Deamidated Gliadin Igg Question

[appletree729]

My 8 year old daughter's bloodwork indicated a high deamidated gliadin (IgG) result last fall (21 - positive was anything > or = to 20).  Her doctor suggested we retest after several months since the result was only slightly positive - thinking that perhaps it was the beginning of celiac?  Or maybe nothing or something else besides celiac.

 

Anyway - before we test again, I was wondering if anyone might mind catching me up on the latest as far as testing.  My daughter has a very high level of anxiety about needles and I want to make sure we get all of the appropriate tests and won't have to go back!

 

Here is what has been ordered:

 

DGP - IgA & IgG

 

IgA, Quant, Serum

 

T-Transglutaminase IgA

 

Endomysial Ab IgA w/rfx - LC

 

Our doctor is a pediatric GI who specializes in celiac disease, so I'm guessing that's a good selection of tests to order!  I'm still curious though, as to why the positive test earlier wasn't treated with more concern…  I'm also curious to know whether or not there are any additional tests that are recommended.

 

Also - is it still thought that a biopsy is needed for a diagnosis?  Or are there any tests or combination of positive tests that are now considered sufficient to diagnose without a biopsy?

 

thanks so much for any advice!

[RMJ]

That is a very low positive. With this type of test, the values can vary about 5% if you run the same blood sample several times. It could easily be 19 (negative) or 20 next time.

That does look like a good list of tests to run. The "w/rfx" (with reflex) might mean they will only run it if the Ttg is positive. That is what my doctor's lab does. You might want to check that and ask to have it run no matter what. Or it might mean they will do an EMA titer only if the EMA is positive.

[nvsmom]

Looks good to me too.  You may want to request the tTG IgG (Tissue transglutaminase IgG) if you can.  It's not the best test for celiac disease out there but it can occasionally catch a celiac that the other tests miss.  If you can't get it, you are well covered.

 

My labs also do not run the EMA IgA unless the tTG IgA was positive.  The EMA IgA is very similar to the tTG IgA but it tends to detect more advanced disease. It is pretty unusual for the EMA IgA to be positive when the tTG IgA is not.

 

Most doctors like to use a biopsy still but not all do.  Some doctors will diagnose celiac disease with a single blood test, but most won't.  The DGP IgG and EMA IgA are the most specific celiac disease tests out there.  I think they both are 98-100% specific to celiac disease which means 0-2% of positive results are caused by something other than celiac disease.

 

Your daughter has a positive DGP IgG so I suspect that she has celiac disease, or early celiac disease which may be hard to detect with other tests.  If no other blood tests support that diagnosis, i would suggest having her go gluten-free for at least 6 months and then retest to see if her number comes down.  The DGP tests tend to respond quickly to a change in diet so if it is celiac disease, a period of eating gluten-free for 6 months should make a difference.

 

She could also have the genetic tests done (DQ2 and DQ8).  97% of celiacs have those genes, so it is unlikley that she has celiac disease if both are negative.

 

Dr Fasano, a leading celiac disease researcher suggests that celiacs should have 4 of the following 5 criteria to be diagnosed with celiac disease:

1. celiac symptoms
2. positive blood test(s)
3. positive biopsy
4. positive genetic tests
5. positive response to the gluten-free diet

One doesn't need the biopsy for a diagnosis... Some doctors don't require many criteria be met.  I was diagnosed with celiac disease with numbers 1, 2, and 5.

 

Best wishes.

[appletree729]

Thank you both so very much for your responses!  I really appreciate it - looking forward to hopefully getting some answers.  I'm quite sure she has the gene - she specifically has not been tested, but others in our family have.  I have two copies, my other daughter has two copies, my husband has one copy but celiac runs in his family and although all of his testing came back negative, he was so sick he went gluten free anyway and is doing *much* better.  He is pushing a bit to get the kids gluten free as well, but I really want a diagnosis for them before we go that route.  

 

Anyway - hope everybody has a good day - thanks again for taking the time to respond.