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

TTG lebe 406, Antibody positive but biopsy looks ok?


LouLou24

Recommended Posts

LouLou24 Rookie

Awaiting a consultation with my gastro following duodenal biopsies but just looking for thoughts on my situation. TTG in blood is 406, GP told me anything above 20 could be coeliac. Antibody positive. Usual digestive issues also however vitamin/iron etc in blood is good. However I had the endoscopy and they said they could see the Villi in the small gut are in good condition and to remain on normal diet until a follow up. Am I coeliac?? I would have rathered a straight yes or no 😭


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



Celiac.com Sponsor (A8-M):



GFinDC Veteran

They will probably give you an answer at the follow up appointment.  Antibodies are one part of a celiac diagnosis but the endoscopy is important also.  Visual endoscopy views are not always dependable.  Some damage is only visible under microscopy.   But my guess is that 9 out 10 times or more positive antibodies are an indicator of celiac disease.  Damage to the gut is not always the same, it can vary widely.  So yours might be minor now but major in a year.

Some people get antibody damage to the skin or joints or nerves versus gut.  So there are other areas that may be affected.  You should keep eating at least some gluten every day until the medical process is complete.  Sometimes labs will lose results or damage samples requiring new test samples.  So it's better to stay on gluten until you are sure they have final answers.  Going off gluten and then  going back on gluten for further testing can be pretty rough.

Scott Adams Grand Master

If you are in the UK, they are not diagnosing celiac disease in most cases by blood tests alone, and your results are sky high. Do you have the full blood test results that you can share? This article may be helpful to you:

 

LouLou24 Rookie
3 hours ago, Scott Adams said:

If you are in the UK, they are not diagnosing celiac disease in most cases by blood tests alone, and your results are sky high. Do you have the full blood test results that you can share? This article may be helpful to you:

 

Thank you so much for your informative reply.

I'm in Ireland, seems we're a step behind the UK in terms of relying on Endoscopy to 'complete' the diagnosis. Its disappointing. Especially given that the endoscopy didn't show anything, it didn't give any supporting evidence to put alongside the blood results. Makes me feel as though this was just an unnecessary, gruelling, costly procedure.

I dont have the full list of bloods, all I remember is TTG was level 406 & antibody positive. Everything else in the full blood count was normal, b12, ferratin, folate etc etc. I guess this is conducive with the villi being stable, meaning my absorption is currently unaffected. 

I expect from your reply that I'll be receiving a coeliac diagnosis in the coming weeks (which could've been done without putting me through an endoscopy:( ) 

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
      126,299
    • Most Online (within 30 mins)
      7,748

    Lozzaka20
    Newest Member
    Lozzaka20
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.3k

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)


  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Raquel2021
      Yes stress can .make the pain worse. That being said it is taking years for my body to heal. I am not able to eat out as 98 % of restaurants do not know how to cook for celiacs.  I only eat out on special occasions. Any time I eat gluten I feel there is a tourch going through my digestive system specifically in the area you have mentioned.  Like where the deudenal is . I am very sensitive to cross contamination so any small amount of gluten makes me sick.
    • trents
      @Ems10, celiac diagnosis normally involves two steps. The first one is serum antibody testing which you may have already have had done and are waiting on the results. The second step involves and endoscopy (aka, gastroscopy) with biopsy of the small bowel lining. This second step is typically ordered if one or more antibody tests were positive, is a confirmation of the serum antibody testing and is considered the gold standard diagnostic test for celiac disease. Now hear this, you should not be eating gluten free weeks or months in advance of either kind of testing. Prematurely going on a gluten free diet can and will sabotage the results of the endoscopy/biopsy should you get a referral to a GI doc who would want to do that. Eliminating gluten from the diet causes causes inflammation to subside which allows the small bowel ling to heal such that the damage they would be looking for is no longer there.
    • Scott Adams
      Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.  
    • Scott Adams
      It might make sense for you to find out if they've run a celiac disease test on you, and if not, consider planning for it.
    • Ems10
      Thanks for your reply! I’m really not too sure, the doctor just took a few tubes of blood & that’s all I know 🥹
×
×
  • Create New...