsor (A8-M):



RMJ Mentor

I’m not sure what you mean by “her IgA is within normal range.”  Is that total IgA, TTG IgA or DGP IgA?  Were there any IgG tests?

p.s. your English is fine!

cyclinglady Grand Master

Welcome!

If you are both on a gluten diet, consider getting tested before going gluten free.  Please research the topic carefully.  Your doctor may not be celiac savvy.    Going gluten free before testing is NOT recommended by all celiac disease experts.  Here are the tests:

Open Original Shared Link

Some 30% of the population carries the genes that COULD develop into celiac disease, but only a few actually do.  The gene test helps rule out celiac disease, not diagnose it.  So, it is possible that your mother might have celiac disease or she could develop it.  The IgA test?  I assume  it is the Immunoglobulin A.  In the case of celiac disease testing it is used as a control test.  It tells the doctor that the celiac antibodies IgA tests actually work.  

I hope this helps. 

NessieV Newbie
(edited)
2 hours ago, cyclinglady said:

Welcome!

If you are both on a gluten diet, consider getting tested before going gluten free.  Please research the topic carefully.  Your doctor may not be celiac savvy.    Going gluten free before testing is NOT recommended by all celiac disease experts.  Here are the tests:

Open Original Shared Link

Some 30% of the population carries the genes that COULD develop into celiac disease, but only a few actually do.  The gene test helps rule out celiac disease, not diagnose it.  So, it is possible that your mother might have celiac disease or she could develop it.  The IgA test?  I assume  it is the Immunoglobulin A.  In the case of celiac disease testing it is used as a control test.  It tells the doctor that the celiac antibodies IgA tests actually work.  

I hope this helps. 

First of all, thank you so much for answering my confusing question. I'm only 19, so I'm quite all over the place at the moment.

Neither of us consume large amounts of gluten, because it makes us feel horrible (we both get the common symptoms of celiac disease). I am aware that you need to be on a gluten diet in order for any test results to be accurate. My mom was told to eat as much gluten as she can before the testing, I on the other hand have never been tested for anything. (The family doctors don't seem to take neither of us seriously and think we're makng all of this up, which is why it took several years for my mom to get tested.) The waiting lists in our country are over 6 months long and I honestly can't imagine having to watch my mom be in exruciating pain for that long, while she waits for an endoscopy. That's the reason why I'm seeking advice...

The test results she got are rather confusing to me, so I apologise in advance for any mistakes I make. You're right, the IgA I mentioned was just a control test. The tTG came back within normal range (which I'm guessing means that she does't have celiac disease), but she does have the DQ2 gene, therefore she might develop celiac disease someday. Am I understanding this correctly? Anyway the results literally state that she has a considerable chance of having celiac disease, however going on a completely gluten free diet isn't necessary.

Edited by NessieV
NessieV Newbie
(edited)
2 hours ago, RMJ said:

I’m not sure what you mean by “her IgA is within normal range.”  Is that total IgA, TTG IgA or DGP IgA?  Were there any IgG tests?

p.s. your English is fine!

Thank you for answering.

I'm sorry, I got the names of the tests confused. The tTG was within normal range, therefore I'm guessing she doesn't have celiac disease, however she does have the gene for it, which means she might develop it someday.

P.S. Thank you :)

Edited by NessieV
RMJ Mentor

Not everyone is positive on the tTG test.  Some are only positive on the DGP test (deamidated gliadin peptides).  She might still have celiac, or it might be non celiac gluten sensitivity.

NessieV Newbie
21 hours ago, RMJ said:

Not everyone is positive on the tTG test.  Some are only positive on the DGP test (deamidated gliadin peptides).  She might still have celiac, or it might be non celiac gluten sensitivity.

Thank you very much for helping :)

Best wishes, N


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



Celiac.com Sponsor (A8-M):



Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to barb simkin's topic in Related Issues & Disorders
      8

      celiac, chocolate and alcohol

    2. - barb simkin replied to barb simkin's topic in Related Issues & Disorders
      8

      celiac, chocolate and alcohol

    3. - trents replied to barb simkin's topic in Related Issues & Disorders
      8

      celiac, chocolate and alcohol

    4. - barb simkin replied to barb simkin's topic in Related Issues & Disorders
      8

      celiac, chocolate and alcohol


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,334
    • Most Online (within 30 mins)
      7,748

    Julie369
    Newest Member
    Julie369
    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

    • trents
      So, you had both and endoscopy with biopsy and a colonoscopy. That helps me understand what you were trying to communicate. No, no! It never occurred to me that you were trying to mislead me. It's just that we get a lot of posters on the forum who are misinformed about what celiac disease is and how it is diagnosed so I need some clarification from you which you were so gracious to give.
    • barb simkin
      I had both the genetic genes for celiac.  My gastroenologist advised he also took a biopsy during one of my colonoscopies and endoscopy and advised I had celiac disease, along with stomach ulcers from my esophagus stomach down to my small bowel. I was shown the ulcers on the catscan and endoscopy report.  I also had polyps in 3 places throughout my large bowel. I was on a strict diet for months following.  I am sorry if I didnt define how I was diagnosed with celiac disease.  I am sorry if you think I was misleading you. I also had to pay $150.00 for the genetic testing.
    • trents
      So, I'm a little confused here. I understand you to say that you have not been officially diagnosed with celiac disease. Is this correct?  You have had genetic testing done to check for the potential for developing celiac disease and that was positive. Is this correct? I think you meant to type "gluten sensitivity" but you typed "gluten insensitivity". Just so we are clear about the terminology, there is celiac disease and there is NCGS (Non Celiac Gluten Sensitivity). They are not the same but they have overlapping symptoms. Celiac disease causes damage to the small bowel lining but NCGS does not. NCGS is often referred to in short form as gluten sensitivity. However, people often use the terms celiac disease and gluten sensitivity interchangeably so it can be unclear which disease they are referring to. Genetic testing cannot be used to diagnose celiac disease but it can be used to establish the potential to develop active celiac disease. About 40% of the general population has one or both of  the genes that have been most strongly connected with the potential to develop active celiac disease but only about 1% of the population actually develops active celiac disease. This makes the genetic test useful for ruling out celiac disease but not for diagnosing it. A colonoscopy cannot be used to diagnose celiac disease because it doesn't permit the scope to go up into the small bowel where celiac disease does the damage. They use an endoscopy ("upper GI) for checking the small bowel lining for celiac damage.
    • barb simkin
      I did nor read the chocolate pkg as it was of fered to me and I ate 2 pcs. I do know that only very dark chocolate and and a very few others are gluten free. Most alcohols contain gluten. I have several yrs of not knowing my celiac condition as docs would not do the test. After looking on the internet about my sufferings I insisted on the gene trsting which showed positive for gluten insensitivity and a biopsy on my next colonoscopy that also showed positive which could not help the damage done to my small bowel. So I very rarely have a glass of wine
    • trents
      @barb simkin, are you sure the chocolate products are gluten-free and not "manufactured on equipment that also handles wheat products and tree nuts", i.e., cross-contamination? And what kind of alcoholic beverages are we talking about? Most beers are made from gluten-containing grains. Just checking.
×
×
  • Create New...