Test Results, High Igg

[alcie]

My 6 year old has had cronic C and heartburn since she was an infant.  Sometimes it goes away but she's constipated most of the time even with Miralax or other stool softeners and the heartburn is pretty regular.  We had blood tests run in Feb of last year and the ped GI said to either scope or wait and retest every year or so.  We took her off of dairy for a couple of weeks last year but it made no difference so we went back to her regular diet. 

 

I took her back to the ped GI last week because she was complaining of hearburn more frequently and he ran another set of bloodwork.  His recomendations are the same, scope now or retest the bloodwork every year.  We have not had the genetic tests done but I was tested a few years ago and was negative for both.  We're not comfortable with putting her through an endoscope at this point because she's a very happy child and beyond the issues mentioned above she seems healthy.  Since her other numbers are fine there's no chance she has celiac right?

 

2014:

Demediated Anti-Giladin IGG: 33 strong positive (20-30 is a weak positive, 31+ is a strong positive)

Demediated Anti-Giladin IGA: 1 negative (normal is 0-19)

TTG IGA: less than 2 (negative is 0-3)

Total IGA: 42 (normal is 44-89)

 

2015:

Demediated Anti-Giladin IGG: 33 strong positive (high is greater than 20)

Demediated Anti-Giladin IGA: 2 (high is greater than 20)

TTG IGG: 2 (high is greater than 6)

Quantitative IGA: 52 (normal range is 33-235)

[nvsmom]

  Since her other numbers are fine there's no chance she has celiac right?

 

No. Not at all. A positive test for celiac disease almost always indicates celiac disease.  The specificity of these tests for celiac disease (the percentage of positive tests caused by celiac disease) are quite high; usually around 95%.  On the other hand, the sensitivity of the tests (how often these tests will be positive even if all the patients have celiac disease) are not perfect; most are around 75% but some get lower - meaning 1 in 4 celiacs are missed.  In children and early celiac disease cases, it is not unusual to have false negative tests.

 

The DGP tests are the best tests for children. The tTG tests are generally not as reliable for young kids.

 

Plus, her IgA was, and almost is, deficient.  5% of celiacs are deficient in IgA (compared to 1 in 700 of the regular population) which will cause the IgA based celiac tests (DGP IgA, tTG IgA, EMA IgA) to be falsely negative.   I have only seen an IgA deficient celiac have a positive IgA based celiac test once in the almost three years I have been on this forum. Low IgA will cause false negatives so those IgA based celiac tests are invalid and next to useless.

 

About 97% of celiacs have the DQ2 and (or) the DQ8 genes but 3% do not. While it is very unusual to develop celiac disease without those genes, it does happen.

 

My advice would be to have the scope done and then have her go gluten-free regardless of the outcome (since the biopsy is not perfect either and can miss as many as 1 in 5 celiacs).  If she does better on the gluten-free diet, give it about 6 months) then you'll know it is indeed celiac disease, as the positive DGP IgG would seem to indicate.

 

BTW, when I was a young child my only symptoms were stomachaches (especially later in the day) and constipation, otherwise I was happy, active, played multiple sports, did well in school, and was quite tall.  Because I went undiagnosed for so many years, and continued eating gluten during that time, I developed more (and permanent) health problems by my late teens.  I would say it is better safe than sorry. KWIM?  

 

The only reason to keep retesting is to hope she gets sick enough to get a different positive blood test, and many adults never get the second positive blood test anyways.

 

Some reports to read:

See pages 10-12 about tests: Open Original Shared Link

discusses the usefulness of diagnosing based on symptoms: Open Original Shared Link

More on blood tests:  Open Original Shared Link

 

Best wishes.

[LauraTX]

Has a total IgG been run to assure the IgG tests are accurate?

[alcie]

No, he didn't test her total IgG, just the total IgA.  I had blood tests run a few years ago and my AGA IgG levels were also high, I had damage visible during my endoscopy but he never told me how bad it was.  My GI just said I was reacting to something but my IgA levels were fine and I didn't have the genetic markers so it wasn't Celiac.  My daughter's symptoms are pretty similar to mine (I just have more of them) and both of us have IgA in the normal range but IgG is high.

[Brit1612]

I am new to all this, so someone correct me if I am wrong.....  I am surpised that "visible damage" along with a high blood test result was not enough for a celiac diagnosis for you.  If it were me, I think I would take your results to a new GI, and get a second opinion.  You wouldn't have to re-test, just bring them the test you have already had.  If you do have celiac, that would make it even more likely that your daughter has it as well.  Good luck to you.  We are in the "diagnosing stage" right now ourselves.  So far all we have is a positive ttg igg test, in the middle of our gluten challenge now (don't stop the gluten until you complete whatever testing you plan on doing).  My little guy is about to go through his second endoscopy in a few weeks (he is only 2).  His first was at 18 months and it was very simple and quick.  Good luck!

[Cara in Boston]

Your child has symptoms AND a very positive blood test.  It is likely that your child has celiac disease.  (I would guess you do too, given your issues as well.)  

 

Get a new doctor.

 

The reason they give the whole panel of tests is because everyone reacts differently and giving a variety of tests makes it more likely that the problem will be uncovered.  

 

My son was positive on only the IgG tests (IgA tests all normal, and he produces sufficient IgA) and he was found to have extensive damage when he had his endoscope.  He also did NOT have the genetic markers, or any classic symptoms - further confusing his doctor.  

 

I was positive on only the IgA tests and negative on all the IgG tests.  My endoscopy came back normal but I clearly have Celiac too.  I had all the classic symptoms and they all disappeared when I went gluten free.

 

Remember, even if you go ahead with the endoscopy, they may not find any damage or there may not be enough to measure (yet).  This DOES NOT RULE OUT Celiac Disease.  

 

Why doctors want to wait until there is damage is beyond me.  Your child is uncomfortable and you have positive blood tests telling you why.  

 

If you have a Celiac Support group in your area they should be able to advice you about pediatric GIs who are knowledgeable and up to date on diagnosing kids with celiac.