duarte variant of galactosemia

[brookescott88]

hello,
i have a 4 month old son with the duarte variant of galactosemia. after all of our testing he is back on breastmilk and doing great but wondering about when he is older and diet restrictions. my older son who we are not sure if he has it or not (both my husband and i are duarte carriers) has had loose stools forever and we are not sure what to do. i have tried the rotation diet and it seems very random. would love to meet someone else in the same predicament.


thanks,
brooke

[JaneS]

Are you supplementing your little one with bifidus? Natren Life Start is a good one. EBF babes are supposed to be bifidus dominent.
http://www.massbfc.org/formula/bottle.html

Loose stools in this house means intestinal flora imbalance. Bacteria and yeast overgrowth cause the diarrhea. That can also cause inability to digest lactose b/c it's your intestinal flora that makes the enzyme lactase.

And inability to digest other foods as well. It's not necessarily a food allergy but a functional problem with the digestive system so that the foods are not getting broken down as they should. The whole food molecules are reacted to by the body as invaders and thus "allergies" develop. See Healing the Gut Tribe Cheat Sheet at top of H&H Forum.

[brookescott88]

flora

hi jane,
i have been giving my three year old almost everything to help. i will take a look at the cheat sheet. he is very very sensitive. i have given him childrens formulations of cultures and it gives him reflux.
thanks for the info!
brooke

[wendy1221]

I would post this in the main health and healing forum. Galactosemia is not an allergy. If you find out your older son does not have it for sure, post back again and we might be able to help you.

Jane, flora will not help someone who is genetically missing the enzyme to break down galactose. Flora will help break down lactose, but lactose is broken down into glucose and galactose. Only an enzyme in our bodies will break down the galactose, flora will not help w/ this step. I completely agree w/ you if it turns out the older son does not have the condition. Of course, even if he does, flora won't hurt. I am a big proponant of probiotics. But it won't solve the problem if the problem is galactosemia.

[JaneS]

Can you supplement with digestive enzymes for the galactose issue?

Your son having reflux can also be a function of missing digestive enzymes/intestinal flora. I can relate, my DS is very sensitive as well. I would recommend stool testing to try to figure out what is going on...a CDSA.

[JaneS]

Sorry, I didn't mean it to sound like it would solve the galactosemia issue! (speaking more to the older child's issues)

[brookescott88]

hello,

thanks....
sadly nothing can help galactosemia aside from a strict diet. we have not had a genetics test on our 3 year old but i just don't know what to think anymore. we all take a type of probiotic but it has no affect. there is little research on duarte which is frustrating. i will try this on another forum.

thanks for all of your info

best,
brooke

[JaneS]

I wasn't suggesting a genetics test, (of course it might be warranted) but a stool test. The CDSA is a Comprehensive Digestive Stool Analysis from Genova Diagnostics (formerly Great Smokies.) Both DS and I had serious digestive problems (he still does) and we needed to go way further than just taking a probiotic to see any effect.

[brookescott88]

hi jane,
i am going to look into the stool test. sounds interesting. i am already battling with the insurance company about all the testing we had to have already so the genetics testing may take a bit. going to try and see if i can get the state to further test what was on his pku card from birth. ready to tear my hair out!!!