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Hi Everyone,

My little girl Katie is four years old. She was born with almost total kidney failure and has had GI trouble her whole life, starting with a pyloric stenosis and feeding tube, a scare during which we thought she had cyctic fibrosis, intermittent diarrhea and frequent abdominal pain. She is in feeding therapy as we try to get her to eat by mouth, but we are not having too much success. She is dependent on her tube feeding for nearly all her nutrition, and both of her formulas, which are specialized medical formulas, are gluten-free. Last month, after her 7th endoscopy, she was diagnosed with celiac disease. Even though she eats little by mouth, the foods she does like are gluten-loaded. So we have had to change things for her, searchng for gluten-free alternatives. She always asked if she can have something before she eats it and if I am not sure, she will hand it to me and ask me to check the "gredients." In reading the posts from the last few days, I see people mention unpleas
ant reactions when they happen to inadvertently consume gluten. My major problem is that since Katie has had to deal with pain and being sick, often very, very sick (she spent her first 27 moths on dialysis and had a kidney transplant 2 years ago), all her life, she almost never complains about anything. If she does complain, the pain has to be really bad or she has to be really sick. This child is not a wimp in any sense of the word. I have never in my life known a tougher person, not to mention child. We have been diligent about her food since her diagnosis, but if she happens to inadvertently get any gluten, she won't complain. It puts me in a tough spot because I do not want her to be in pain. We do the best we can, as we always have, and she is thriving. I wish I could be more perfect in what I can do for her diet, though. It's frustrating.

I do have one question I hope you can help me answer. In researching it, I keep getting conflicting answers (apparently not an uncommon experience), and her GI doc is not an expert in the gluten-free diet. Is modified food starch ok or not? She loves yogurt and is not dairy restricted. All the ingredients are fine for her, except the modified food starch. Celiac.com says food starch manufactured in the US is made from cornstarch and is ok, yet they list food starch on their forbidden list. Anyone have an answer to this so I know if yogurt is ok to give her or not??

Thanks,
Dani


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