Negative Iga Transgluaminase But Raised Iga Endomysial Antibody ....plz Help

[sunny84]

Hello just after some advice. I always have a low ferritin and I've been feeling dizzy for a few weeks now. I've had my ferritin level repeated and it's still low despite iron and my doc ordered vitamin b12 and coeliac testing. My tranglutaminase is negative but my IgA endomysial antibodies are slightly raised at 4.69. I'm worrying now because of my dizziness. I'm 30year old female btw. Does this mean I could have coeliac disease?

[nvsmom]

Welcome to the board.  

 

The endomysial antibodies (EMA IgA) are usually run as a titre with results that look like 1:10, 1:20, 1:40, 1:80, 1:160, etc.; a positive is usually 1:80 or 1:160.  Could you post the range of your tests?  They vary between labs a fair bit.

 

Generally, if you have a positive EMA IgA, it indicates celiac disease.  That tests is 98-100% specific to celiac disease, meaning that out of 100 positives, at least 98 of them are caused by celiac disease. This report shows the test accuracy on page 12: Open Original Shared Link  A good read if you want info on the tests.

 

The tissue transglutaminase (I assume it was the tTG IgA) is also a good test, although it is not perfect and can miss up to 25% of celiacs.  It is very unusual to have a positive EMA IgA and a negative tTG IgA - I think I've only seen that once.

 

I've rambled... If you have a positive EMA IgA, you most likely have celiac disease.  If in doubt, there are more tests you could do (tTG IgG, DGP IgA, DGP IgG, total serum IgA) otherwise good luck on the gluten-free diet!  

[GottaSki]

As Nicole posted the EMA-IgA is usually positive with positive tTG-IgA

I'd vote for a follow up complete celiac antibody panel. This could help determine your status and confirm if the first tests were accurate. Lab errors are possible.

[sunny84]

Thanks for your replies .... My results were written as follows:

IgA tissue transglutaminase ab - negative

IgA for endomysial antibodies - 4.69gl (0.90-4.50)

My doc said I may not have it and to try and get my ferritin up and have the test repeated in 4 weeks. I suffer with major health anxiety and this is driving me mad

[nvsmom]

I really dislike it when labs do not give the exact normal range - I don't like trusting "negative" or "positive". It looks like a positive EMA test but the EMA IgA is usually given as a titre - meaning they keep doubling the dilution until the endomysial antibodies are no longer detectable.  Your test is unusual.

 

I agree that you may want to retest again, although a positive EMA is a positive for celiac disease - sort of like a positive pregnancy test means you will have an addition to the family in 9 months... Both are very specific tests.  

 

When you do retest, get more tests done. A few positive tests are often easier to believe than one positive test, and not many celiacs have all positive tests so you are in good company around here.

 

Request the:

tTG IgA and tTG IgG (tissue transglutaminase)

DGP IgA and DGP IgG (deaminated gliadin peptides)

EMA IgA (see if you can get the titre too)

total serum IgA (a control test - 5% of celiacs are too low in IgA for accurate IgA based celiac tests, like ttG IgA)

AGA IgA abd AGA IgG (anti gliadin antibodies) are older and less reliable tests

 

Try to get some IgG based tests done as some people are only positive in those. Also try to get the DGP tests done (or the older AGA tests if the new DGP tests are not available where you are) as some celiacs are positive in those tests.

 

Keep eating gluten (1-2 slices of bread per day) until testing is done.  If possible, I would try to have the tests done sooner to reduce your anxiety level; I know I personally find it incredibly hard to be patient through the testing process.  You can always retest your ferritin levels at a later date.  BTW, you know that low ferritin is a symptom of celiac?  Low Mg, D, B12, K, Ca, A, zinc, and Cu are also very common and are good to get checked.

 

You may want to request the endoscopic biopsy. It catches over 80% of celiacs and doctors put a lot of stock in the results (although I am not completely sure why).

 

Hang in there.  It's an awful process, isn't it?  

[GottaSki]

Strongly advise adding the missing antibody tests when you retest and try not to worry. If celiac disease is responsible for some of your health issues - anxiety is a symptom associated with celiac disease as are over 300 other symptoms - a diagnosis will lead to improved health. No medication is required for the treatment of celiac disease, complete removal of gluten is the only treatment. While tough at first, once the transition is complete it is not hard at all and the benefits are enormous.

Complete Celiac Antibody Panel:

Total Serum IgA

tTG - both IgA and IgG

EMA-IgA

DGP - both IgA and IgG

Hang in there and don't remove gluten from your diet until you are certain testing is complete.