Help - TTG IgA 192.2. What does it mean?

[Joel McK]

Hi everyone, 

I'm just looking for a bit of help. Firstly I never expected to be Coeliac or have any issue with Gluten. I do have some of the symptoms including pain etc. but never once suspected Gluten. 

 

After some tests my doctor recommended a test and the results have come back what appears to be very high levels of TTG. The NHS app says I have, "tissue transglutaminase igA lev 192.7 K/UL". It also says the normal range is 0.0 - 14.9.

I've not got to wait 4 weeks for a phone appointment with my doctor before I can find anything out of next steps. The app says consider Endoscopy and a Jujunal Biopsy. But it's just notes from the lab and not information from my doctor. I really have no idea what to expect as the levels I've seen others talk about are much lower.

It's been a few days since my phone appointment was booked, but i can't stop worrying/thinking about it and i have weeks before i can speak to someone about the results. I was hoping someone here may be able to shed a little information. 

Thank you and my apologies for the long post.

 

 

 

 

[Scott Adams]

Your test results indicate that you are almost 13 times the cutoff level for a positive celiac disease test, which means you most likely have it. In the UK and other places many doctor now diagnose celiac disease without a biopsy/endoscopy when you are 10x or more that the cut off, so you may not have to undergo that procedure depending on what your doctor says. 

This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.

 

 

[Joel McK]

Thank you Scott. I really appreciate you taking the time to reply. I'm going to ask for the Endoscopy if I can have it, as I've read bloods aren't 100%. I'm also going to call the doctors up today and push for an earlier phone consultation. 

Thank you again.

 

[cristiana]

Hi Joel, 

Just saying 'hi' as I'm a UK Coeliac.

When my first blood tests pointed to coeliac disease, my local NHS lab didn't disclose tTG readings if they were over 100, the paperwork would just return the results as '>100'.  It is great that you have a lab which reports on the numbers as accurately as that, it will be very helpful as the months go by for you to monitor your progress.   

Also to reassure you that having been on this forum now for ten years, I have learned it isn't uncommon to have levels higher than 100 as an undiagnosed/non-diet compliant coeliac.

Remember you must continue to eat gluten right up until your endoscopy (if you have to have one).  It is recommended that you consume 2 slices of normal (i.e. glutenous) bread every day, or the equivalent.  When I was awaiting my test, I made the most of eating some of the gluten containing foods I knew I'd miss once on a gluten free diet.  But on the positive - should you be a coeliac, a lot of that food that I thought I'd never eat again (such as Weetabix) now has a gluten-free equivalent.  But I am still waiting for McVities to manufacture gluten-free Penguin bars!😊

Cristiana

[Joel McK]

8 hours ago, cristiana said:

Hi Joel, 

Just saying 'hi' as I'm a UK Coeliac.

When my first blood tests pointed to coeliac disease, my local NHS lab didn't disclose tTG readings if they were over 100, the paperwork would just return the results as '>100'.  It is great that you have a lab which reports on the numbers as accurately as that, it will be very helpful as the months go by for you to monitor your progress.   

Also to reassure you that having been on this forum now for ten years, I have learned it isn't uncommon to have levels higher than 100 as an undiagnosed/non-diet compliant coeliac.

Remember you must continue to eat gluten right up until your endoscopy (if you have to have one).  It is recommended that you consume 2 slices of normal (i.e. glutenous) bread every day, or the equivalent.  When I was awaiting my test, I made the most of eating some of the gluten containing foods I knew I'd miss once on a gluten free diet.  But on the positive - should you be a coeliac, a lot of that food that I thought I'd never eat again (such as Weetabix) now has a gluten-free equivalent.  But I am still waiting for McVities to manufacture gluten-free Penguin bars!😊

Cristiana

Hi Christina,

 

Thank you so much for taking the time to reply with such encouraging info. I think I'm still in a bit of denial about it all. I'm 39 and all I eat is gluten. I think I'm that used to stomach pains etc. I've just thought it's a normal part of the day. Not this has been brought to my attention I'm a lot more aware of feeling bloated and having stomach pains. This is making me think i could have Coeliac but again I'm so surprised as I don't have many of the symptoms. Or maybe I do, but again I just think it's normal and not major like others must have.  It was only when I had spells of extreme pain and fatigue that I got a bit concerned, but even then it was others who forced me to get checked out (Im a typical daft male who refuses to go to the doctor normally). 

 

As for the food, it's amazing seeing all the gluten free options. I've heard in the UK we have some of the best shop breads etc. too. So that's lucky for us. We need to campaign for those penguins though haha. I've looked at options in case I do have coeliac but as you say I'm sticking to a full gluten diet for now. I've had my GP phone appointment moved forward a week so hopefully I'll have some answers in a few weeks for next steps.

 

Thank you again. I have a feeling this community is going to be a new home for me.

[cristiana]

Hi Joel

You are more than welcome.  This forum has been an absolute lifesaver to me, I've said to @Scott Adams that if we lived in the UK I think he would have been to Buckingham Palace by now to receive an award! 

Apart from this site, I would recommend you take a look at the Coeliac UK website for UK specific advice.  It would be money well spent if/when you are formally diagnosed to join Coeliac UK, as they have a really good Food and Drink Directory and also an app which will help you round the foo d aisles at Tescos, etc.   Obviously, a lot of fresh food and drink is naturally gluten free, and a lot of food in tins and packets is also gluten free although not necessary certified gluten free  - this is where this directory comes in handy.

As for the Penguins, yes, let's start a petition!  However, what I will say is Tescos do some extremely chocolatey biscuits which are absolutely delicious, and, dare I say it, probably every bit as good - the only problem is they aren't individual wrapped and melt in your hand when you eat them!

Anyway, very nice to meet you.  Keep us posted!