New With Lots Of Questions!

[Team Young]

I just found this message board last night and was so encouraged! It is so great to hear from others that are experiencing the same things I am.

Here is the summary....my sweet son, 3 1/2 has been in the hospital 6 times in the last year. Mostly dehydration after throwing up randomly, constipation, and then more recently severe cramping, bloated, constipation etc. In November, they kept him for a week and ran every test I thought was possible. They sent us home with no answers and still a screaming toddler with massive pain. From a recommendation, we took him off Dairy and Gluten. We saw immediate results and we had a NEW and DIFFERENT kid. It was fascinating. I was told to try to reintroduce gluten and dairy and tried both with terrible results. Within days he was constipated, cramping, etc.

We can't test him at this point b/c he has been gluten for too long. So my mom gut says he has Celiac or a severe gluten intolerance. Either way, our diet is the same. I am in that place of being overwhelmed and trying to change our family's eating patterns.

So my questions.....

1. I have a 2 year old daughter. She has shown no signs yet. My son didn't start showing signs until 2 1/2. Should I limit her gluten? She doesn't get much anyway b/c we are mostly gluten free but I wasn't sure b/c of how genetic it is. ( Our peditrician today just told me he thinks my daughter and I should be off Dairy. When I was nursing her she couldn't tolerate me eating any dairy althought she seems fine with it now. B/c I am pregnant he said drinking Dairy now could make my baby have more problems with Dairy).

2. I am currenlty pregnant and due in May. Should I be limiting my gluten for my baby? When I am nursing should I be limiting my gluten?

3. Are their nutritionalists that specialize in Celiac that I could try to find?

4. I read the posting about the Rice Milk. My son drinks TONS of it and I just assumed it was OK b/c of the small amount. I guess I didn't realize the severity of even a small amount

5. Sour Supreme-Tofutti sour cream. I have looked on line adn they don't give a straight answer on whether they are gluten free. What do you guys think?

6. Should my husband and I get the blood test? Or maybe even my daughter?

Thanks for any and all help!

[Guest cassidy]

Glad you figured things out for your son.

I'm pregnant and due in May as well. I've been looking into many of your questions and unfortunately haven't found any concrete answers. I talked to the doctors at the celiac research center and they are currently doing experiments about if you introduce gluten later does it lessen the chances of celiac.

So, hopefully, some parents will respond to you and tell you what they did, but from the medical community's standpoint, there doesn't seem to be many answers yet.

I am going to breastfed and delay introducing gluten to my baby until he is at least one year. If he seems to be doing fine with eating gluten then I will probably keep him on a gluten "light" diet. I don't like the idea of feeding him gluten because it will get me sick, so he will probably eat like me at home and be allowed to have gluteny treats from his dad and when he is at birthday parties and things. I don't want to deprive him but at the same time they can't tell me if eating less gluten is helpful and I don't want to feed him things that are going to get me sick all the time.

I would say to watch your daughter and new baby and if they have any signs, definitely think of gluten first. Some families go totally gluten-free because it is easier for them to do that than to make special food for one person. It all depends on your family. My instinct would be to go gluten-free when you are breastfeeding and to limit your daughter's intake, but I have no evidence that those steps will lessen their chances of developing it.

Good luck!

[Juliet]

Unless the rest of your family has been gluten free, too, the latest recommendation is that everyone who has a close member with Celiac Disease receive the full blood screening. If you do a search on this forum, you can find out exactly what they need to test for. You can also have genetic testing on your daughter (and eventually your newborn) to see if they even have the gene. Something like 99% of all people with Celiac Disease have one of two gene markers - HLA-DQ2 and HLA-DQ8 - but approximately 30-40% of the population has one of these genes as well. The gene does not say you will definitely get the disease, just that you can get it. If she doesn't have the gene, you don't really need to worry about it.

Our household is gluten free for our son just so we don't have to worry about cross contamination here. He's exposed to possible cross contamination whenever he's out playing with friends or staying at someone's house, so I want to limit how much potential exposure he gets since even a bread crumb can make him sick. We are more or less keeping his little sister gluten free, too, until the gene test is done. She's only had a few bites of gluten in her whole little life (15 1/2 months).

I don't have the disease (I got the blood tests done), but now after being gluten lite for over a year, I've lost my taste for gluten entirely. I actually don't want gluten breads, cakes, pasta, etc., because no matter how light the texture is it feels so heavy in my stomach. My husband is also gluten free and notices a difference - he had some of the markers for the disease but never got tested. But he definitely feels better now that he's been completely gluten free for the last two months.