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Confused, Frustrated, Upset And Tired Of High Ttg Levels

Nannu

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Nannu Rookie
Nannu
Posted
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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

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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.

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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

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