Getting Kids Tested

[angelschick]

Just kinda learning still but I have a question - it is suggested you get children tested if you are positive yes? How did you guys go about? Were the pediatricians helpful? It seems so many Doc's are clueless on this disease, just wondering what the experiences are like of getting kids screened with a positive family member?

Thanks

Amy

[Mother of Jibril]

I talked to my son's pediatrician a couple of weeks ago. When I told her I have autoimmune hypothyroidism and one of the genes for celiac disease, all she said was "Bummer." Hmm... IMO, "bummer" is when you lose a sock in the dryer. Not finding out that your own immune system has been attacking your body and both of your kids are at risk!

There's no need to test my nine-month-old son... I've been off gluten for four months and I've never given him solid food with gluten. My daughter might test positive. I think what I need to do is just make an appointment and ask specifically to have her tested for celiac disease. I did that when I caught her chewing on a lead weight (!!). I had her iron levels tested at the same time... all I had to say was that "anemia runs in my family."

It is a good idea to have all your first-degree relatives (parents, siblings, kids) tested. Those genes have to come from somewhere.

[bear6954]

My sons family dr and his GI dr worked closely together. Since my son was positive, my daughter, husband and myself were dna tested. Our insurance covered it (tricare). My daughter and husband are negative. I am positive and so is my son. My son had the endscopy and so did I. He has celiacs and i am negative. I wanted to know who had the genes so that I could prepare for the future. I make my drs listen.

[lizard00]

I had my son tested in Sept. My ped was totally on board, even when I corrected him about a test.

But seriously, he understood that somethings could be avoided with early diagnosis, and we both felt it was worth it. As it turned out, he is NOT IgA deficient (I am), and his tTg came back at 0. I was fine with negative, especially because he doesn't have any symptoms. And trust me, I watch him like a hawk.

I am going to talk to the doc at his 4yr appt as to how frequently he should be tested. For now, he eats pretty much everything!