Question About Anti-Ttg

[PersianCeliac]

Hi everyone, my mother and aunt were recently diagnosed with celiac. My mother has no symptoms except anemia. My mother's tTG was >800 when diagnosed and biopsy showed subtotal atrophy. I was wondering did anyone else have such a high number ? I am afraid that since her numbers are so high it will be difficult for her to bring it down or normalize it. My aunt's number was >500 but done at a different lab so they stop counting at 500 not 800.

[sa1937]

Welcome to the forum! Different labs use difference reference ranges. My celiac panel was done by Quest and my tTG was >100 with positive being >8. So how far over 100 that was is an unknown. 398? 500? 1,000? No clue.

[ravenwoodglass]

Her numbers should come down after she has been on the diet for a bit. Many doctors will recheck levels at 6 months to a year gluten-free. By the way since your Mom was diagnosed that means you should also be tested along with the rest of your family if you haven't been already. Read as much as you can here to help your Mom and keep her safe and ask any other questions you need to.

[PersianCeliac]

Thank you for your responses. As soon as I found out its hereditary, I got tested. My results are confusing my ttg and EmA are both negative also anti-gliadin IGg negative only anti-gliadin IgA is positive and that is not specific to celiac. I guess maybe I have some allergy to gluten but not celiac yet. Sylvia I was wondering did your number come down for ttg ? And if yes how long did it take ?

[ravenwoodglass]

Thank you for your responses. As soon as I found out its hereditary, I got tested. My results are confusing my ttg and EmA are both negative also anti-gliadin IGg negative only anti-gliadin IgA is positive and that is not specific to celiac. I guess maybe I have some allergy to gluten but not celiac yet. Sylvia I was wondering did your number come down for ttg ? And if yes how long did it take ?

It is my understanding that the IgA is quite specific to celiac. IMHO with your family history you should go gluten free and then retest and see if the IgA levels go down.

[sa1937]

Thank you for your responses. As soon as I found out its hereditary, I got tested. My results are confusing my ttg and EmA are both negative also anti-gliadin IGg negative only anti-gliadin IgA is positive and that is not specific to celiac. I guess maybe I have some allergy to gluten but not celiac yet. Sylvia I was wondering did your number come down for ttg ? And if yes how long did it take ?

Knowing what I know now, I would have asked to be retested at 6 months and a year. For me I think I was 9 months or so into the diet before I was retested.

While my EMA was positive at diagnosis, it was negative when retested. My tTG had gone from >100 to 10, which according to Quest was still positive (>8 is positive). Since I was compliant to the diet, I was totally bummed when I met with my GI in April a year ago. He was not concerned because the numbers had fallen dramatically and we had no idea how high they really were as Quest only tested to 100. Right now I have a lab slip to test the tTG and EMA again and have a follow-up appointment on June 7. Now to get to the lab...

If my tTG is still positive, I plan to ask for more testing as I know other AI diseases can also affect tTG levels.

[PersianCeliac]

Knowing what I know now, I would have asked to be retested at 6 months and a year. For me I think I was 9 months or so into the diet before I was retested.

While my EMA was positive at diagnosis, it was negative when retested. My tTG had gone from >100 to 10, which according to Quest was still positive (>8 is positive). Since I was compliant to the diet, I was totally bummed when I met with my GI in April a year ago. He was not concerned because the numbers had fallen dramatically and we had no idea how high they really were as Quest only tested to 100. Right now I have a lab slip to test the tTG and EMA again and have a follow-up appointment on June 7. Now to get to the lab...

If my tTG is still positive, I plan to ask for more testing as I know other AI diseases can also affect tTG levels.

Sylvia I hope your tests turn out normal, it is great that u responded so well. I was wondering what was the stage of your celiac at diagnosis ? Mild, subtotal or total atrophy ?

[sa1937]

Sylvia I hope your tests turn out normal, it is great that u responded so well. I was wondering what was the stage of your celiac at diagnosis ? Mild, subtotal or total atrophy ?

Thanks, I do, too! My biopsy report said I had villous atrophy but it didn't define it according to the Marsh scale, which I've seen referred to on here. So I really don't know.

[Skylark]

It is my understanding that the IgA is quite specific to celiac. IMHO with your family history you should go gluten free and then retest and see if the IgA levels go down.

I have a different understanding? Usually these days gliadin means deamidated gliadin and I'm pretty sure the IgG is more specific than IgA with the deamidated? The old anti-gliadin IgA was not sensitive at all but pretty specific but I don't know that anyone runs it anymore. I think we did have a couple people with deamidated IgA and positive biopsies.

Whatever it is, having a positive on any of the gliadin style blood tests means you will probably feel better off gluten!

[GladGirl]

My bloodwork was done through the office of a hemotologist and his lab. My IGA was positive big time! Because of my liver biopsy and the bloodwork they did not feel it necessary at this time for me to have another invasive procedure. My liver enzymes are hopefully showing diminished in this next bloodwork. I am however, going to seek a gastro Dr. I have heard of who specializes in celiac disease. I know the tests for my vitamin/mineral status is necessary at this point, so will be taking that step next.

The bloodwork as I understand it for testing is not always "conclusive", so it seems that the genetic testing is another way to go. I am thinking in this whole scenario, that one day they will probably "type" this disease as they have so many others. With all the varying symptomology out there, it would seem that as more clinical studies are performed, that may be the way this specialty will go. Could be helpful for so many out there. Just a thought on my part.