Ttg Iga Negative; Endomysial Iga "positive - Abnormal"

[Pizza D'oh]

My son has Celiac (diagnosed 2 weeks ago by blood test and endoscopy/biopsy.)  My wife and I both got blood tests for it last week and mine came out negative, while hers is a mixed bag as you can see below.   

 

Report:  T-TRANSGLUTAMINASE (TTG) IGA

Result:  <2

Ref. Range:  0-3

Units:  U/ML

Notes:  NEGATIVE 0 - 3 WEAK POSITIVE 4 - 10 POSITIVE >10 . TISSUE TRANSGLUTAMINASE (TTG) HAS BEEN IDENTIFIED AS THE ENDOMYSIAL ANTIGEN. STUDIES HAVE DEMONSTR- ATED THAT ENDOMYSIAL IGA ANTIBODIES HAVE OVER 99% SPECIFICITY FOR GLUTEN SENSITIVE ENTEROPATHY.

 

Report:  ENDOMYSIAL ANTIBODY IGA

Result:  POSITIVE

Ref. Range:  NEGATIVE

Notes:  ABNORMAL

 

 

 

 

 

 

We are still waiting on a follow-up appointment with our physician to discuss the results.  He does not see many Celiac patients, so we'd like to have as much information as possible from anyone here who can interpret the test results. 
 

Could the negative TTG and positive IgA combination be due to some sort of deficiency?  Does this combination of results in any way increase the likelihood that the IgA positive might be a false positive? 

 

Thanks in advance... we'll be hanging around here for a while! 

[nvsmom]

Welcome to the board.  

 

The EMA IgA is very very specific to celiac disease. If you have a positive then it is pretty much a sure thing that you, well your wife, has celiac disease. Take a look at thois report from the World Gastroenterology Organisation (page 12) and you can see that the EMA IgA is indeed 98-100% specfic to celiac disease.  Open Original Shared Link  She (most likely) has celiac disease. A negative EMA IgA titre is usually 1:10 or lower. Positive is generally 1:20, 1:40, 1:80, 1:160, etc.; it doubles every time.

 

The tTG IgA is a very similar test to the EMA IgA, but the EMA IgA tends to be positive when the damage, and disease, is more advanced.  The tTG IgA has a sensitivity of 75-95%, so I am guessing that she is one of the 5-25% of celiacs that the test misses.  It happens.

 

With a family history of celiac disease, and a positive test, I think that points to celiac disease. I know of no other causes of a positive EMA IgA. (A weak positive ttG IgA can be caused by thyroiditis, crohn's, colitis, liver disease, diabetes, and infection about 5% of the time.)

 

A false negative tTG IgA can be caused by a deficiency of IgA in about 5% of celiacs. I doubt she is low in IgA because she had a positive EMA IgA titre, but it is possible.

 

The doctor may want to do a biopsy or more tests. Don't go gluten-free yet or that will affect her results by causing false negatives.

 

Other tests to try include:

ttG IgG

DGP IgA and DGP IgG

AGA IgA and AGA IgG (older and less reliable tests)

total serum IgA (a control test)

endoscopic biopsy.

 

Best wishes to her!

[Pizza D'oh]

Thank you very much for your response! 

 

We are now operating under the assumption that she has celiac disease and has probably had it since she was a teenager, if not longer.  Perhaps she had no typical symptoms, or her body just learned a way to ignore or work around the symptoms. 

 

She has an appointment with a GE who may order more blood tests before moving to the endoscopy & biopsy.  Even if they are willing to diagnose without the biopsy, we are both thinking it is worth going through the relatively simple procedure to get 100% confirmation and to see what sort of damage has been done. 

 

We feel very fortunate to have gotten a diagnosis for our 15 month old son.  Reading through the forums here and elsewhere, and speaking to people who have celiac disease (or are still undiagnosed but clearly have issues with gluten) I'm amazed that we were able to get a diagnosis so quickly.  He's been off gluten since July 2, and the difference is night and day! 

[nvsmom]

Thank you very much for your response! 

 

We are now operating under the assumption that she has celiac disease and has probably had it since she was a teenager, if not longer.  Perhaps she had no typical symptoms, or her body just learned a way to ignore or work around the symptoms. 

 

She has an appointment with a GE who may order more blood tests before moving to the endoscopy & biopsy.  Even if they are willing to diagnose without the biopsy, we are both thinking it is worth going through the relatively simple procedure to get 100% confirmation and to see what sort of damage has been done. 

 

We feel very fortunate to have gotten a diagnosis for our 15 month old son.  Reading through the forums here and elsewhere, and speaking to people who have celiac disease (or are still undiagnosed but clearly have issues with gluten) I'm amazed that we were able to get a diagnosis so quickly.  He's been off gluten since July 2, and the difference is night and day! 

I'm so glad your little guy is feeling better already!    Sometimes the youngsters bounce back at a rate that we adults can only envy.  

 

When she has the biopsy done, try to get at least 6 samples taken. Celiac damage can be patchy so the more samples taken, the more likely that it will be caught.

 

Also, remember that the biopsy is not foolproof. The last stat I saw stated that the biopsy misses 20% of celiacs - that's 1 in 5!  Take the biopsy with a grain of salt. The EMA IgA is very specific to celiac disease. A positive means she has celiac disease. If the biopsy ends up negative (it happens) it doesn't change the fact that she has a positive EMA and a family history of celiac disease.  KWIM?

 

Best wishes with the biopsy.  Make sure she is eating gluten in the 2-4 weeks prior to the test.

[Pizza D'oh]

A quick follow-up here...

 

The GE ordered a new more complete panel of blood tests for my wife, but he proceeded to schedule the biopsy based on the "partial" results we already had.  The new blood panel came back more strongly positive (don't have the numbers to report here.) 

 

The biopsy went fine, but then the lab took forever to send back results (5-7 days my ass!)  Then the GE left on vacation the day before the results came back.  Apparently none of the other professionals at the GE firm were willing to make any sort of diagnosis.  (They made it sound like they were going to just read the chart and tell us, but then I guess when they saw the chart they backed off of that and said we'd have to wait.)  So we ended up waiting a few more weeks, but we have our diagnosis now... my wife has Celiac. 

 

We are on a Whole30 diet now (we'll start re-introduction of foods in 6 days.)  So far so good.  After this, a regular gluten-free diet is going to seem like a piece of ca... err... it's going to be a lot easier! 

 

The boy is doing fine--happy as a clam, actually!  He still gets a bit of a pot belly after dinner, which scares us because despite dozens of conversations with his caretakers, you just never know (especially with toddlers) whether gluten is sneaking in somehow (it sure as hell isn't coming from anything under our roof!)  But maybe that's just how toddlers with big appetites look.  He has a follow up with his pediatric GE in a couple of weeks so we will see what they say. 

 

He has recovered a lot of weight but is still way behind on height.  He went from 98th percentile at birth and for the first few months, all the way down to about 8th percentile at the time of his diagnosis.  He's back up around 26th percentile now but I'm afraid that he'll forever be short due to the damn disease stunting his growth at a critical time.  Oh well, at least he'll fit in airplane seats and won't hit his head as much as his old man. 

[kareng]

He isn't even 2 yet.  He has at least 16 more years of growth to catch up.  One of my son's grew an inch between 18 1/2 and 19.