Confusing test results

[mBird99]

Hello,

 

I have recently sought medical advice from my GP with regard to long term GI discomfort, diarrhoea, pain, bloating, heartburn,  flatulance etc. you name it. 

 

Over the past few months the symptoms were becoming greater hence my visit to my GP. He ordered blood tests and abdominal X-ray. X-ray showed severe constipation for which I am seeking medical treatment.

 

However, the blood test showed the below in my Coeliac Screen, and my GP said the results were “confusing”. After the resolution of my constipation, we plan to reconvene to work on what to do next with regard to the blood test results.

 

IgA was 3.50 (normal range 0.7 - 4.0)

Endomysial Ab (EMA) was NEGATIVE 

 

However, my tTG IgA was 124 (normal range <20). 

 

I also had blood test results that are “consistent with iron depletion”. 

 

This is notable I feel in the context of GI upset for a long time (for almost every day for a number of years,  varying severity) and now severe constipation. 

 

I wondered if anyone else had experience with a high tTG IgA but negative EMA and later diagnosed with Coeliac? (I realise biopsies are required). Or can this indicate other things going on? 

 

NB. I wasn’t on a gluten free diet when I took the test, but I probably hadn’t been consuming as much as I normally had in the past. 

 

Thanks

 

M

 

[cyclinglady]

Welcome!  

You should  seek a Gastroenterologist consult.  It only takes ONE positive on the celiac panel to move forward.  You have a very positive TTG!  Why not the EMA?  One theory could be that that particular test requires a lot of manual work (mistakes can be made). 

I test positive to only the DGP IgA and negative to the EMA and TTG, yet intestinal biopsies revealed severe damage.  There are several celiac tests because not all of them are 100% perfect.  

Keep eating gluten daily until all testing is done.  

(Your constipation should resolve once healed from celiac disease.  It is a common symptom).  

 

Edited October 15, 2019 by cyclinglady

[Ranchers Wife]

In my opinion, it's your GP that's confused about Celiac disease and antibody testing.

Your very high tTg IgA antibody levels should have had your GP sending you immediately to a gastroenterologist for an endoscopy. 

A slightly high tTg IgA can indicate other disease, such as Crohn's disease:

https://www.ncbi.nlm.nih.gov/m/pubmed/21951113/

 

Your tTg antibody levels weren't just a little elevated though, they were pretty high.

In any case, your GP should have sent you on to a gastroenterologist right away when your tTg antibodies came back at that level.

I think that there is a lack of education regarding Celiac disease in this country. Part of it, is that a lot of current research is disseminated by drug reps. The drug companies have a financial interest in getting people diagnosed with a disease that means they could be prescribed their drug. Celiac disease has no drugs... so there's no capitalist incentive to raise awareness or get people diagnosed.

Also, I think there's a disconnect regarding Celiac disease and the First, Do No Harm concept. Doctors are currently so concerned about people having to give up gluten for life, in other words doing harm by taking a patient off gluten... but in my opinion, they should be getting Celiac people off gluten ASAP. Gluten, for a Celiac, is actively harmful. First, do no harm  in regards to Celiac disease, to me , means a lot more screening for Celiac disease, and endoscopy within a few DAYS (not months) of a positive screening test.

 

I'm not a doctor and this isn't medical advice. If I were you, I'd get an appointment with a gastro that is well educated and current regarding Celiac disease, ASAP.

And do keep eating gluten until your testing is complete!

[mBird99]

Thank you both for your replies to my original post. I appreciate the time you’ve took to do so.

It is reassuring to hear that it’s not unusual to have “mis-matchy” results like mine. While I really don’t want to have celiac disease, it’ll at least provide me with some peace of mind if this IS the answer after so long with my symptoms. My main regret is not going to my GP earlier (while I realise and agree that maybe I should have been referred on already to a Gastro, he is a wonderful doctor) and instead going to doctors who bulk-bill (are free) who assumed it was stress or IBS. 

When I go back to him shortly I’ll be sure to press for a gastro referral (which he did mention) and go from there. 

In the meantime I’ll enjoy what gluten-containing foods I can consume before I am inevitably told no more ?

My focus now is getting through the week where I plan to flush my bowels of my constipation! ?

 

M