Genetic Tests Results

[jeslk]

We just had my daughter (4) tested for celiac.  The IgA came back <2 and the Immunoglobulin A, Qn, Serum came back as 119.  So both negative.  The genetic markers, on the other hand, are positive,  Initially I thought it was two markers, DQ2 and DQ8, but the doctor explained that there are actually four variations on each, for a total of eight, and she is positive on all eight.   She has never had any symptoms that we know of, but we tested her because I was diagnosed with celiac two years ago (after also being diagnosed with non-Hodgkin's Lymphoma and Thyroid Cancer) and I have a family history on my mom's side of thyroid issues.  I have never had a symptom of being glutened (silent celiac?) but have been strictly gluten free since diagnosis.

 

My daughter's doctor is strongly advocating that we put her on a gluten-free diet - arguing that with a 1:7 chance (given the markers), damage will already potentially be done by the time a diagnosis would occur.  He acknowledges that there is a chance that she doesn't ever develop celiac, but still thinks this is the safe course.  I'm inclined to agree, but would love to hear from anyone else with similar experiences.  The whole thing is daunting to say the least.

 

Thanks!

Jess

[nvsmom]

I know next to nothing about the genetic tests so I can't comment on those. There are many around here who do know about that and I'm sure they'll give great advice.  

 

I do know about celiac testing though and your daughter was not given a full panel. I think she only had one out of seven possible celiac tests done along with the control serum IgA test. You could request more testing. The deaminated gliadin peptide test are superior tests for detecting celiac disease in children.

 

This is the full celiac panel:

 

• tTG IgA and tTG igG (I'm assuming she had the tTG IgA test run - it is REALLY common for doctors to just order the one test)
• DGP IgA and DGP IgG (better tests for kids)
• EMA IgA (usually indicates advanced damage and is similar to the tTG IgA test)
• AGA IgA and AGA IgG (older, less reliable tests but thought by some to show non-celiac gluten sensitivity and cleiac gluten sensitivity)
• total serum IgA (the control test she had done)

 

You might want to test her in those (especially DGP's) before going gluten-free. I agree that going gluten-free won't hurt her... not many docs seem to realize that.  

 

Best wishes.

[nora-n]

that was a strange description of the gene test....can you get the actual result, or phone the lab and ask for the result? 

Here is and explanation of HLA DQ:

Open Original Shared Link

 

 

As you see, DQ2,5 and DQ8 are pretty common so it does not mean much.

We usually have two DQ (there is  a constellation where the DQ2,5 is from one half each, though) and there are four halves altogether, not eight....

 

Immunoglobulin A, Qn, Serum is not a celiac test per se