Cistic Fibrosis and Protein

[hardhanger]

My daughter has cistic fibrosis and I was wondering if anyone knew the affects of protein in the diets of people with this disease? Please advise.

 

[BOOMSHAKER]

Is she currently taking any digestive enzymes to help break down her foods so it can be utilized as quickly as possible before she eliminates?


For C.F. patients I have seen a good combination of things that work for both weight gain and good absorption of nutrients.

Ask your physician about AquADEKs for optimum absorption it's a good antioxidant/multivitamin and mineral supplement. Formulated with microsphere technology.

Also see if her CF doc has any Scandishakes around. Most drug reps bring cases of these to give out free of charge. Here is a link for more info on the shakes. While these are a little lower on protein and higher in carbs, I am sure you can add some protein powder to it. BUT, make sure to check with your own CF doc first.

**broken link removed**

 

[Frank-Oh]

So stuff like Aminogen (Protease) doesn't work??

Is she having problems with digestion now??

Check out trueprotein.com you can select the types of protein you want and add digestive enzymes to it.. You can buy a lb of each protein and see which she deals with the best. Avoid egg proteins as they tend to be harder to digest for some... I don't know shit about CF but I do know my proteins...Their PREMIUM and BLACKSTAR LAB flavors are all excellent..

Best of luck!!

 

[hardhanger]

Thanks guys she is currently taking ADEK and has been taking digestive enzymes since she was diagnosed at age 1. My wife and I eat high protien diets and so as a 10 year old she goes home and repeats all to her mother. Now I understand it is harder for her body to digest complex protiens we do not make her eat lots of protien we just try to have her look at what is in what she is eating before she eats it and to include as much protien as possible. She doesnt eat fish, chicken, or eggs and I am not really looking to put here on any supplements her growth is off the charts and she is doing very well. Her mother doesnt care about how she looks and I dont want my daughter to end up like that. The real issue here I guess is her mother is trying to say protien is not good for CF patients but I tend to dissagree you must have protien for growth at any stage in your life. I appreciate any help, opinions. Thanks Hardhanger

 

[Frank-Oh]

Thanks guys she is currently taking ADEK and has been taking digestive enzymes since she was diagnosed at age 1. My wife and I eat high protien diets and so as a 10 year old she goes home and repeats all to her mother. Now I understand it is harder for her body to digest complex protiens we do not make her eat lots of protien we just try to have her look at what is in what she is eating before she eats it and to include as much protien as possible. She doesnt eat fish, chicken, or eggs and I am not really looking to put here on any supplements her growth is off the charts and she is doing very well. Her mother doesnt care about how she looks and I dont want my daughter to end up like that. The real issue here I guess is her mother is trying to say protien is not good for CF patients but I tend to dissagree you must have protien for growth at any stage in your life. I appreciate any help, opinions. Thanks Hardhanger

Right, but lets not bullshit ourselves. We use certain equations when we construct our diets.. I use 2g per lb of LBM.. That's 400g of protein for me.. Most people can survive and thrive on 60-100g of protein a day. Nutritionists only recommend about .5g of protein per lb of lbm..

Have you spoken to a nutritionist, say someone who works at a hospital for children with such illness? What about alternative/natural medicine? You may get some more helpful insight from those folks..

 

[vegemite]

I'm 22 and was diagnosed with cf when I was born, my latest dietitian at the hospital nearly had a heart attack when I told her how much chicken I eat daily, and stated ridiculous claims about protein killing kidneys that my doctors laughed at...
I've been reading up on the whole protein damaging liver/kidneys issues for years and I've never found anything regarding protein damaging cf patients, or even healthy people. Also all my blood tests are normal(for me) the last few years, nothing has gotten worse.
I've never found anyone working with cf to know much at all about the "protein damaging" issue. It's really confusing.

Anyway, what I'm trying to say is, I've never had a problem with high protein. After experimenting with my creon enzymes, I've eliminated any digestive problems that I had. Kidney values are all fine, liver values are pretty elevated, but they've always been like that - that's from 22 years of daily antibiotics.