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As a newborn my son was diagnosed with a variante form of Galactosemia (Duarte). I immediaty stopped breast feeding and then put him on soy formula. We had his levels etc. tested until he was 3 years old and all looke good. We then introduced dairy products. And he seemed to do fine. My concerns are 1. That he is extremely skinny at age 9 . He does very well healthwise except that he has incredibly foul smelling flatulence issues. All of his friends, teachers, bus drivers etc. have shown concern. He doesnt have any kind of cramping or stomach problems along with the flatulence.
Could he have an intolerance to sugar/sucroseor wheat since it relates to galactose? We also have wondered about Celiac disease, is this common for people with galactosemia to have?
Any help or advice you have will be much appreciated
I think that you will get better information if you go back to the forums page and post this on the expert /doctor forums ,it does sound as if he has some intolerance going on.good luck sorry I cant help you more .
In 1998, my son was diagnosed as a Duarte variant for galactosemia. After a series of tests during which time my baby was on soy milk, the doctors stated that he was a variant and, therefore, did not need a special diet. For the first five years, my son's bowel movements were more like diarrhea than anything else and he was so small compared to my older son. Still, the doctors assured me that he was thriving. At age five, his bowel movements became normal, but he remained tiny until he hit age 10. At age ten, he actually grew upwards and in weight so that he could even be described as "chunky." This past summer, when he turned 14, my son shot up again and his weight fell off him. Extremely slender again yet even taller than his older brother, my son seems to be thriving ... as the doctors always said. However, I find myself always wondering ... which is why I'm on this site tonight. My major comment is that the weight is probably not an issue. The doctors continued to assure me that my child was an individual and was growing at his own pace. I hope that you have found the same to be true for your own.
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