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Question About Anti-Ttg

PersianCeliac

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PersianCeliac Contributor
PersianCeliac
Posted

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.

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sa1937 Community Regular
sa1937
Posted

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 Mentor
ravenwoodglass
Posted

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 Contributor
PersianCeliac
Posted
  • Author

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 Mentor
ravenwoodglass
Posted

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 Community Regular
sa1937
Posted

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 Contributor
PersianCeliac
Posted
  • Author

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 ?

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sa1937 Community Regular
sa1937
Posted

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 Collaborator
Skylark
Posted

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 Rookie
GladGirl
Posted

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.:)

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    • trents
      Confusion about my son's results

      By trents · Posted

      Most doctors don't even order anything besides the tTG-IGA and maybe total IGA when doing blood testing for celiac disease. The EMA is the very first celiac blood antibody test that was developed and has largely been replaced by the tTG-IGA which is less expensive to run in the lab. My understanding is they both pretty much check for the same thing. The IGG tests are second tier tools that are less specific for celiac disease. It is not at all uncommon for the EMA and the tTG-IGA to disagree with one another. We frequently see this on the forum. I do not know why. Please realize that doctors typically run a number of tests when diagnosing a medical condition. If there was one test that was foolproof, there would not be a need for other tests and other testing modalities. It works that way with many or most diseases. 
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      Confusion about my son's results

      By lizzie42 · Posted

      But yes seeing all those negatives does give me a bit of doubt! I feel confident but those results give me a seed of doubt. Especially since it's a lifelong diet for him! 
    • lizzie42
      Confusion about my son's results

      By lizzie42 · Posted

      When I originally posted I hadn't talked to the pediatrician yet and didn't realize about the budosinide. Now I feel pretty confident. I was concerned that all of the tests didn't come back positive - that seemed kind of ambiguous to me. I didn't realize that was common. Do a lot of people on here have a positive tTG but negative other tests? I thought the EMA was pretty "gold standard."  And yes I do now wonder about the asthma! I hope being gluten free will improve that! 
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      @lizzie42, So, I'm confused with what you are uncertain about. Do you really have any doubt that your 5 year-old son has celiac disease? Is it because he isn't exhibiting anemia and the rash as did your daughter? The genes are certainly there and the antibody testing certainly indicates celiac. And given the fact that he was on a reduced gluten diet and on a steroidal medication (which would likely suppress immune responses) do you really have any doubt? If you can't afford the GI consult with endoscopy/biopsy, why would you consider a gluten challenge after removing the remainder of the gluten from his diet? Have you considered that his asthma and "sickness" may be tied to celiac disease?
    • lizzie42
      Confusion about my son's results

      By lizzie42 · Posted

      These are my sons results. My daughter was high positive on everything and maxed out the tests in addition to being anemic, bad rash, etc.  Yes, he has been eating mostly gluten free (not completely). He was also on a high dose of budosinide at the time of testing due to some asthma and sickness. I didn't realize that affects the results.  This test along with my daughter being so sick with it prompted the pediatrician to diagnose him. We can always do a gluten challenge in the future. We will do that with our 1 year old. We will have her eat school lunch when she goes to prek and then test after a couple months. 
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