Jennifer – My two month old son was just diagnosed with Galactosemia. Galactosemia is a metabolic disorder where he lacks the enezyme to break down galactose. He will have to live the rest of his life dairy free. This is not a form of lactose-intolerance. Where lactose intolerance is an allergy, galactosemia is a genetic disorder.
People with this disorder cannot break done the sugar in milk–any animal milk. The sugar then builds up in the persons system and becomes toxic. It can cause liver and kidney damage, brain damage, developmental damages, and even death.
I am grateful to have found a dairy-free food site where I can find things like dairy-free mac and cheese and crackers. My husband and I are changing aour diet to accomadate our sons diet. Finding your site will make that easier. Thank you.
Update from Jennifer (January 2011 – the original story above is from July 2007):
Almost 4 years ago I found your site when my 2 month old son was diagnosed with Galactosemia. (My personal story is still on the website [above]) 🙂 My son is almost 4 now and doing wonderful. After further testing, it was discovered that he had the variante case, Duarte Galactosemia, meaning that he could not have milk/milk products for the first year of his life, but then could slowly be introduced to milk/milk products.
I am writing you again because we are about to have baby number two. I am not stressed about how I will deal should this child have any version of Galactosemia because I have this website to turn to. I know that I will be able to find everything I need to make any adjustments I may need to make. I just wanted to say thank you for still being here.