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I am a therapist(autism) for a 2 year old girl just diagnosed with CSID. Her mom and I are searching without success for a dietician or nutritionist familiar with this rare disorder. It is imperative that she get on to a specific diet in combination with the med Sucraid. Is there anyone out there who can help us?
Thanks so much!

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There is a website at csidinfo.com with some good info and also a greap group on yahoo for csid where parents discuss their children and brainstorm together. Just go to groups and type CSID. I think it is the first one that pops up. Good Luck. My 8 year old daughter was also just diagnosed after being sick her entire life. I am also finding diet to be the hardest part of the problem.
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I have felt your frustration for over three years now. Most search results only lead you to links explaining the disorder, but lack what to do with the diagnosis!

As a result, I am writing a cookbook/resource guide devoted specifically to the CSID diet.

For more information about this project, please see my blog at http://aplacetostartwithoutsugarorstarch.blogspot.com

The more feedback I get from parents concerning the urgent need for this book, the sooner I will be able to publish it and get it into the hands of the parents, nurses, doctors and dieticians who need it.
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I have two children with CSID, ages 13 and 6, so I have been dealing with this for many years now. Each child is different and their tolerances are different. Figuring out your childs diet is a process of removing the sucrose and starches, getting on the medication, and then figuring out what your child is able to tolerate and in what amounts. My daughter produces 0% sucrase and 6% isomaltase enzymes, while my son produces 6% sucrase and 26% isomaltase enzymes; however, my daughter is able to manage a wider variety of food choices than my son.
I found it very helpful in the beginning to have someone to talk to who has been through this. You will not find many dietitians or nutritionists with much "expertise" in this area. As the parent, you will become the expert. Good luck.
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