I get hundreds of e-mails each month from parents of kids newly diagnosed with celiac disease or beginning the gluten-free/casein-free dietary intervention program for autism or ADHD. I thought it would be helpful to share some of these e-mails with you...
Celiac.com Sponsor (A12):
Dear Danna:
My four-year-old son is autistic, and were trying the gluten-free/casein-free dietary intervention program. There are no health food stores near me, so I have to drive an hour to get all of his food. Also, its very expensive. I dont know if we can afford this diet. Do you have any suggestions?
Lisa L.
Dear Lisa:
Dont feel locked into shopping at health food stores. With the exception of baked goods and mixes (bread, cakes, cookies, etc.), you can do most, if not all, of your shopping at a regular grocery store. You can even buy generics! The first thing you need to do is become familiar with the safe and forbidden ingredients. To learn whats allowed and whats forbidden on the gluten-free diet, there is an excellent list on www.celiac.com -- you may want to print it out and take it to the store with you. Then learn to read labels carefully. If the ingredients appear to be okay, call the manufacturer (theres usually a toll-free number on the package - I bring my cell phone into the store with me so I can call before I buy) to confirm that the product is, in fact, gluten-free/casein-free. Youll find that the list of things he can eat is a lot longer than the list of things he cant! Happy shopping....
Dear Danna:
My daughter is six and has always had terrible diarrhea. My brother and I both have celiac disease, so I figured she does, too. I dont want her to have to go through all the testing, so Im going to put her on a gluten-free diet and see how she responds. How soon should we expect to see improvement?
Pam F.
Dear Pam:
I know its tough to handle the thought of putting our kids through testing, but proper testing is essential. Your daughter must be on a gluten-containing diet in order for testing to be accurate, so I would urge you to get her tested quickly, before putting her on a gluten-free diet. Id recommend doing the antibody screen (a blood test) first; if its positive, Id encourage you to have an intestinal biopsy done on her. Believe me, I know its hard to put our children through these tests, but its important that you know for sure, and proper testing is crucial.
Dear Danna:
I suspect my nine-year-old nephew has celiac disease, but the doctors wont test him because hes in the 70th percentile for height and weight. He has gas and bloating, and occasional bouts of diarrhea. My brother (his dad) had celiac sprue as a child, but doctors told him he outgrew it.
Drew S.
Dear Drew:
First, people dont outgrow celiac disease (celiac sprue). Decades ago it was thought that they did - but now we know that celiac disease is a lifelong condition (sometimes symptoms may appear to fade away, but damage is still being done to the small intestine). Your brother should be properly tested (testing is much better now than it was when he was a child). If he does have celiac disease, your nephew is at greater risk for having it, too, since celiac disease is a genetic (inherited) condition, and youre right to suspect it. Sometimes doctors are reluctant to test for celiac disease - its extremely important to demand testing - if the doctor wont test, find one who will. (By the way, my son was in the 75th percentile for height and weight when he was diagnosed - some adult celiacs are actually overweight.)
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