Straight to the point - don't ask these people. Don't ask me either.
Search Google for the name of your disorder and see if you can find others with this problem. I was researching low protein diets and came across a mother who put a website up with a lot of recipes that tasted good and avoided protein as much as possible due to her son's condition
Now that is the sort of person you should be looking for to speak with, and don't forget usenet and the 'older' internet areas that might have special interest groups
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