Siblings With Celiac?

[celiacmom2b]

My 6 (almost 7) year old son was diagnosed with celiac disease almost a year ago. We went completely gluten free in our home to make life easier because we have 3 other little ones. I was finding it too hard to try to keep their "sticky" hands from contaminating everything. It has been going fairly well so far. My problem now is that I question whether two of my other children have it also. They show some of the same symptoms as my son did. After my son was diagnosed we had them tested also and the blood tests came back negative. They were 4 and almost 2 at the time. We had my 4 year old daughter retested a few months later because she was getting those same symptoms too often. The symptoms being achy legs and belly aches. I know children get those aches without celiac but that's what my son's symptoms were. Her test came back negative, but we she was eating mostly gluten free. We tried to make sure she had gluten, but now I'm not sure if it was enough.

I was talking with another mom of celiac children and she had mentioned that they are not completely gluten free (she has 2 other children that have not tested positive...yet). Her doctor said that that it is hard to diagnose someone with celiac disease if they are eating, even somewhat, gluten free.

So my question is if I want to have my kids retested, how much gluten should they be getting and for how long prior to the testing. As much as I'd hate to bring gluten back into the house, I'm questioning whether I should so we can get a proper diagnosis if they do in fact have celiac disease. Any help would be greatly appreciated.

Thanks!

[jayhawkmom]

I feel for you. I'm in a somewhat similar situation. My three children and I are gluten free, but my husband isn't.

However, until the beginning of this year, my older son was still eating gluten. He has been tested every year since my daughter's diagnosis and last year his came back equivocal - this year they came back positive. He's 11, for what it's worth. He was tested the first time at 8, and every year after that.

I honestly have no idea how much gluten to have your kids eat, but I can understand how scary it would be after they've been gluten-free. I think I read (here) once that it has to be at least equivalent to a couple slices of bread, daily.

I wish you all the best!

[ang1e0251]

My friend's 20 year old daughter had to be retested and they put her on one slice of bread a day.

[Pattymom]

Myself and three of my four children are gluten free, though our household is gluten free at this point b/c it's easier ot just keep it out of the house. I am the only one with clearly positive bloodwork. the youngest, turned 5 this week, had severe reaction as an infant, major growt issues, etc. She had a scope in March after 1 year gluten free, te endo had us give her 2-3 crackers a day for 1 month, said it would b enough to tell. She tested negative, though she was horribly constipated the whole month, major behavior changes-crying and tantrums, and developed a rash-which we did not have biopsied for DH b/c enough testing already. Based on those results, he encouraged us to keep her lgutne free, though no diagnosis. My 13 year old was also retested this year--he had been eating glutne out of the house, and we had him on 2-3 servings of bread, cereal, or past a a day for about 2 weeks before testing--he came out borderline, but again, went off it all and was so much better.

I do wish I had medically documented test results for those days when the hassle seems like too much, but the fact that we feel better this way is what keeps us on the diet.

Patty