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

Confused, Frustrated, Upset And Tired Of High Ttg Levels

Nannu

Recommended Posts

Nannu Rookie
Nannu
Posted
  • Author

Hi All,

It would be nice to get some views on this entire testing episode. Is my doctor's belief alright? I am still thinking why the ttg levels have not moved at all from 296. They could have shown little change at least. Somehow, i am not getting my belief in place that we will be able to see a fall in ttg after 6 months also. As far as i know, levels won't suddenly fall to 0 in one shot and the fall is gradual. So, will it take us 3 yrs to see normal levels?

Thanks again

Nannu

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

Celiac.com Sponsor (A8-M):


Skylark Collaborator
Skylark
Posted

The sensitivity of AGA is very poor, anywhere from 33%-60% depending on the study. Sorry, but your doctor is correct and you can't really interpret your daughter's negative AGA. Hopefully her TTG will fall some in the next six months.

Nannu Rookie
Nannu
Posted
  • Author

The sensitivity of AGA is very poor, anywhere from 33%-60% depending on the study. Sorry, but your doctor is correct and you can't really interpret your daughter's negative AGA. Hopefully her TTG will fall some in the next six months.

Skylark,

Thanks for the reply. This is what lab report mentions about the test:

Sensitivity - 90-100% for children

Specificity - 86-100% for children

Other than this, we were in touch with the senior pathologist in the lab who was aware of her ttg and EMA results. So, on his own he did a repeat TTG and repeat AGA to give us sure reports. He also remarked that gluten issue is ruled out and we may need to investigate further.

I really don't know whether all that repeat effort would give a better idea may be your thoughts can throw some light.

Thanks again

Nannu

Skylark Collaborator
Skylark
Posted

Nannu, is this the old anti-gliadin antibody test or the newer deamidated gliadin peptide (DGP) test? Those numbers sound more like DGP. I've never seen anyone claim 90% sensitivity for the old AGA test.

Nannu Rookie
Nannu
Posted
  • Author

Skylark,

For adults the report mentions as follows:

Sensitivity - 31-100% for adults

Specificity - 85-100% for adults

I feel it is the anti gliadin test only.

Skylark Collaborator
Skylark
Posted

I don't think the sensitivity is as high as they claim for kids. The best I'm seeing is 83% and they had to adjust the assay cutoff in the study, plus it was only under age 5. More typically it's 50%-70% for older kids, depending on the study. AGA is just not a very good test.

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

I don't know that it changes anything though. The point of the gluten-free diet is for her to grow and be well-nourished. It sounds like she is doing fine in that regard.

Nannu Rookie
Nannu
Posted
  • Author

I don't think the sensitivity is as high as they claim for kids. The best I'm seeing is 83% and they had to adjust the assay cutoff in the study, plus it was only under age 5. More typically it's 50%-70% for older kids, depending on the study. AGA is just not a very good test.

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

I don't know that it changes anything though. The point of the gluten-free diet is for her to grow and be well-nourished. It sounds like she is doing fine in that regard.

Yes Skylark,

Thanks for those links. I checked all of them. I am amazed about the knowledge and perspective that you have in this area.

Today we went to see Hematologist also. And he suggested that thal minor has nothing to do with high ttg levels. i guess i don't have a choice but to just wait and watch when exactly levels start showing a drop. One thing that i am sure of at this point of time is that i am leaving no voids in complying to GFD. Hopefully, it all pays off one day. As parents, our worry remains that till the time her levels are high, she is at a risk of developing some other complication and thats what scares us a lot. Anyways, Thanks a ton for your help and valuable suggestions. You have been a great help and support.

Nannu

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

Celiac.com Sponsor (A8-M):


Archived

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

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


  • Member Statistics

    • Total Members
      130,050
    • Most Online (within 30 mins)
      7,748
    NicRey
    Newest Member
    NicRey
    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

    • Scott Adams
      Pepsid alternative

      By Scott Adams · Posted

      It seems crazy to me that even when you call a manufacturer they can't, in this day and age, answer the simple question about what exactly is in their product!!
    • Stephanie Wakeman
      Is it common to develop a wheat allergy in addition to Celiac Disease?

      By Stephanie Wakeman · Posted

      Thank you so much for your response! It's been a challenging journey with this condition! 
    • milana
      Pepsid alternative

      By milana · Posted

      Thank you very much for your response. Since I got this advice I called Pepsid manufacturer and they could not give a definite answer. Basically,  there is no final testing and they do not guarantee anything. So I went and got farmotidine from Wagmans that was marked gluten-free and also our pediatrician gave us a prescription for farmotidine that was also gluten-free. So there are other options there thankfully. In case someone will come across of this dilemma.
    • Diana Swales
      Recently qualified Nutritionist looking for support

      By Diana Swales · Posted

      A nutritionist typically focuses on general wellness, lifestyle guidance, and preventative health. A dietician allowed to provide medical nutrition therapy. When i was diagnosed there was zero support and few dieticians and Dr understood celiac disease.  I typically guide a newly diagnosed celiac to a whole food diet to easily transition to the gluten free lifestyle  
    • Scott Adams
      gluten-free self diagnosed journey so far as well as what triggers. Eye crying like peeling onions?

      By Scott Adams · Posted

      Your gluten-free journey sounds like a lot of trial and error—especially working in a deli where gluten exposure is constant! The eye-watering issue could be an airborne gluten sensitivity (like flour dust irritating your eyes) or even a mild wheat allergy, since you’re around it daily. A daily antihistamine (like Claritin or Zyrtec) might help if it’s allergy-related, but avoiding airborne gluten as much as possible (masking, washing hands/face often) is key. It’s great you’re tracking triggers—high-fiber foods and certain gluten-free substitutes (like those tortillas or PB pretzels) can sometimes cause similar symptoms due to additives or digestive adjustments. For travel, pack safe snacks (protein bars, nuts) and research gluten-free translation cards for Aruba. On flights, opt for packaged gluten-free meals or eat beforehand. Many gluten-free foods and baking mixes contain xanthan gum or other gums like guar gum. Although they are both gluten-free, they may cause IBS-type issues in some people with celiac disease or gluten sensitivity:   You’re doing all the right prep—trust your research and enjoy your trips! 
×
×
  • Create New...