Phosphorus diet

[lruffner]

Ok folks, help me out here!  I have just been told to watch my phosphorus intake, but they didn't send me to a renal dietician. So, being the research queen that I am....lol....I went to the gov. website for nutrition content and it's in everything!! I am pretty much afraid to eat anything. Can anyone tell me what is somewhat normal amounts, when you are at stage 4 ckd? They never told me any sort of allowance. Another problem is that I have a protein spillage problem, so I need to watch that as well as Potassium....well what you can eat for one, you can't eat for the other    I am starting to lose my appetite anyway and have just recently lost 15+ lbs....don't have a clue when or where it went, it just wasn't there one day! 






EDITED: Moved to diet section-kitkatz,moderator

[willieandwinnie]

lruffner, losing weight is not unusual for kidney patients, when your chemistry gets all screwed up you lose your appetite. Now, having to watch all the things you eat can really get to be a drag. Phosphorus is in everything just about, you should request a meeting with a renal dietitian and get some idea of what you need to be eating. Now, don't take her word as Gospel because if left to them you'd eat nothing but sugar. In the real world, smaller portions is the key and watch bananas and potatoes and other really high Potassium food because that effects the heart. Meat and beans are the culprits of protein and there you should just watch the portion size (I'm guessing 3 or 4 oz). We learned that Len (the dialysis patient and transplant patient) could eat just about anything in real moderation. Have they done recent lab work so you know what your numbers look like. Ask for a copy of them and get copy everytime you have labs drawn, it really helps you keep track of what you need to do. There is a kidney friendly cookbook available on-line that our okarol posted the link to some on this site, maybe under recipes or when she see this, she'll head you in the right direction. If you do a search here you'll find all kinds of information and guidance on protein, potassium and phosphorus. Good luck to you. 

[flip]

It all depends on your numbers from the labs. If your phosphorus and potassium are within the normal range, you don't have to worry too much. When I first started dialysis, my diet Rx called for 1200 mg. phosphorus and 2000 mg. potassium daily. After a couple of months, both levels were too low so I had to adjust and eat more. I guess what I'm trying to say is that everyone is different and you just have to watch your numbers and adjust accordingly.

[bolta72]

do you take binders?

[lruffner]

I am not on any binders yet and had not even heard of them until I started coming to these sites. My phosphorus bounces between 4.7-4.9, still within normal limits and my Potassium is 4.9. No one has mentioned checking my PTH, which I also just learned about on the net. I promise, these docs have told me nothing...absolutely ZERO! They say what they are going to do, but never anything about the disease, what to expect, etc...nothing to help me out or understand. Yes, I ask plenty of questions, while I am chasing them down the hall to the next patient's room. It ticks me off!

They tell me to watch everything, but don't provide any resources to learn how 

Thanks for all of the info and sorry to vent so much, but this is the first time I have been able to in a year. 

[jbeany]

Vent away!  That's what we are here for - mutual support!  Dairy products are high in both phos and potassium, so that's another thing to watch out for.  Dark colas are also really high in phos.  If you do have protein, it should ideally be healthy white meat, fish, or eggs.  You can't cut all of the phos out of your diet - you'd never get enough protein to keep up your albumin levels.  Not sure how much help the dietitian will be anyhow.  They tend to give you a long list of foods not to eat, but no idea of what you can eat.  Flip is right as well.  Right now, your numbers are fine, so you can keep eating what you are eating now if you want to.  Watch the labs, and adjust when the labs show that you need to change. 

The only food that is completely off limits is star fruit.  It's got a neurotoxin that can be fatal if you have bad kidneys.  Everything else is fair game, at least in moderation.  Don't eliminate anything you truly love to eat - you just feel deprived and end up binging on it anyhow. 
For now, be sensible-  limit colas, and dairy products, have limited serving sizes of meat, switch from orange to apple juice for the potassium levels, be careful how much tomato sauce you eat (it's really amazingly high in potassium), avoid bananas and cut down on potatoes (also big potassium sources).  If the phos levels start creeping up, get the doc to give you a binder prescription.  You can also use Tums for binders if your calcium is not too high.  Don't try to revamp your entire diet in one fell swoop - that's just setting yourself up to fail.  Focus on a few items at a time, and see if you can find healthier alternatives that you still like.  Don't let it overwhelm you!

[lruffner]

Thanks jbeany, that was very informative. I believe one big mistake that I made, was to check out the agricultural website on nutrition content. Most meat is very high in phosphorus as well, but then again, I am not sure what a reasonable number is. For instance, to be considered low sodium, it has to be under 40 mg....but I have no clue about the phos.

Thanks again and have a great day!

[ODAT]

...

The only food that is completely off limits is star fruit.  It's got a neurotoxin that can be fatal if you have bad kidneys. ...

This is something that not many people realize. I think if any establishment is going to put this fruit on their fruitbar, there should be a warning as well. I was at my friend's bridal shower and that was the first time I've ever seen starfruit on a fruitbar. scary.

[Rerun]

Dairy products are high in both Phos and Potassium.  Milk, cheese..... but you can have cream cheese and sour cream and some cottege cheese.  Milk is my favorate and I miss it.  When I see a little kid drinking a full glass I want to rip it out of his/her hand.

[kidney4traci]

I actually never heard that about the star fruit.

[BigSky]

Since your labs are still normal, it sounds to me they are just giving you a heads up.  Meaning getting you to do some initial research so that you will not be overwhelmed with information when your labs get out of range and the dietitian steps in.

Here the renal dietitian is associated with the dialysis unit and the doctors have privileges but are actually separate and they do not have a renal dietitian employed at their location.  It might well be the same with your doctor.

[Psim]

I wouldn't worry about not seeing a renal dietician. When I finally saw one, she was very vague and general. I've learned much more here.  JBeany should be given an honorary degree. DDS: Doctor of Diet-Smarts.

[lruffner]

Yea, I had never heard of the star fruit thing either, but I have since read up on it.....scary! I probably wouldn't have eaten it anyway, I am kind of partial to American fruit.

Maybe you are right BigSky....they just told me not to eat any dairy products, chocolate, or dark cola. I never have liked milk, but ice cream is a different story all together! lol. The hardest part will definitely be cooking for my husband....picky eater, who eats cheese by the pound! He also only likes red meat...woe is me. This whole phos. thing scares the crap out of me, because I just don't know enough yet, but I am sure that I will get the hang of it!

[jbeany]

Don't worry - no one expects you to memorize it all at once!  I gave up my daily doses of milk, chocolate and peanut butter, and then started cutting down on cheese.  I still eat more red meat than I probably should for my health, but as long as my labs are good, I refuse to cut down on everything that I love.  I just make the things I need to cut back on treats instead of staples.  I know how overwhelming it all seems though.  When I started, I didn't think I would ever get the hang of a diabetic renal diet and still be able to eat something besides lettuce and applesauce!  Read all the posts on here in the diet and recipes sections - we've spent a lot of time discussing food options on here.

I wouldn't worry about not seeing a renal dietitian. When I finally saw one, she was very vague and general. I've learned much more here. JBeany should be given an honorary degree. DDS: Doctor of Diet-Smarts.

Everything I know, I learned from Zach - he's the diet whiz!

[flip]

I'm still doing the Dairy Delicious milk and cheese sauce. The nephrologist who developed these products used to be the director of my dialysis center. The low phosphorus milk is really good and much much better than soy or rice.

[Zach]

Everything I know, I learned from Zach - he's the diet whiz!

Gee, thanks jb!
 

[Bajanne]

I actually never heard that about the star fruit.

do a search here and you will find we had some threads about it.  You can also google it and you will find out.

Here is the main thread that discusses it.  http://ihatedialysis.com/forum/index.php?topic=1216.0

[Bryce]

A good way to lower potassium in your vegetables is to boil them instead of steaming, but don't forget to throw the left over water away (do not use it to make yourself a gravy!). If you want to have chips or roast potatoes you can par-boil your potatoes for 5 to 10 minutes before frying/baking.

[lruffner]

Wow! Thanks everyone...you all are so helpful. I had felt like I was just thrown to the wolves...lol  Glad you are all here to keep us newbies straight!

So Jbeaney, I can still have a bite or two of everything I like? Chocolate, potatoes, and tomatoes will be the hardest to give up completely....ooooh, I love peanutbutter too. As long as I can have one bite of them sometimes, I can probably survive.

Thanks for the link Bajanne and Zach, glad we have a diet professional here! 

Flip, are the products you use available at stores? I am not a milk drinker, but I do love cereal!

Well, I am off to the nephs today, so maybe I can hold them for ransom until I get my answers!

[flip]

Lee...their website lists stores where they are available. There are none in our area but you can order direct from the company.

www.dairydelicious.com

[jbeany]

So Jbeaney, I can still have a bite or two of everything I like? Chocolate, potatoes, and tomatoes will be the hardest to give up completely....ooooh, I love peanutbutter too. As long as I can have one bite of them sometimes, I can probably survive.

Yes, all things in moderation!  I find it's a mental thing, mostly.  If you tell me I can't have it at all, that's the one thing I crave the most.  If I know I can have it when I really want it, it's not a big deal to skip it.  Portion sizes are important as well.  I shouldn't have an entire chocolate bar, but a single square of Dove chocoloate with my healthy dessert keeps me from feeling like I'm deprived of my favorite treats without messing up my diet.  Don't super size the fries, order a small size, and try not to finish them.  Order the burger if you want it - just hold the cheese, and don't order a double patty.  If you are craving pizza - either have only one piece with a salad, or make your own and top it with a minimum of sauce and cheese.  It helps a lot if you can cook, but it's possible to be sensible about it  even if you don't spend a lot of time in the kitchen. Don't beat yourself up about messing up - it's a lot to learn!

[lruffner]

Thanks flip...I am going to order some!!

That sounds great jbeany. At least it is doable!

Just got back from the nephs and as usual, I had to bring up the phosphorus, and he decided to go ahead and put me on renagal or whatever it is called.

Now everybody says it's too late to treat me....I just don't understand at all    Six weeks ago they wanted to wait and see, and now it is too late...what gives? Do we only have a few tenths of a point in our creatinine level to be considered treatable? I have just gotten started with all of this kidney crap and it already feels like a hopeless situation...sigh.

[Bajanne]

So Jbeaney, I can still have a bite or two of everything I like? Chocolate, potatoes, and tomatoes will be the hardest to give up completely....ooooh, I love peanutbutter too. As long as I can have one bite of them sometimes, I can probably survive.

To maintain our sanity, it is a good idea to take just a little of things we are not supposed to have.  Just enough to taste.  I suppose everyone is different, but I know that for me, if I feel I can never have something, it becomes such a deal to me, and I might end up saying "Oh well!" and just pig out on it!  And our dietician told us that the morning before dialysis is a good time to take somethings that are off-limit, like a banana or an orange.