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Hi! I'm so sympathetic with you folks, trying to cope with celiac for a child. It's hard enough to deal with when it's adults who are responsible for their own health.
I would second the comments already made by the others, it's pretty hard to figure out hidden sources of gluten, such as the barley malt in rice krispies, etc., unless you're quite knowledgeable about food terminology. If you're in doubt, try to find a local support group (the national GIG/Gluten Intolerance Group may be able to help you, www.gluten.net<http://www.gluten.net>). You might ask someone in a support group to help you walk through your kitchen and see if they find any gotchas you did not know about. I would refer you to a local dietician, but I have found that most dieticians are woefully ignorant about celiac, so I think the support groups, local and on-line, are more helpful. Where do you live? If there is no GIG group near you, you could also try to find a local chapter of CSA/Celiac Sprue Association:
http://www.csaceliacs.info/find.jsp
or ROCK/Raising Our Celiac Kids:
http://www.celiac.com/articles/563/1/ROCK-Raising-Our-Celiac-Kids---National-Celiac-Disease-Support-Group/Page1.html
If your family and household is not completely gluten free, it may be something as simple as a person who still eats gluten putting the knife into the peanut butter jar and leaving crumbs to be shared. Or you might find that a well-intentioned neighbor or daycare worker is giving your child cookies, thinking that her mama is being ridiculously strict.
I think that if your children are not seeing relief, you should also explore the possibility of other food allergies or intolerances. It is extremely common for celiacs, who cannot digest the long gluten protein strings, to also have a similar issue with dairy, egg, and soy proteins, and also it is common to not tolerate the milk sugar, lactose. Dairy is especially often the culprit here, and if the problem is with lactose (sugar), it could be transient, in that once the intestines heal, they could tolerate milk again. If the problem is with milk proteins (the names you will likely hear used most often would be casein and whey, there are also ©¬-lactoglobulin and ¥á-lactalbumin), then it may be an ongoing problem. In any case, I would try to immediately substitute alternative milks (my suggestion is to use a mix of two milks to get the best flavor: mix coconut milk with almond milk or hemp milk or sunflower seed milk, etc.; maybe avoid soy milk, at least at first). I think the flavor of the mixture is less likely to be an issue when there is a mixture, and of course, you can try adding vanilla or chocolate flavoring, or making it into tapioca pudding, etc., in order to get a child to try it the first time.
And avoid all egg and soy for a few days. If your child is having difficulty with any of these, I would think that you should start to see some improvement, at least in the vomiting and gastric symptoms, within about a week, and maybe, if you're lucky, right away. If not, you probably should have your child food allergy tested with a blood test that checks for about 200 foods all at once.
I would also recommend that you try signing on to this forum, it's free, although you can buy a paid membership for extra privileges. The Celiac group there is a large one, very caring, and very responsive to others' needs. They have a lot of members who are celiac themselves or who have celiac children, lots of recipes to share, and some good advice about what works for them:
http://forums.delphiforums.com/celiac
Please let us know how it goes for you.
Linda, Seattle
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