Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Do blood test for gluten levels tend to fluctuate?


Linny H

Recommended Posts

Linny H Rookie

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?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



cristiana Veteran
(edited)

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 by cristiana
Linny H Rookie
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 Veteran

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 Rookie
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 Veteran

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

 

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,696
    • Most Online (within 30 mins)
      7,748

    DaniLLDM
    Newest Member
    DaniLLDM
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.3k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      I question your terminology. I believe "gluten intolerance" is used as a synonym for celiac disease in most circles today whereas "gluten sensitivity" is used of NCGS (Non Celiac Gluten Sensitivity) though you still see a lot of inconsistency in how the terms are deployed.
    • cameo674
      Because of my brother’s supplement regime and my and my husband’s known gene mutations, all of the kids (26,28,30 - I should not call then kids) take PureTherapro RX Methyl Multi without iron, the MagTech magnesium supplement with 3 forms of magnesium, and D3.  I am still trying to find a Fish Oil supplement for them that comes in smaller size capsules.  I take the Metagenics lemon flavored Fish Oil Epa Dha 1000mg gels and the kids call them horse pills.  They want something 1/2 that size bur don’t have a fishy taste. 
    • growlinhard1
      Thank you for the response. I didn't think of  the things you presented but they make a ton of good sense. I'm in the USA so no stipend for a formal dx. With the added cost of gluten free food, I wish there was some program to help. I bought a loaf of gluten free bread that cost $7.99 and my usual multi grain is $2.57!  I REALLY felt the doctors taking you more seriously comment. That is a huge issue. I just had fairly extensive blood work done, none of which was testing for celiac, and everything came back normal. I felt completely dismissed by my doctor even though my symptoms remained unchanged. As a matter of fact, Celiac disease wasn't even on my regular doctors radar. I think after studying the symptoms and comparing them with my symptoms that should have been one of his top differential diagnoses. I will follow your advice and wait until after the bx to begin eating gluten free. I'm fairly certain of the diagnosis at this point because 4 days of no gluten has made a difference. I feel somewhat stronger, nowhere near as anxious or irritable, urinating every 2 hours instead of every 30 minutes to an hour and much less nausea.  If anybody has any other words of wisdom, advice, really anything, please let me know..I'm kind of alone in this.
    • knitty kitty
      Yes, some people with Celiac do react to quinoa.  I know i do.  Apparently, two different "breeds" of quinoa can stimulate the immune system. Read here... Variable activation of immune response by quinoa (Chenopodium quinoa Willd.) prolamins in celiac disease https://pubmed.ncbi.nlm.nih.gov/22760575/#:~:text=Cultivars Ayacuchana and Pasankalla stimulated,for patients with celiac disease. And some of us react to corn (maize) as well. Maize prolamins could induce a gluten-like cellular immune response in some celiac disease patients https://pubmed.ncbi.nlm.nih.gov/24152750/   P.S. @Brook G have you thought about getting a genetic test done for known Celiac genes?  
    • Brook G
      People who are Celiac don't have a gluten response to Quinoa, but some people who are gluten intolerant do.  I react to quinoa just like I do to gluten.  Freddies/Kroger came out with their own gluten-free Bread and I didn't think to read the ingredients.  I couldn't figure out where I would have gotten gluten in my diet until I read the ingredients in their bread... QUINOA
×
×
  • Create New...