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Another Reason Why You Would Test Negative On Ttg Iga

Kamma

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Kamma Explorer
Kamma
Posted

Hey all. I got my diagnostic test back today for TTG IGA which were in the normal range. This is what I expected as I mostly present with neurological problems and according to the research coming out, AGA IGG is a better dignostic marker for that type of celiac presentation and I wasnt tested for it.

But more importantly and what I would like to share with all of you was the response of my neurologist at the findings. I think you'll find it heartwarming. Especially for those who struggle with the symptoms but the blood tests come back negative and you feel like you're fighting an uphill battle to get validated.

When he told me my IGA levels, I said, "So, that means I'm negative cause I'm in the lower end of the range." He explained that no, it doesnt, the ranges are based on a base line of only a 1000 people and who knows how many of those have undiagnosed celiac which skews the ranges. He cited a recent study where it was believed that 1 in 20 people (U.S.) might have some form of celiac but don't know it to be celiac. In a random testing of a 1000 people to establish a base line for TTG IGA, 1 in 20 of those thousand people probably have undiagnosed celiac and their levels get included in the base line.

So take heart everyone. Heres another reason why you might be negative on the TTG IGA serum test.

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researchmomma Contributor
researchmomma
Posted

Hey all. I got my diagnostic test back today for TTG IGA which were in the normal range. This is what I expected as I mostly present with neurological problems and according to the research coming out, AGA IGG is a better dignostic marker for that type of celiac presentation and I wasnt tested for it.

But more importantly and what I would like to share with all of you was the response of my neurologist at the findings. I think you'll find it heartwarming. Especially for those who struggle with the symptoms but the blood tests come back negative and you feel like you're fighting an uphill battle to get validated.

When he told me my IGA levels, I said, "So, that means I'm negative cause I'm in the lower end of the range." He explained that no, it doesnt, the ranges are based on a base line of only a 1000 people and who knows how many of those have undiagnosed celiac which skews the ranges. He cited a recent study where it was believed that 1 in 20 people (U.S.) might have some form of celiac but don't know it to be celiac. In a random testing of a 1000 people to establish a base line for TTG IGA, 1 in 20 of those thousand people probably have undiagnosed celiac and their levels get included in the base line.

So take heart everyone. Heres another reason why you might be negative on the TTG IGA serum test.

I would love to see that study! Can you get a link?

Bubba's Mom Enthusiast
Bubba's Mom
Posted

It seems like you have a very good neurologist? Many don't think of gluten/Celiac as a reason for neurological symptoms?

I'd love to know if he read some research on the blood tests, or if he just figured it out on his own as an answer to why some people test negative?

Interesting stuff!

Kamma Explorer
Kamma
Posted
  • Author

I would love to see that study! Can you get a link?

I would love to see that study too! The best I can find are numerous articles citing, "...some experts believe that up to 1 in 20 people have some type of gluten sensitivty, celic spectrum" and so on. I'll ask my neurogolist the next time I see him.

More specifically, Dr. Bob Anderson/Australia thinks the demographics are skewed as well since men are underrepresented with the a diagnosis of celiac. He believes that men are less likely to seek medical help and put down their tired issues to working too hard, getting older, bad eating habits and so on.

Until I connect up with my neurologist, I'll keep trying to see what I can find.

Kamma Explorer
Kamma
Posted
  • Author

It seems like you have a very good neurologist? Many don't think of gluten/Celiac as a reason for neurological symptoms?

I'd love to know if he read some research on the blood tests, or if he just figured it out on his own as an answer to why some people test negative?

Interesting stuff!

His sister was diagnosed as having celiac after ten years of neurological problems. When he told me that, he then look me straight in the eye and said, "...that doesn't say much for me as a neurologist does it?!". :lol: He has also taken the test and came back as a weak positive. Same score as me, he told me.

He said for him, the desire to know, learn and understand is both a personal issue but also a professional issue in that he needs to understand the neurological aspects of celiac as he could very well be dealing with that with his clients.

In terms of the blood testing, he was told about the skewed results / 1000 people when he had had his own celiac testing done and interpeted by his immunology colleague.

frieze Community Regular
frieze
Posted

this variance, is being noted in other tests as well. As has been noted here, the "norm" for TSH has been reduced. Some measures of Diabetes testing have been reduced. etc. All do to the same thought process.

nora-n Rookie
nora-n
Posted

with neruological symptoms, the ttg-6 antibodies are involved and they cross-react to a lesser degree with ttg-2 which is used for celiac testing.

DH has ttg-3 antibodies.

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IrishHeart Veteran
IrishHeart
Posted

You may find some information here? It is a collection of articles on gluten and neuro symptoms. Just FYI. Not sure if it answers the question regarding low tTg but supports the neuro-gluten connection.

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Kamma Explorer
Kamma
Posted
  • Author

with neruological symptoms, the ttg-6 antibodies are involved and they cross-react to a lesser degree with ttg-2 which is used for celiac testing.

DH has ttg-3 antibodies.

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Oh, this would be funny if it wasn't dealing with people's well being. So, it's being recognized in other testing that the 'normal levels' of a reference rage actually include a percentage of who have the disease (insert disease name here) and are undiagnosed, skewing the ranges? This is sloppy science and it drives me batty.

Yup, I've been reading up on the ttg6 & ttg3 markers the last few days. Unfortunately, tests for them are still not available.

Kamma Explorer
Kamma
Posted
  • Author

You may find some information here? It is a collection of articles on gluten and neuro symptoms. Just FYI. Not sure if it answers the question regarding low tTg but supports the neuro-gluten connection.

Open Original Shared Link

Yeah, that site is a wealth of information and it totally supports the low ttg2 connection if you have ttg6 or ttg3 antibodies.

So, to recap the deficiencies in the ttg igA tests as a diagnostic tool:

False negatives can be caused by:

IgA deficiency

Skewed ranges

Client could have ttg3 & ttg6 antibodies which the ttg2 would not pick up.

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