Wondering about "never allowed" foods

[PaulBC]

After spending a lot of time with spreadsheets and the big USDA nutrient database, I have been able to come up with a lot of meals that fit within my daughter's sodium, potassium, and phosphorus limits. In fact, sodium has never been a big problem as long as we avoid packaged foods, and the limit has been raised since she switched to PD. Phosphorus has been the most difficult one, but her diet still isn't that different from what she was eating before kidney failure.

Despite all this, we were always told that specific things are not allowed at all. Specifically, no oranges, no tomatoes, no bananas, no potatoes, no chocolate, and no added table salt (and a few other prohibitions).

I am curious if it is more common for people on dialysis to avoid a food completely, or just have it now and then as long as the overall numbers work out.

My daughter takes all of the restrictions very seriously, and it is not that big a deal for her to avoid these things (even chocolate). There may also be a psychological benefit not to remind yourself of what you're missing, for fear of overdoing it. It just seems a little inflexible and kind of irrational to me. Right now, even the doctors have made it clear that keeping well nourished and gaining weight is a much higher priority than keeping phosphorus low. We're doing both and it's going OK.

I am not sure I need to change our approach at all, but it just drives me a little crazy when we agonize over what fruit to eat because she's tired of grapes and apples, but cannot have an orange. It would seem to make more sense just to run the numbers for every meal.

[Deanne]

I wasn't on dialysis for very long, but my only rule was to pay attention to my labs. Nothing was 100% off limits, except Starfruit. I severely limited many foods, but my labs were always on target, so I still ate pretty much everything, with the "bad" foods in small amounts. For instance, I drank milk only rarely, but I ate 1/2 cup of ice cream every Friday. I ate small pieces of chocolate regularly. Instead of a full-size candy bar, I'd have a "fun" size bar (who ever said that size is fun?) I sometimes put some banana in a smoothie, but "some" banana, not a whole banana. If I didn't care about a food one way or the other (oranges, potatoes), I stayed away from them altogether. I even ate pizza sometimes, but just a small slice.

[cattlekid]

I agree with you that everyone is different to how they tolerate foods and it also has to do somewhat with what type of dialysis you are on.  In center patients tend to have more restrictions because they just aren't getting as much dialysis.

It was my experience that dietitians like social workers tend to be stretched too thin to be able to help patients come up with customized meal plans like you did for your daughter.  It is much easier for them to issue broad edicts because some patients just don't get the concept of moderation.  This was one of my major frustrations when I was in center, so much so that I stopped talking to the dietitian entirely because she was of no use to me. 

[PaulBC]

Thanks for the comments! I don't want to lay the blame on our dietitian, who has given us a lot of great advice and emphasized flexibility. I just feel we have received a lot of conflicting information, and my daughter has internalized much of it in very black and white terms. That's understandable given her age, but I am interested in hearing other viewpoints.

[MooseMom]

Your daughter will have to find her own comfort zone.  She will have to decide how important these foods are to her and how much "flexibility" she is able to tolerate.

Some people just cannot control their portion sizes, so for them, it is better that they avoid certain foods entirely so as not to yield to temptation.

Other people are happy with a few slices of banana on cereal for breakfast and do not have a problem with gobbling down the entire banana.

If you like a wide variety of foods, then the whole diet things is much easier.

I found it easy to avoid oranges because I happen to LOVE berries.  I couldn't be bothered with all the things you have to do to a potato to leech out the potassium (peel it, soak it, drain it and then soak it again), so I substituted rice instead.  And pasta.

I personally found that there is an emotional element to the diet.  When you have a chronic illness like CKD/ESRD, you can feel like there is nothing in your life that you can control anymore.  Machines are keeping you alive, and it is easy to feel like your body is not your own.  I dealt with that loss of control by strictly controlling one of the few things I could, and that was my diet.  So I avoided the taboo foods altogether.  I probably really didn't need to go that far, but it made me feel better psychologically.

The most important thing, and I can't stress this enough, is for your daughter to be guided by her lab numbers.  Tell her to keep copies of all of her reports so that she can track her potassium, phosphorus etc.  She can experiment with foods and see how this affects her numbers.  If she wants to add a slice of tomato to a salad on occasion, let her see how that affects her potassium.

I was never on dialysis, but I spent 8 years on the pre-renal diet which is, believe it or not, even more restrictive than the dialysis diet (can't eat so much protein).  I was NEVER told that any food was "prohibited" (except for starfruit).  Instead, I was given the information you no doubt have, which is lists of foods with their phos/potassium values.  I was told to take this information and create my own diet. 

As you've already sussed, it is important to be well-nourished.  There is so much emphasis on which foods are "bad" that there is too little emphasis on how to eat safely and still be well-nourished.  But it sounds like the two of you are doing just great!

[iolaire]

One "never allowed" food I became aware of via this forum is star fruit. 

The dietitians know about things that will increase your levels of certain minerals but I believe in my case they left off start fruit which is actually toxic/harmful to those of us with Kidney issues!  And since I travel a good bit I'm sure I was eating star fruit a bit at a breakfast buffet only because it was there. 

Also it would have been good if my nephrologist mentioned it (more than a few times) for the seven years prior to dialysis (there is a chance he could have mentioned it but I don't remember it).

[Michael Murphy]

Actually I know that no one mentioned star fruit to me prior to finding out on this forum.  Then to verify I looked it up through Google and had the [CENSORED]
Scared out of me.  When I started reading about deaths because of this fruit I was a little bit annoyed they warn me about oranges which I love which could cause my blood to go out of wack but no one thought to mention the one thing that could kill me dead. If I ran into this thing prior to finding this web site I would have tried it.  And it appears the best that could happen is the worse case of hiccups in the world. Cured by two 6 hour dialysys sessions. I know I am a lucky dialysis patient I still have some kidney function so I have a little bit of lee way in occasionally having tomatoe, banana and potatoes.  My blood work is usually perfect.  The lack of water restrictions and some leeway in my diet is a real blessing.

[Simon Dog]

My neph and dietician never mentioned carambola (star fruit) either.

[PaulBC]

Nobody mentioned starfruit to us either. It is good to know about it. I don't remember ever buying it, though I may have seen it at a buffet.

[thegrammalady]

It has been my experience that dietitians don't teach, they rant, rave, badger and say NO. The don't have time for anything else. Most people have no idea what a little bit of cheese means so you get what I once heard one dietitian say. "If he ever eats any cheese his phosphors will never go down"  I stopped talking to dietitians in my first year of dialysis 9 years ago after being told "I don't know. Ill have to look it up"  well I can do that myself!  And do frequently. A dietitian will tell you not to eat yogurt. My Doctor says Greek Yourget is ok because the amount of protein out weighs the phosphors and potassium. Just don't eat it every day. Watch your labs and adjust accordingly. Portion control is a key factor. I eat whatever I want. With the exception of star fruit.

[kristina]

Whilst pre-dialysis I was wondering a lot about "never-to-be-allowed" vegetarian foods
and apart from starfruit I have eaten every easy digestable vegetable and fruit (of course, all in moderation)...
Having started with dialysis, I have continued with the same vegetarian diet as before and my blood tests are fine.
Perhaps the most important point for us is to keep an eye on our monthly blood-test-results
and change "things" accordingly, if and when it becomes necessary...

[Athena]

Whilst pre-dialysis I was wondering a lot about "never-to-be-allowed" vegetarian foods
and apart from starfruit I have eaten every easy digestable vegetable and fruit (of course, all in moderation)...
Having started with dialysis, I have continued with the same vegetarian diet as before and my blood tests are fine.
Perhaps the most important point for us is to keep an eye on our monthly blood-test-results
and change "things" accordingly, if and when it becomes necessary...

Kristina, I'm just a bit curious as to what exactly prompted your docs to start dialysis recently. Your diet and blood tests sounds extremely stable before dialysis and thankfully now after starting dialysis. I often hear of people's potassium & other electrolytes really getting out of control, as well as feeling terrible as a reason for starting dialysis. It's really odd how people's experiences seem to differ. It feels like a bit of a lottery to me, quite frankly.
Wishing you well, Athena

[KarenInWA]

Also, how does one keep healthy albumin levels when on dialysis and a vegetarian diet? I have always been curious about this.  Thank you, kristina!

KarenInWA

[kristina]

Hello KarenInWA,
With my very simple vegetarian diet I have never had any trouble so far (touch wood) and I never use any seasoning ...
... and it shows in my blood-tests-results ... (touch wood it continues like that).
The reason might be, that I never vary my vegetarian diet and I have always kept it completely simple...
Good luck and best wishes from Kristina.

[kristina]

Whilst pre-dialysis I was wondering a lot about "never-to-be-allowed" vegetarian foods
and apart from starfruit I have eaten every easy digestable vegetable and fruit (of course, all in moderation)...
Having started with dialysis, I have continued with the same vegetarian diet as before and my blood tests are fine.
Perhaps the most important point for us is to keep an eye on our monthly blood-test-results
and change "things" accordingly, if and when it becomes necessary...

Kristina, I'm just a bit curious as to what exactly prompted your docs to start dialysis recently. Your diet and blood tests sounds extremely stable before dialysis and thankfully now after starting dialysis. I often hear of people's potassium & other electrolytes really getting out of control, as well as feeling terrible as a reason for starting dialysis. It's really odd how people's experiences seem to differ. It feels like a bit of a lottery to me, quite frankly.
Wishing you well, Athena

Hello Athena, I was found in a coma and complete kidney failure in 1971
and when my body was stable enough for a biopsy to be taken one year later in 1972,
the biopsy diagnosed me with Chronic Proliferative Glomerulonephritis... which is a kidney disease to rapidly deteriorate the kidney function ...
I then searched for a doctor who could help me to stop the rapid decline of my kidney-function and after many useless consultations,
I finally consulted with a medical professor at the end of 1972, who told me, that he could not prove it yet,
but he believed firmly there could be a chance to stop the rapid decline of my kidneys,  if I "went completely vegetarian" with my food...
He also told me that he would go vegetarian, if he were in my situation...
... and I thought, what would be good enough for him as a medical professional, should be good enough for me as well ...
and so I became a total vegetarian from then on and even though "the writing has been on the wall for my kidneys since 1971",
my "two little fighters" managed to function until December 2014 and I am very grateful for that !
Good luck and all the best from Kristina.

[KarenInWA]

kristina, now that you're on dialysis, how do you keep your albumin levels up on a vegetarian diet? Usually, before dialysis, we need to limit protein intake, then that flips once we start dialysis. How do you get enough protein to maintain healthy albumin levels? I am very curious about this, because I know a lot of dialysis patients who have trouble eating a lot of meat struggle with this lab value. Some dialysis patients feel like that's all they can eat all day because of how much they get harassed by their medical team about their low albumin levels. I noticed on myself personally when I ate a lot of BBQ one weekend before labs that not only was my albumin stellar, so was my K/tv. Just wondering how a vegetarian/vegan on dialysis manages healthy albumin levels.

Thank you,

KareInWA

[kristina]

Hello Karen,
I don't really know how it works with my vegetaran diet, but since I have started dialysis,
all my blood-test-results have come back as completely normal and the dietician and doctor have told me
to continue what I am doing because it is working very well for me...
I have not changed anything with my vegetarian diet which it is exactly the same as it was before, whilst I was still pre-dialysis...
I do eat every week three eggs and three portions of quinoa and that seems do "be the ticket" for all the protein my body needs...
...  as to all my other nutrients, the dietician and doctor have assured me
I should continue with my vegetarian diet as I did before, because my blood-results are very good
and it seems to work well for me to keep as fit and as healthy as I can possibly be in "my" ESRF...
(... and hopefully it continues exactly like that, because it took me long enough to work it all out... )
Best wishes and good luck from Kristina.

[Jean]

When it was first discovered that I had CKD, my gfr was 29, now, 8 years later, it is 27. I have had visits to my dietician, who is amazing in the past 2 or 3 years. She tells me the same thing my neph does. Everything in moderation. I can have an orange once a day she says, and just watch it for the rest of the day. Not saying anyone else should do this, but it works for me.

[iolaire]

Karen,
I don't really know how it works with my vegetaran diet, but since I have started dialysis,
all my blood-test-results have come back as completely normal and the dietician and doctor have told me
to continue what I am doing because it is working very well for me...
I have not changed anything with my vegetarian diet which it is exactly the same as it was before, whilst I was still pre-dialysis...

I'm sort of in the same boat with a non veg diet. I do take binders. But I wonder how much is my diet versus residual kidney function. I have a feeling I have it easy today and will need to make more serious dietary changes as time goes on.

[kristina]

Hello iolaire,
I "only" go according to what my blood-test-results "say" and I ask after every blood-results the neph and nurses if there is anything I should change with my diet
or if there is any deficiency showing... Luckily there was nothing that needed any dietary improvement so far (touch wood it continues like that...)
Good luck wishes from Kristina.

P.S. ...I still don't have to take any "binders" ... and I don't know whether I am very lucky there or whether it is a direct result of my strictly-veggie-diet... ? ... I "only" need my regular Epo-injections... and my daily low-dose anti-hypertensive medication, plus a very low dose of "my" daily diuretics-medication ... and whenever my "two little fighters" are getting a bit lazy with their function, I add to my daily liquid-intake one little cup of peppermint-tea and that puts the "whole show" back "into gear" again...

[noahvale]

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[iolaire]

As your residual kidney function diminishes you actually have 2 choices - continue to restrict your diet or increase dialysis time and/or frequency.

Do those two factors help remove phosphorous?

[noahvale]

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