transglutaminase IgA levels

[Bracken2001]

I am diagnosed Celiac. In June 2017 my Transglutaminase IgA levels were 1784.2 and are now just over 300 after 2 years plus. To be normal they should be under 20. I follow a strict gluten free diet but with the odd slip up so I wonder why my numbers don’t return to normal levels. Any answers?

[Regalbirdy]

Hi Bracken2001,

I seem to remember (from the early days of my Coeliac diagnosis), that gluten antibody levels once re-activated can take months to fall back to ‘normal‘. You may not be giving yours the chance to do that.

I suspect the issue maybe those odd slip-ups - it sounds like there could be a just a few to many going on; based on what you have written. You may have to review the food you are eating at home (including the possibility of cross contamination from double dipping into spreads and from cooking appliances etc); and also re-assess the risks you are willing to take with your food when eating out, before you see any improvement.

Gluten accidents do happen occasionally - that’s life. However if you are managing your diet well, then I would argue that they should be happening no more than about once a year at most (And this is possible –as I’ve been ok for around 5 years now without incident - although I admit the first couple of years were more of a learning curve…!).

As you know, it can be problematic to be a coeliac when eating out (wherever you are in the world...); so please be very careful who you trust. If you can’t be sure that you’re going to be safe eating at a particular restaurant, then reconsider giving them your custom. Your long-term health is much more important than that one meal (or that restaurant)!

Best wishes,

R.B.

[Bracken2001 in reply to Regalbirdy]

Thanks

[Cooper27]

When you say "slip up" how often and how much are we talking?

I also agree with regalbirdy that you need to look at sources of cross contamination. Do you use a new toaster? Did you replace baking trays & utensils that could be harbouring gluten?

[Bracken2001 in reply to Cooper27]

Maybe once or twice a year I could have a slip up. I must admit I haven’t replaced the toaster or kitchen utensils though I am the only user of the toaster and anything cooked on the baking trays is gluten free as my husband eats the same food as me. I’m confident it’s not cross contamination from home, I appreciate your comments.

I’m wondering if there is anyone else in the Coeliac community who has been the same with these levels. My understanding is that this is is normal for maybe 5% of Coeliac especially if you are diagnosed in older age as I was, I am 68 now.

[Cooper27 in reply to Bracken2001]

I would definitely replace your toaster - most coeliac's can't use a toaster that once had gluten in it, even if it was years ago.

Your slip ups will cause antibodies to be elevated for a little while too, so you do need to be more careful with that too.

How careful are you when eating out? Do you ask the restaurants about preparation & cross contamination? A lot of places offer gluten free menus that aren't prepared in a safe way (so technically aren't gluten free).

There are some whose antibodies never normalise, despite a strictly gluten free diet, and in those cases it can be quite serious (leading to things like gluten ataxia). You really have to follow a very strict gluten free diet to rule this out, as it's otherwise quite serious.

[Bracken2001 in reply to Cooper27]

Thanks for your comments

[HowNowWhatNow]

Hi Bracken

Hopefully the answers above tell you what you need to know about reducing these numbers.

I have two follow-up questions;

1. To your / anyone else’s knowledge is gluten the only thing that can make your Transglut’e IgA levels rise?

I’m interested in how the antibodies work / react - are they just triggered / converted by gluten and that alone? And if so, how?

My kids are both IgA deficient and I’m interested in how the process works in someone with good IgA levels.

2. Are you feeling better than before you went gluten-free? If so or if not, then how so or not? And if you don’t mind my asking - how old are you / long did you live with the symptoms?

[Bracken2001]

I’ve no idea if other food can raise these levels but presume it is only gluten that does. I feel absolutely fine since being on a gluten free diet with no problems unless I accidentally eat something or something has been contaminated and this is usually only when eating out. It’s just these numbers that seem to be the issue and the fact that they haven’t returned to below 20!

[lovejesus7]

I am so sorry that they can not find any answers.

[Bracken2001]

Thank you. I think it will mean an endoscopy to see what's going on but I am absolutely fine, no other symptoms at all.

[cdworried]

Hi Bracken - my daughter was diagnosed over 4 years ago (aged 7) and was over 3000. Despite following a strict gluten free diet she is still testing as positive with levels at 42 on her last test. She has never had a test result below 40. The doctors don't know why this could be. She is going for an endoscopy next week to see if she still has villi damage. Not sure if connected but her older sister has Crohn's disease. Good luck with trying to find out why you are still showing as positive

[Bracken2001]

Thank you. It is heartening to know I’m not alone. Is she generally ok.

[cdworried]

She is underweight and complains of stomach aches alot. It's very perplexing as to why she still shows positive in her blood tests. Hopefully next weeks endoscopy will show if she still has damage. Wishing you well with your concerns

[Bracken2001]

Good luck with next week, I'd be interested to know the outcome.