Head to the GI on monday...

[Kaylee's Mommy]

I've been trying to do a bit of research on Kaylee's test results and symptoms.. she does have some symptoms, but they can easily be written off as something else..

When I was looking for test results I found that a 27 is considered a week positive (this is what Kaylee was and a 30 is positive..)... so my question is this.. if she has a week positive, she obviously has the antibodies so can we expect that this number will continue to rise eventually leading to the positive range.. the thing that I'm worried about is this test was done a week/ish after she was out of the hospital... she wasn't eating much, if not anything with gluten in it for a long time.. she had been sick for a few weeks.. so I'm wondering if this test would have been higher if she was feeling ok..

I hate waiting for dr. appointments.. I wish they could have gotton us in weeks ago.. I'm nervous about the dr. appointment.. for some reason I have a feeling that they are going to brush it off and I'll be waisting my time.. with a week positive should they be doing a biopsy? I've heard that the test and biopsies don't necessarily work with younger kids because they aren't producing the antibody as much? how young are they talking..

obviously her endo is concerned about it otherwise she wouldn't have called me and said we need to go see the GI.. all her test before this one were in the negative range...

or could her being sick, raised the level? but that doesn't make sense really.. does it?

[WestinsMom]

My guess, and it is only a guess, is that she could have had a higher number if she had been eating normallly.

I would say they should retest her if you are worried and if it is still only around 27 they will do nothing for now. If it is much higher, then I would think they would do an endoscopy.

[aklap]

Hi Kim,

Do you know what tests were done? Blood work is not perfect by any means. One problem with the tTG [Anti-tissue transglutaminase] & EMA is that it can return a false negative in cases where there's not Total Villous Atrophy. If there's Partial Villous Atrophy, it's reliability goes down [thus bringing down the numbers]. Keep this in mind when you are dealing with the docs. The docs may not know this. They may look at the numbers and say - "Well, it's in range, she's fine". If it were my child and considering the percentage of T1D's that are dx'ed with CD and the family history - I'd not let this rest. The sooner you catch this, the better off she'll be. One thing to consider - if all testing comes back negative - doing a serious GF trial and see how she feels. If she feels better, use that as your guide.

In order for these tests to be as accurate as they can, one must be consuming gluten. Blood work can start to normalize in weeks/months (http://www.clanthompson.com/exp_doctor.php?status=show_qa&coded_question_id=58&coded_category=Tests%20and%20Their%20Results&coded_category_id=4). In adults it can take up to 1-2 years. How long was she GF?

In kids < 5, sometimes the blood work is not accurate because it's felt they don't produce the antibodies. However, that should not be the case for villi damage. If it's damaged, it's damaged.

Good luck!!

Celiac Disease Center at Columbia University (http://www.celiacdiseasecenter.columbia.edu/C_Doctors/C05-Testing.htm)


Seronegative celiac disease

Both the anti-tTG and the EMA titers correlate with the severity of villous atrophy [26-29]. As a result in the presence of partial villous atrophy either antibody may be negative. In addition the mode of presentation of the celiac disease, i.e. presence of silent or subclinical celiac disease may be associated with a negative EMA [30]. Clinically seronegative celiac disease is similar to sero-positive celiac disease [23, 28] In view of the possibility of the presence of celiac disease in the absence of a positive anti-tTG or endomysial antibody the presence of a positive IgA AGA should prompt a biopsy [13]. Several studies have demonstrated that reliance on either anti-tTG or endomysial antibody as a single test will underestimate the prevalence of celiac disease [23, 25, 31, 32].

More testing info (http://forums.glutenfree.com/viewtopic.php?t=217)