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Ttg Question For You?


arkoflove

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arkoflove Apprentice

Hi there,

2 years ago my PCP diagnosed me with Celiac due to my blood test results being 'equivical' and having a good response to going off gluten. At the time I was not 100% gluten free, but was on a low carb, thus lower gluten diet. I couldn't help but wonder at the time if my tests would have been a definitive positive if I had been consuming more gluten.

I went off hgluten for a time, and when I began to feel better I ate it agin because I kept being told that blood tests aren't the gold standard and I would need an edoscopy, and I must not have it.

I was fine for a time, for 3 months plus an entire pregnancy. After that my issues started up again.

This month I went to see a GI, looking for possible IBD. No IBD was found with both a colonoscopy and MRI. A celiac blood draw was done for TTG. My value was 3. Under 5 was considered negative, 5-8 equivocal, and 8+ positive. I had been gluten free for 6 months. My doc and I discussed the need to be on gluten before the test, but we decided to run it anyway. I can't help but wonder why I am even producing TTG 6 months after stopping gluten, and if it actually indicates that it would have been positive 6 months ago?

It's hard not having a definate answer. What do you think?

-Megan


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Gemini Experienced

Hi there,

2 years ago my PCP diagnosed me with Celiac due to my blood test results being 'equivical' and having a good response to going off gluten. At the time I was not 100% gluten free, but was on a low carb, thus lower gluten diet. I couldn't help but wonder at the time if my tests would have been a definitive positive if I had been consuming more gluten.

I went off hgluten for a time, and when I began to feel better I ate it agin because I kept being told that blood tests aren't the gold standard and I would need an edoscopy, and I must not have it.

I was fine for a time, for 3 months plus an entire pregnancy. After that my issues started up again.

This month I went to see a GI, looking for possible IBD. No IBD was found with both a colonoscopy and MRI. A celiac blood draw was done for TTG. My value was 3. Under 5 was considered negative, 5-8 equivocal, and 8+ positive. I had been gluten free for 6 months. My doc and I discussed the need to be on gluten before the test, but we decided to run it anyway. I can't help but wonder why I am even producing TTG 6 months after stopping gluten, and if it actually indicates that it would have been positive 6 months ago?

It's hard not having a definate answer. What do you think?

-Megan

The tTg test will never be zero, which is why there is a range given for normal. I do not know what your original tTg numbers were when diagnosed but they must have been elevated for a doctor to diagnose you with Celiac. If you had continued to consume gluten on a regular basis, then your blood work most certainly would have been higher. It would naturally lower even on a lower gluten diet.

As far as the "Gold Standard" is concerned, that is a term penned by the AMA and you do not have to have a biopsy to prove Celiac. If your Celiac blood panel was elevated on one or more tests, you have a problem with gluten and should stop eating it. You proved this with a dietary trial so don't let the doctors put doubts in your head, unless you want to eat gluten again for more testing. You have to have active Celiac for awhile and eat a lot of gluten to produce enough damage to be seen on the scope. Are you willing to go that far to have a definitive diagnosis to convince yourself?

jenngolightly Contributor

The tTg test will never be zero, which is why there is a range given for normal.

It might be zero if you have IGA, IGG, or IGE antibody deficiencies like I do.

Gemini Experienced

It might be zero if you have IGA, IGG, or IGE antibody deficiencies like I do.

I think the original poster was referring to those who do not have IgA deficiency, which would make a biopsy or dietary trial your only option. It is possible to bring those down close to zero even if you were diagnosed by blood work and not deficient.....at least the IgA/IgG. Mine were 1 at last testing butI have been gluten-free for 6 years.

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    • JoJo0611
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