First Post - Help Sorting Through Lab Results

[RattleandHum]

Hello all. 

 

After visiting the doctor for rather non-descript reasons (general fatigue, not feeling well, heartburn, etc.) and a round of labs, the doctor called me to tell me that I tested positive for Celiac Disease and referred me to a local GI specialist.

 

That said, I am a bit confused at the actual resutls of test. Nothing is in out of the negative range, yet the Endomysial Antibody IGA line shows positive with an Abnormal flag. That's all I see here. I'm not sure how to interpret this just yet. All the actual unit measurements are well below a positive threshhold. 

 

I had not restricted gluten in my diet prior to testing, so I am very curious at these findings. Only one thing of note - I am undergoing regular immunotherapy for allergies (seasonal & environmental). I have a visit with my allergist tomorrow to discuss whether or not the allergy shots could elevate the right antibodies in order to trigger a false positive. Is that even likely?

 

For what its worth - I'm an otherwise healthy 36 year-old male who is partial to craft beer (hence the constant presence of gluten in my normal diet). The only other revelation on the lab work was a Vitamin D deficiency.

 

Any insight?       Thank you!

 

[RMJ]

Endomysial antibody is usually pretty specific for celiac, although it does rely on a human looking through a microscope. Unfortunately, Labcorp only says positive or negative and does not give the titer, which would enable you to know if it was a weak positive or a strong positive. (I tried to get my titer from them but couldn't).

[RattleandHum]

Thanks RMJ. I realize the potential impact but I'm trying to get a sense of how these results might reconcile. It sould seem that the tTG IgA should have been higher, too, as its a more sensitive test.  Is it possible that we are just catching the disease in early stages? I know we won't be able to confirm without an actual biopsy...

 

Aside - Isn't it strange that Labcorp wouldn't include the titer in this report?

[RMJ]

It definitely is unusual to have TTG negative and EMA positive. I searched the medical literature and found one paper that suggested it could be early celiac (see section on latent celiac):

Open Original Shared Link

The lab that my doctor now uses doesn't even do the EMA unless the tTG is positive. And it is strange, and very annoying, that Labcorp doesn't give a titer for EMA. I wonder if they even do a titer, or just stop if the 1:10 dilution is positive.

[LauraTX]

Welcome to the forum!

RMJ gave some very helpful info above.  The best way to get additional pieces to the diagnostic puzzle would to be to go see the GI and get an endoscopy done.  Make sure they get at least 6 biopsies as recommendedOpen Original Shared Link.  That way they don't miss anything as damage can be patchy, and you definitely need something conclusive.  I don't think the allergy shots are known to affect the Celiac bloodwork but it is always good to check with your allergist about that.

 

Also, have your regular doctor pull a total IgG in the meantime to ensure the IgG associated results are not a false negative.  (That is unlikely but with goofy results good to double check)

 

Edit: Spelling

[nvsmom]

Yep, that EMA is the most specific test for celiac disease there is.  The World Gastroenterology Organization reports that a positive EMA IgA is specific to celiac disease 98-100%, which means you have less than a 2% chance of your result not being caused by celiac disease....Open Original Shared Link 

 

It's probably celiac disease, but it is very unusual to have a positive EMA with a negative tTG.  I think I've only seen that twice in the three years that I've been on this board, and I check in here most days (I need a life  LOL).

 

Don't go gluten-free yet.  The GI specialist may want to retest you and do an endoscopic biopsy (at least six samples like LauraTx said).  Enjoy a stout for me.

 

Good luck.

[RattleandHum]

Upate time... and its somewhat anti-climatic.

 

Every doctor that reviewed my bloodwork concurred - very unusual to have the EMA present without elevated tTG levels (while being well withing normal IGA levels) . In fact, during my initial consultation with my GI specialist, he said, "If I had a nickel to bet, I'd bet AGAINST you having celiac disease."

 

Two weeks later, the biopsy confirmed that. No presence of damaged celia due to celiac disease. The only abnormality to show up during my endoscopy was some esophageal damage due to acid reflux.

 

So, I'm on a daily dose of Zegerid until I revist GI in three weeks. We keep an eye on things going forward, but I am to proceed as if I do not have celiac disease.

 

So, for now at least, I am in a vast minority that has the EMA present in my system without having active celiac disease.

 

It also raised questions about the EMA test itself... its the only test result that is visually (somewhat subjectively) confirmed. So not the specificity of the test - it is EXTREMELY specific. But the overall accuracy. Another conversation for another day.

 

I guess the takeaway for anyone else that gets the same kind of result as me is follow through with the biopsy.

[nvsmom]

I would still use your own judgement in the long run.  We know the EMA IgA is 98 to 100% specific to celiac disease which means that up to a maximum of 2% of positives are caused by something other than celiac disease (could be lab error).  You could be one of the tiny minority who has a false positive, but the odds are against you.  If you hadn't had so many other negatives, I would say you are a celiac for sure.

 

All of those negative tests can have a sensitivity as low as 70%, closer to 40% for the tTG IgG, so false negative can't be ruled out entirely.  Even the biopsy gets false negatives up to 20% of the time.  Most celiacs are not positive on all of their tests, although you do have an unusual result...

 

Can you find out what your titre was?  I think EMA IgA is considered positive once it gets around 1:80 so 1:160 and 1:320 are definitely positive.   I think 1:40 is a negative for most labs but I'm not sure.  1:20 and below is negative.

 

In the end if you are unsatisfied with the doctors' explanations, I think you should consider the gluten-free diet for 6 months.  If your symptoms improve, and your EMA IgA goes down, then you know it was probably celiac.  If you continue to eat gluten and feel unwell still, retest and see what happens.  I would request a retest of the labs when you see the gastro since you are eating a normal diet still.

 

Good luck!