How Often Does One Need To Be Tested

[beksmom]

Im a mother of three boys and two have the boys already been lab tested for celiac since i have it. My youngest 13, tested boarderline and my 17 yr old, tested negative.

Two questions :

1. Since my youngest one tested negative does that mean he will never have celiac, or should he be tested anually?

2. Can someone give me a chart showing me the numbers for : normarl-boarderline-positive-severe . I have an appointment with our family doctor in two days and he doesnt seem to be very educated on this disease so if i get the numbers it would help me going into this appt.

Thanks for everyones help : ) BEKSMOM

[seashele2]

There are false negatives and false positives on celiac panels. And no, just because someone tests negative once, doesnt' mean they will never have celiac. The body can turn on itself at any point of a person's life if the genetics are there.

Six years ago after my diagnosis, my daughter was tested. The result was negative. We were told at that time she should be tested every 2-3 years. Down the road, our docs changed and the new one wouldn't retest her because the first test was negative even though gluten-containing foods were causing her problems. We just put her on a gluten-free diet ourselves. My husband's sister, my uncle and myself are celiac and I wasn't going to let her be sick when I was certain of the cause. Round three of docs now and this one says she should have been tested, but putting her back on gluten for a couple months would be cruel, so still no celiac panel to "make her official". There is a gene test however and that is how we are proceeding. If she has the gene(s), we will go with her having celiac. If she does not, we'll start searching in another direction.

A gene test may be the way to go for your son if his celiac panels remain borderline, but I do think if it has been a couple years, you would be in line pushing for another celiac panel.

Michelle

Western Washington state