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 levels "negative" but still 14


CeliacMommaX2

Recommended Posts

CeliacMommaX2 Enthusiast

My daughter's TTG levels were elevated for 2 years, then she hit 14 (<15 is negative), then went back up to 24.  Her EMA is negative.  I just saw the article "Can Undetectable Negative Tissue Transglutaminase IgA antibodies Predict Mucosal Healing in Treated Celiac Disease Patients?" and am all worried again about her.  Does this mean she's not healing?  We are above super strict, gluten free household, keep her in a bubble and don't know why her TTG is elevated.  Her doctor is not concerned, so I am trying not to be, but I want me little girl to be healthy!

Anyone else have any thoughts on this?  Thanks!


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

I would not fret.   Has she improved?  That is what counts.  In my research, celiac experts have published studies that indicate that the DGP is a better indication of dietary compliance.  Some say the TTG is useful.  Some say that the celiac tests should only be used for diagnostic reasons and not compliance.  The reality is that not much research has been done to check for dietary compliance.  They are focusing on a cure or better treatment (medication).  Heck, they are just trying to get more celiacs identified (80% of celiac don’t even know they have it).  

I think you are all doing a great job.  Her TTG came down and that is good news!  

GF-Cheetah Cub Contributor

I agree with cyclinglady.  

My daughter has had elevated ttg number for 3+ years now.   We are also a gluten free family.   My household went gluten free as soon as she was diagnosed.  My daughter's ttg has came down dramatically over the years, but we never quite hit the below range (We came SUPER close with one of our tests).  

Our doctor is not concerned.   She even thinks that her ttg is perhaps falsely elevated.   My daughter is doing well, she is growing.   Taller than me now.  So, I give up worrying about that ttg number a while back.   (I was rather obsessed about it for a while myself.   We worked so hard on this diet, and deserve an excellent grade for it!!)

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,834
    • Most Online (within 30 mins)
      7,748

    Katrina Leatch
    Newest Member
    Katrina Leatch
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • lookingforanswersone
      Thanks everyone. I've decided to do a gluten challenge (4 slices of bread a day for 3 months) and then do a full gluten panel of all the tests that can be done, just to rule it in or out for sure. I think otherwise psychologically it will keep bothering me 
    • Suze046
      Thanks Scott. Those articles are really interesting. I’m cutting out gluten for 6 weeks but honestly I’m not sure I even want to reintroduce it! I ate at a restaurant for the first time on Wednesday and then Thursday was really uncomfortable and had a few trips to the loo.. wonder if there was some cross contamination 🤷‍♀️ if that’s how my body reacts after not eating it for 3 weeks I’m not sure it’s worth reintroducing it and re testing for celiac! It might have been a coincidence I realise that I’m not going to feel better all of a sudden and my gut is probably still trying to heal. Thanks for your supportive message! 
    • RMJ
      Reference range 0.00 to 10.00 means that within that range is normal, so not celiac. There are other antibodies that can be present in celiac disease and they don’t all have to be positive to have celiac.  I’m sure someone else will post a link to an article describing them! Plus, if you are IgA deficient the celiac IgA tests won’t be accurate.
    • cristiana
      Great to have another UK person on the forum!   Re: blood tests, it sounds as if you are being well monitored but if you have any further concerns about blood tests or anything else, do not hesitate to start a new thread. Cristiana  
    • Lori Lavell
      Julia530 - I have the same gene structure and most of the symptoms you have experienced plus more.....I agree with you whole heartedly!! There are approximately 10 (NOT TWO) genes that can predispose a person to having Celiac Disease. I read in Pub Med that HLA DQA1:05  can result in Celiac Disease in approximately 1 in 875 people. While it is obviously more rare it is NOT BENIGN and should not go unnoticed. Go get the book "NO GRAIN, NO PAIN" and I highly suggest you read it cover to cover. It is written by a Chiropractor who quit his medical education when the VA wouldn't allow him to treat the Veterans with debilitating arthritis with a grain free diet. I have been grain free for over 10 years now.....the facts are we are being lied to! There is a form or gluten in every protein in every grain on the planet of which there are 1000 or more. Just because all they are testing for is the Gliadin in wheat is no excuse to report only partial facts. I became a Certified Function Nutrition Counselor who specializes in Celiac Disease other Autoimmune conditions. Lavell Krueger, CFNC - lavellnutrition    aol
×
×
  • Create New...