Do blood test for gluten levels tend to fluctuate?

[Linny H]

My first test was great and now my gluten number is up again along with my liver enzymes. I haven't changed my diet at all. Confused!

Just now, Linny H said:

My first test was great and now my gluten number is up again along with my liver enzymes. I haven't changed my diet at all. Confused!

My question for those of you who have had Celiac for years:  do these numbers tend to fluctuate?

[cristiana]

Hello Linny 

I wonder if you could post your numbers - it would be really helpful to know what your TTG readings were before and now, if you have them?  Also, which liver enzymes have gone up?

Without knowingly changing your diet, one explanation could be that the ingredients of something you are eating that was previously gluten free may now include gluten.  Have you been checking ingredients lists?  This has happened to me recently - I was enjoying some salted caramel chocolates (not v. healthy!) and felt quite unwell after eating a few.  I then looked at the ingredients and  the "may contain gluten" now appears on the packet.  That warning was not there before. I suspect the product is now being manufactured on a shared line.

Or perhaps you are eating out somewhere regularly that you could rely on before, but they have a new chef who doesn't understand the intricacies of gluten-free food preparation perhaps?

Just a couple of thoughts.

Or how about supplements/medication?  A few years ago I started taking Floradix (contains gluten) instead of Floravital (gluten-free) as an iron supplement.  The packaging is almost identical and it took me some time to realise my mistake.  It really did impact my health and my numbers were very high as a result.

Cristiana

 

Edited December 16, 2021 by cristiana

[Linny H]

18 hours ago, cristiana said:

Hello Linny 

I wonder if you could post your numbers - it would be really helpful to know what your TTG readings were before and now, if you have them?  Also, which liver enzymes have gone up?

Without knowingly changing your diet, one explanation could be that the ingredients of something you are eating that was previously gluten free may now include gluten.  Have you been checking ingredients lists?  This has happened to me recently - I was enjoying some salted caramel chocolates (not v. healthy!) and felt quite unwell after eating a few.  I then looked at the ingredients and  the "may contain gluten" now appears on the packet.  That warning was not there before. I suspect the product is now being manufactured on a shared line.

Or perhaps you are eating out somewhere regularly that you could rely on before, but they have a new chef who doesn't understand the intricacies of gluten-free food preparation perhaps?

Just a couple of thoughts.

Or how about supplements/medication?  A few years ago I started taking Floradix (contains gluten) instead of Floravital (gluten-free) as an iron supplement.  The packaging is almost identical and it took me some time to realise my mistake.  It really did impact my health and my numbers were very high as a result.

Cristiana

 

Cristiana, Thanks so much for your suggestions. I was diagnosed in May after years of high liver enzyme numbers (ast & alt).  My TTG readings were >100 and an endoscopy followed that. August numbers for TTG were <2 and my liver enzymes were back in the normal range. December blood work showed TTG of 5 and elevated liver enzymes again. I haven't done anything different with my diet, however I did eat "gluten free" items at Olive Garden on 2 occasions after the good report in August. I guess that's out now. I recently added gluten free oatmeal back to my diet and I'm thinking the cinnamon I put in may be a source of gluten. I'm planning to replace that today. Other than that, I'm puzzled. I do not have the overt gut symptoms, but do have outbreaks of DH. I was just puzzled by the elevation of TTG and the liver enzymes. That's what concerns me most. 

Thanks again for listening and advising.

[cristiana]

Hello Linny

Well, I guess the good news is that your TTG is still at very low levels, compared with your diagnosis.

I've struggled with higher levels than I'd have liked but my consultant has never been particularly concerned.  He says to me that even if I were to just drink water and eat rice all year round I'd probably have slightly elevated levels as a coeliac.  I'm not sure what other contributors to this forum make of that, but that's been his take and I guess he's seen a lot of coeliacs in his time!

As regards the liver enzymes, is it still the ast and alt levels that are raised again and are other levels affected too?  I've had wonky liver enzyme tests in the past but my weird reading has always been my immunglobulin levels, which tend to fluctuate outside normal levels.  I gather this can be an autoimmune thing.

Anyway, I'm hoping others will chime in about the ast and alt levels as I've not had that particular issue.

Cristiana

 

[Linny H]

24 minutes ago, cristiana said:

Hello Linny

Well, I guess the good news is that your TTG is still at very low levels, compared with your diagnosis.

I've struggled with higher levels than I'd have liked but my consultant has never been particularly concerned.  He says to me that even if I were to just drink water and eat rice all year round I'd probably have slightly elevated levels as a coeliac.  I'm not sure what other contributors to this forum make of that, but that's been his take and I guess he's seen a lot of coeliacs in his time!

As regards the liver enzymes, is it still the ast and alt levels that are raised again and are other levels affected too?  I've had wonky liver enzyme tests in the past but my weird reading has always been my immunglobulin levels, which tend to fluctuate outside normal levels.  I gather this can be an autoimmune thing.

Anyway, I'm hoping others will chime in about the ast and alt levels as I've not had that particular issue.

Cristiana

 

Thanks for the encouraging word about your doctor's opinion. Yes, it is my ast and alt that are elevated again. No problem with any other liver related numbers Thanks again for your responses.

[cristiana]

Is the elevation very marked for the ast and alt ranges - can you provide the numbers?  Sorry... I'm making you work hard here!