Some Of The Test Results Are Back.

[Roda]

Well, at least for now I feel that I can give the celiac a rest for my oldest ds and we will continue to monitor him. I really think that everything is related to not feeling well with his sesonal allergies and his susceptibility to strep. Here are his results:

Gliadin IgA AB-- 4 unit (19 units or less ...Negative)

Gliadin IgG AB-- 1 unit (19 units or less ...Negative)

Tissue Transglutaminase Ab IgA--4 (values greater than 19 positive)

He has had a total IgA last year and is not deficient. I am still waiting on the reticulin IgA Autoantibodies.

[nora-n]

Yes, but it is known that at least 20% of biopsy proven celiacs have negative tests...

I know af a little girl (from another forum) who only had the endomysium antibody test positive.

How old is your child?

Often tests are unreliable with children under three because they do not make enough antibodies, but that was why the total IgA was done.

nora

[Roda]

Yes, but it is known that at least 20% of biopsy proven celiacs have negative tests...

I know af a little girl (from another forum) who only had the endomysium antibody test positive.

How old is your child?

Often tests are unreliable with children under three because they do not make enough antibodies, but that was why the total IgA was done.

nora

He is just over 8 1/2 years old. He isn't having any symptoms to indicate a biopsy. He did not have the EMA done because the reference lab would not do it unless the tTG was positive. I had another post about that asking the importance of having it too with the other tests, but noone here would reply. So I did the labs where my insurance would pay. I didn't want the out of pocket expense of out of network. It would have been nice to get some other input though. Oh well. I do the best I can. I don't think this is the issue right now. It was easy to think so since I'm diagnosed, but I can't blame everything on celiac. I have had a pretty good instinct with both of my boys thus far that has served me well and I don't think this is it at this time. Thats not to say that I won't be keeping an eye on things.(I had him retested to include all the tests this time) Thanks for the reply.

[lizard00]

Out of curiousity, are you having him tested every year?

I had my son tested last year around this time, and everything came back negative. I believe his tTG was 0. I understand how you feel, it would be easy to blame everything on celiac since I have it. I feel like I walk this line that borders awareness and paranoia... it's crazy.

I'll be seeing his pediatrician in about two weeks for my daughter's one month checkup, and I am going to ask him what his opinion is on the frequency of having him tested. Then I might ask my GI when I see him next...

[Roda]

Out of curiousity, are you having him tested every year?

I had my son tested last year around this time, and everything came back negative. I believe his tTG was 0. I understand how you feel, it would be easy to blame everything on celiac since I have it. I feel like I walk this line that borders awareness and paranoia... it's crazy.

I'll be seeing his pediatrician in about two weeks for my daughter's one month checkup, and I am going to ask him what his opinion is on the frequency of having him tested. Then I might ask my GI when I see him next...

I don't know how frequently I should have him screened. We were having some isolated behavior problems and thought that this could be it. He only had a total IgA and tTG last Nov. so I asked his allergist to run all of the tests this time to cover all the bases. His tTG last Nov was 2. I can completly relate to the awareness bordering on paranoia. Not only do I have celiac, but I work in a hospital too and it can be quite bothersome to know things. Sometimes I think ignorance would be bliss. No not really, if that was the case, I would still probably be undiagnosed. I guess I just want to make sure if he is going to develop something I want to catch it early and not have him suffer. I have a 4 almost 5 year old too who had the same screening last year as my oldest ds. I have not had him retested yet and will probably wait awhile. My oldest ds's seasonal allergies are really bad this year and I really believe this is the problem. We had a two year period when they were really under control and he was feeling well and not sick. I guess the honeymoon is over. We'll get back on track though.

[nora-n]

Hi, sorry, we are not all online here every day...

That case with the little girl with only the endomysium test positive, was on another forum (delphi) so you could get more answers with important questions if you post them several places....maybe someone here in the children folder could have related and answered that it is not uncommon to only have one of the tests positive.

Still, about 20% of celiacs have negative blood tests.

There is another place you can use to test for early gluten issues, it is enterolab. They have a very sensitive IgA ttg and antigliadin stool test, that is where the antibodies show up long before the blood. But they pick it up so early that they can only call it gluten sensitivity, not celiac.

In case you wanted to prusue if gluten is an issue with the one with behaviour issues. They also test for antibodies against milk.

The gene tests give some kind of risk assessment.

The conventional celiac tests have a high cutoff, and this is intentional, so that they only pick up kinda severe celiac damage. They try to make them correlate with biopsy results showing severe villous damage.

nora