Testing results and genetics

[NessieV]

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

[RMJ]

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]

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]

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 July 24, 2018 by NessieV

[NessieV]

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 July 24, 2018 by NessieV

[RMJ]

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]

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