Results Are So Conflicting, Can Anyone Help Me Understand

[gmcage]

Hi everyone,

 

I am brand new to the board. My son, Stephen, had some very conflicting results in his recent Celiac panel:

 

Immunoglobin A, QN, serum:  203 (range 91-414)

Deamidated gliadin ABS, IGA:  Negative

Deamidated gliadin, ABS, IGG:  Negative

TTG IGA:  Negative 2 (Negative is 0-3)

TTG IGG:  Strongly positive >100 (Positive is >9)

 

Stephen also recently underwent both a colonoscopy and endoscopy with samples taken for biopsy. (I asked the office how many, she said "three pieces of tissue in one specimen cassette"). The biopsy showed no abnormalities.

 

So to me it looks as though everything is negative for Celiac except for that strangely high TTG IGG. My son's hematologist didn't quite know what to make of the results so he got the GI doctor on the phone who said TTG IGA is really the better marker for Celiac and wanted to wait for the biopsy results (which weren't in at that time) before drawing any conclusions. Unfortunately the GI doctor wasn't able to schedule a follow-up visit with us until May 18.  :-( 

 

So I am left wondering what it all means and what to do next. The hematologist suggested that we consider trying a gluten-free diet to see if Stephen improves. The reason for all this testing is Stephen has developed anemia, which doesn't seem to be getting any better despite iron supplements, as well as intermittent rectal bleeding for some months now. He has no abdominal pain, diarrhea or other GI symptoms, and the endoscopy and colonoscopy looked fine except for some internal hemorrhoids. By way of background  Stephen is 24 years old, developmentally disabled, has epilepsy, and attends an adult day program. Adherence to a gluten-free diet is going to be difficult for him to maintain, so I don't want to do it unless we are sure it is necessary.

 

I was hoping the Great Brain at celiac.com could help shed some light on the contradictory results. Does it sound like Celiac to you? What other reasons might there be for such a high TTG IGG? Thanks in advance for any insight! 

 

Mary

[kareng]

That does seem odd. Of course,, only 3 biopsies over his whole intestinal system isn't much. Maybe the hematologist could call or email the Celiac center at the univ of Chicago and see if one of thier docs would look at it. I say the heme doc, because he or she seems to be the most helpful from what you are saying.

[nvsmom]

Welcome to the board.

 

The tTG IgG is 95% specific to celiac disease, meaning that 95 out of 100 positive tests are caused by celiac disease.  Generally speaking, the 5% of false positives are weak positives, and those are caused by other problems like diabetes.  Your son's result was over 10 times the normal upper limit I would interpret that as celiac disease.

 

This report discusses the tests: Open Original Shared Link

 

 ...In a cross-sectional study, 100% of 20 untreated celiac disease patients with IgA deficiency had positive IgG tests for tTG, AGA, and EMA despite negative IgA tests for the same antibodies.Open Original Shared Link Eleven patients with celiac disease and no IgA deficiency all had positive tTG, AGA, and EMA tests, whether testing for the IgA or IgG forms.

 

As you can see from this statement from the report, some people are positive for different tests while negative in others.  It's very very common.  I think it is the most common issue that people bring to this forum.

 

Many doctors like the tTG IgA better because the IgA is part of the mucosal linings (like in the intestines).  IgG is a system wide part of the immune system, and many Gastros seem to lose sight of the fact that celiac disease affects the entire body and not just the GI tract.  I highly doubt he'll be able to come up with an alternate explanation, with proof, that could cause that high tTG IgG result.  Chances are (and a 95% chance at that) that  the positive was caused by celiac disease.  Unfortunately.

 

Have they considered trying the genetic tests to see if he is in the high risk group? Almost all celiacs (97+%) have the DQ2 and / or the DQ8 genes.  Having those genes doesn't mean that one will get celiac disease (30% of the world has those genes) but it does mean that he is in the much higher risk group, and more likely to have celiac disease with that positive tTG IgG than if he doesn't have the usual genes.

 

And I agree about that biopsy, 3 is not enough samples. 6 or more is needed to catch celiac disease.  When fewer than 4 samples are taken the chances of a false negative go way up and can get as high as 1 in 5.

 

If you do go gluten-free, and I would suggest it (I'm not a doctor though) give the diet a good 6 months before you judge its effectiveness.  It can take months for the body to stop making autoantibodies, and then more months before healing is complete.  Issues like arthritis, anemia, and vitamin deficiencies often take a good year before they start to improve.  Be patient.

 

Best wishes.

[gmcage]

That does seem odd. Of course,, only 3 biopsies over his whole intestinal system isn't much. Maybe the hematologist could call or email the Celiac center at the univ of Chicago and see if one of thier docs would look at it. I say the heme doc, because he or she seems to be the most helpful from what you are saying.

Thanks for that idea. The hematologist works at a clinic affiliated with Stanford, so maybe he could also check with one of the celiac specialists there.

[gmcage]

Welcome to the board.

 

The tTG IgG is 95% specific to celiac disease, meaning that 95 out of 100 positive tests are caused by celiac disease.  Generally speaking, the 5% of false positives are weak positives, and those are caused by other problems like diabetes.  Your son's result was over 10 times the normal upper limit I would interpret that as celiac disease.

 

This report discusses the tests: Open Original Shared Link

 

 ...In a cross-sectional study, 100% of 20 untreated celiac disease patients with IgA deficiency had positive IgG tests for tTG, AGA, and EMA despite negative IgA tests for the same antibodies.Open Original Shared Link Eleven patients with celiac disease and no IgA deficiency all had positive tTG, AGA, and EMA tests, whether testing for the IgA or IgG forms.

 

As you can see from this statement from the report, some people are positive for different tests while negative in others.  It's very very common.  I think it is the most common issue that people bring to this forum.

 

Many doctors like the tTG IgA better because the IgA is part of the mucosal linings (like in the intestines).  IgG is a system wide part of the immune system, and many Gastros seem to lose sight of the fact that celiac disease affects the entire body and not just the GI tract.  I highly doubt he'll be able to come up with an alternate explanation, with proof, that could cause that high tTG IgG result.  Chances are (and a 95% chance at that) that  the positive was caused by celiac disease.  Unfortunately.

 

Have they considered trying the genetic tests to see if he is in the high risk group? Almost all celiacs (97+%) have the DQ2 and / or the DQ8 genes.  Having those genes doesn't mean that one will get celiac disease (30% of the world has those genes) but it does mean that he is in the much higher risk group, and more likely to have celiac disease with that positive tTG IgG than if he doesn't have the usual genes.

 

And I agree about that biopsy, 3 is not enough samples. 6 or more is needed to catch celiac disease.  When fewer than 4 samples are taken the chances of a false negative go way up and can get as high as 1 in 5.

 

If you do go gluten-free, and I would suggest it (I'm not a doctor though) give the diet a good 6 months before you judge its effectiveness.  It can take months for the body to stop making autoantibodies, and then more months before healing is complete.  Issues like arthritis, anemia, and vitamin deficiencies often take a good year before they start to improve.  Be patient.

 

Best wishes.

Thanks so much for your thoughtful reply, it was very helpful. It seems so odd that he would have a negative tTG IgA when he is not IgA deficient and still have Celiac...but you're right, it is hard to come up with another explanation for the very high tTG IgG. Thank you again.