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

Conflicting test results. Positive blood test, serology negative

Vishakha
 Share

Recommended Posts

Vishakha Newbie
Vishakha
Posted

Hello everyone, I have a conflicting situation and could not find a similar post. Any advice or experience appreciated.

I had stomach issues (acid reflux and wind) back in nov 2018 to the point where it was giving me issues in sleeping. I got tested for celiac (ttg) and it came out positive (>128). I am in UK and the scale they used is max 6.

I underwent a series of tests since then. My HLA DQ is positive. However my biopsy was negative and it was assumed that it could be early onset. I had no major GI symptoms or any other celiac symptoms so it was still inconclusive and I was not advised to go gluten-free. The testing went on pause because of my pregnancy and covid in 2020-22. I did a repeat of TTG test and weirdly it came 11 in Oct 2020, >128 in Feb-2021 again and 6!!!!! in March 2022 which was the last ttg test.

I underwent a repeat biopsy in Feb 2023 which was again negative. However, this time I was advised to go gluten-free (while not being overly strict on cross contamination) given the fact that my TTG has been occasionally high. I am gluten-free since a month. I had no major GI symptoms as such anyway and I do not notice any other improvement in my body after going gluten-free. I get tired quite easily and have muscle pains and leg pains but I am not feeling a change in that even after going gluten-free. That is a separate issue and exercise and physiotherapy helps me with that.

Has anyone seen TTG levels fluctuating like this for them? My last test in 2022 was even normal and I am not sure what to make of that really.

I am still in consultation with gastro but would appreciate any kid of advice if anyone has?

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

Celiac.com Sponsor (A8-M):


trents Grand Master
trents
Posted
(edited)

Welcome to the forum, Vishakha!

That is indeed an unusual trend. I cannot remember having seen the situation you describe where the tTG-IGA was that high and then returning to normal without the intervention of a gluten free diet. My only thought would be that somehow your pregnancy reset your immune system so that you are in celiac remission. But I would certainly keep an eye out for the possible development of celiac disease in earnest. We hear about cases of remission occasionally on the forum but they usually aren't permanent. And it would probably be a good idea to have celiac antibody blood testing done every couple of years.

Edited by trents
Vishakha Newbie
Vishakha
Posted
  • Author
13 minutes ago, trents said:

Welcome to the forum, Vishakha!

That is indeed an unusual trend. I cannot remember having seen the situation you describe where the tTG-IGA was that high and then returning to normal without the intervention of a gluten free diet. My only thought would be that somehow your pregnancy reset your immune system so that you are in celiac remission. But I would certainly keep an eye out for the possible development of celiac disease in earnest. We hear about cases of remission occasionally on the forum but they usually aren't permanent. And it would probably be a good idea to have celiac antibody blood testing done every couple of years.

I delivered in June 2020 and had 3 tests after that. So not sure if its related but I'm so confused. Will see what the gastro suggests as there has been no change for me even after 4-5 weeks of gluten-free diet. 

trents Grand Master
trents
Posted

Just be aware that having been on the gluten-free diet now for over a month you cannot be tested and expect valid results. For valid testing you would need to be eating regular amounts of gluten and that is true for both the blood antibody tests and for the endoscopy/biopsy. If you want additional testing in the future you would need to go back to eating gluten.

Vishakha Newbie
Vishakha
Posted
  • Author
4 minutes ago, trents said:

Just be aware that having been on the gluten-free diet now for over a month you cannot be tested and expect valid results. For valid testing you would need to be eating regular amounts of gluten and that is true for both the blood antibody tests and for the endoscopy/biopsy. If you want additional testing in the future you would need to go back to eating gluten.

Yes I'm aware, I'll wait for doctor's view on this. That being said, I've a long list prepared of foods to eat if I go back to gluten diet for the tests. 🤣🤣

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
 Share
Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,877
    • Most Online (within 30 mins)
      7,748
    SamEsplanade
    Newest Member
    SamEsplanade
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Bebee
      Testing for celiac

      By Bebee · Posted

      I have been diagnosed with Microscopic Colitis (LC) for quite a few years, so I have been gluten-free and DF.  I would like to get tested for Celiac Disease because of the possibility of cross contamination and colon cancer.  And if you were hospitalized and didn't have a celiac diagnosis you could not get gluten-free food, I don't know if that is true or not.  Also because there is chance of colon cancer so I want to know if I have Celiac Disease and need to be on very restrictive diet.  The only testing I did was a sigmoid scope and Enter Lab but no gene testing.  I know I can go back to eating gluten for a few months, but I would worry you would have to stay home for the few months while getting gluten.  What other options do I have?  Should I do the gene testing?  Maybe through Entero Lab?  Any other tests?  How important is it to have Celiac diagnosed? Thank you! Barb
    • trents
      Hidden Gluten in distilled vinegar

      By trents · Posted

      Take it easy! I was just prompting you for some clarification.  In the distillation process, the liquid is boiled and the vapor descends up a tube and condenses into another container as it cools. What people are saying is that the gluten molecules are too large and heavy to travel up with the vapor and so get left behind in the original liquid solution. Therefore, the condensate should be free of gluten, no matter if there was gluten in the original solution. The explanation contained in the second sentence I quoted from your post would not seem to square with the physics of the distillation process. Unless, that is, I misunderstood what you were trying to explain.
    • Mynx
      Hidden Gluten in distilled vinegar

      By Mynx · Posted

      No they do not contradict each other. Just like frying oil can be cross contaminated even though the oil doesn't contain the luten protein. The same is the same for a distilled vinegar or spirit which originally came from a gluten source. Just because you don't understand, doesn't mean you can tell me that my sentences contradict each other. Do you have a PhD in biochemistry or friends that do and access to a lab?  If not, saying you don't understand is one thing anything else can be dangerous to others. 
    • Mynx
      Hidden Gluten in distilled vinegar

      By Mynx · Posted

      The reason that it triggers your dermatitis herpetiformis but not your celiac disease is because you aren't completely intolerant to gluten. The celiac and dermatitis herpetiformis genes are both on the same chronometer. Dermatitis herpetoformus reacts to gluten even if there's a small amount of cross contamination while celiac gene may be able to tolerate a some gluten or cross contamination. It just depends on the sensitivity of the gene. 
    • trents
      Hidden Gluten in distilled vinegar

      By trents · Posted

      @Mynx, you say, "The reason this is believed is because the gluten protein molecule is too big to pass through the distillation process. Unfortunately, the liquid ie vinegar is cross contaminated because the gluten protein had been in the liquid prior to distillation process." I guess I misunderstand what you are trying to say but the statements in those two sentences seem to contradict one another.
×
×
  • Create New...