| Subject: Re: PKD AND DIET .LETS TALK ABOUT THIS.PLEASE |
Author:
Beth
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Date Posted: 20:26:34 10/09/06 Mon
In reply to:
's message, "PKD AND DIET .LETS TALK ABOUT THIS.PLEASE" on 20:39:17 09/28/06 Thu
There's a lot of debate on what diet is best for someone with PKD. I talked to one of the doctors (Dr. Steinman) at the 2000 PKD conference (know it's been a while ago but I haven't been to another one, too far and expensive for me). He told me that the low protein diet seems to have the most effect if you still have good kidney function. It doesn't seem to do much one way or another if you're in the middle range but can help limit the side effects (nausea, itching, etc.) of low kidney function.
My own experience has been good in that my kidney function has been in the 70-80% range for the last 10 years. The main problem I had was trying to limit my protein too much which made me very tired. I think my function dropped down a bit after raising the amount of protein in my diet but I feel better.
My sister was diagnosed last year after a nasty infection. Her function is in the 40% range which I'm sure the infection didn't help but it's a large difference from mine. She is 3 years older then me so that could also be a factor. She's cutting back now on protein to see if it helps.
You have to be cautious about what you read in studies. They tend to contradict one another. There are different factors to consider about how much weight to give to a study. For one, who did it or paid for it. If it's a study by someone trying to sell you a supplement, it's not as trustworthy. A government adgency is usually a better source.
I give less weight to animal studies compared to human ones. Rats aren't people and people can have very different reactions to the same thing.
As for trying Omega 3 oil or animal vs. protein, I think as long as your neph doesn't think it can hurt you, it's ok to give it a try. Compare your test results before and after starting something to see how it seems to be affecting your kidney function.
There's also a site devoted to PKD and Diet at
http://www.pkdiet.com/
The woman who set it up is very big on an alkaline diet but I found it too hard to do along with a low protein diet. Some people on the PKD lists were very big on it and felt it helped them but there's not any specific studies that I know of linking it with better kidney function. The low protein diet does so I went with it. But if you're looking for a site where they discuss different things to try for your kidneys, this is it.
I'm with you in that I'd rather try to do what I can to keep my own kidneys going then just wait for dialysis or transplant so if you come across anything interesting, feel free to post it on the board. All I ask is that you be careful to make clear what kind of studies, etc. that back it up and it's safety record. People are willing to give a lot a try when they're scared of losing kidney function and I don't want anyone to try something that could hurt them.
>many sites have posts that say studies may indicate a
>low protein diet possibly will slow the progression of
>pkd.
>if this is true at all then shouldnt we all look into
>diet?
>and what about animal protein vs plant protein?
>is it all dificult for the kidneys to process?
>i also have read omega 3 fatty acid will help and soy
>might help. does anyone think these things might help?
>or is this just another case of wishful thinking?
>i read one case study that low/no protein along with
>some pills can actually stop the progression and the
>need for dialysis. what about excercise?
>it seems most nephs just right off start with the talk
>about dialysis and this seems depressing to me. plus
>what is the outlook for pkd patients that must be on
>dialysis?
>ive read some bleak reports on that as well. what are
>we to believe?
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