It's counterintuitive

I’ve been on my stupid renal diet for 6 years and do pretty well. I’ve seen a registered renal dietician about the pre-renal diet. I am not on D yet.

I have two questions/concerns. I had always eaten whole grain products but now, with the pre-renal diet, understand that whole grains are high in phosphorus. For six years now, I’ve eaten white bread, white rice (basmati rice) and white pasta, and I am concerned that this is not really good for me. I could of course drop these items altogether from my diet, but further restricting an already prohibitively restricted diet is too dismal a prospect. Any suggestions? Is whole wheat bread really that awful? Is rye bread a reasonable alternative? How about some other sort of pasta (I have a husband who’d eat pasta every day if I let him)?

My second question concerns the difference in phosphorus from legumes/vegetable sources from that from animal sources. I do not eat processed meats because of the phosphates (although I have found really good bacon that has no phosphates), but I know that meats you cook yourself still have phosphorus. I would love to go on a vegetarian diet as beans of all kinds are my favourite food, but there is the phosphorus issue again. I have been reading a few studies recently and hearing some discussion (on the Davita site from their Indian dietician) that say that phosphorus from lentils is processed differently than that from meat and is “safer.”

Can you guide me, please? Thank you!

Dear MooseMom, it in part depends on what your Ca+, PO4 and PTH run at as far as how much phosphorus you can take in your diet. In general as you already know, less is better for many reasons.

You are asking a good question about the whole wheat bread which is what I eat. Fortunately, I have a normal ranging PO4 even on dialysis and have never taken any binders ever. There are nutrients that the whole grains have.

You are also correct that the type of phosphorus affects how much is taken up. Animal sources are more readily absorbed than plant PO4. Certainly a discussion worthy of your medical team.

I believe that there is connection between PO4 and exercise and muscle mass. I have seen one article that lays the groundwork for that connection, but they didn’t connect the dots. I wish I could give you more than my own personal theory on that, but I believe it is a factor in the equation. Hopefully someone someday will look at that issue, but in the mean time, I am going to keep up with my exercise, once I get some iron back in my system. Just made the appointment for iron infusion next week, I really need a load of iron right now.

So great question and don’t slow down. You are really learning a lot. We are going to have to put you to work writing your own articles soon.

God bless,

Peter

I reread your post and forgot to mention about pasta. I LOVE pasta with Marinara sauce. Before I started dialysis, if my wife asked, the answer was always spaghetti, always.

When I started on the NxStage and had to increase my potassium because of the 1K bath, guess what I asked for almost every day. My wife loves it since she can whip up a batch that lasts almosts a week at a time, well 5 days anyway, and feeding the bum as she calls it becomes quite easy. I do appreciate my wife.

After eating pasta almost every day, my cholesterol and triglycerides shot through the moon. So, now my staple is beef stew with tomato sauce instead of just plain broth. It is unique to the Philippines but wow, is it good. I get my vegetables and my protein in one big pot. Once again, once made, my wife just heats up the left overs that get better every day.

So pasta, is a big no no for all of us and you should tread softly unless you use the whole grain pastas which just ruins the taste of my marinara sauce in my opinion. So, I get an occassional slice of pizza which has too much salt, so I don’t do that very often, lazagna was a very common meal over the holidays at my wife’s friends which isn’t really good for me, but all things in moderation.

The take home message is be very careful with K+ which can kill quickly and PO4/Ca which kills slowly. Na is always to be limited period. The good news is once you start dialysis daily, you can eat a whole lot more than you are right now. Sounds strange to have a reason to look forward to dialysis, but with daily dialysis, that is a bonus that we all enjoy who are at home.

Take care and keep up the study, I am going to have to go back to school to stay ahead of you, Dori, what do you recommend?

Interesting that you noted the increase in your cholesterol and triglycerides with so much pasta, Peter. Recent studies have been finding that it’s starches that cause these increases–not fat, as was believed previously. Think about it, though. When they want to fatten up cattle to “finish” them for market, what do they feed them? Corn. Not fat. (If fat would make cattle fat, they would use it. It doesn’t.)

Grains and legumes have antinutrients that can deplete the body of other essential nutrients. (http://en.wikipedia.org/wiki/Antinutrient). I don’t eat either one. :slight_smile: I know everyone thinks these are “healthy.” But that’s not necessarily the case. OTOH, I should warn you that I have ZERO training in nutrition. Strictly an amateur who reads a lot & is trying not to get type 2 diabetes like my dad has.

[QUOTE=Dori Schatell;20477]Interesting that you noted the increase in your cholesterol and triglycerides with so much pasta, Peter. Recent studies have been finding that it’s starches that cause these increases–not fat, as was believed previously. Think about it, though. When they want to fatten up cattle to “finish” them for market, what do they feed them? Corn. Not fat. (If fat would make cattle fat, they would use it. It doesn’t.)

Grains and legumes have antinutrients that can deplete the body of other essential nutrients. (http://en.wikipedia.org/wiki/Antinutrient). I don’t eat either one. :slight_smile: I know everyone thinks these are “healthy.” But that’s not necessarily the case. OTOH, I should warn you that I have ZERO training in nutrition. Strictly an amateur who reads a lot & is trying not to get type 2 diabetes like my dad has.[/QUOTE]

My wife gave up rice 6 months ago and has lost 20 pounds as of two days ago, that with a WHOLE lot of exercise that it is. She started to develop elevated blood sugars, never to the point of diabetes, but it does run in her family. I scared her enough that she has really got a handle on it now. Unfortunately, it is a lifetime battle that doesn’t stop or go away. Nevertheless, we have both learned our lessons with our favorite starches. Too bad, but I still get a little bit every once in a while. I guess that there is also eggplant parmasian without much of the parmiasian it is fine.

Sugar in any form–including rice, corn, wheat, potatoes–is best avoided by those of us who have a genetic predisposition to type 2 diabetes. 90% of it is preventable with diet and exercise. I’m appalled when I hear from friends who have type 1 and are on insulin pumps that they are told to eat 160 grams of carbs a day. I try for 50 or less!

Re K, a couple of years ago, I was just returning home from my daily 2 mile walk feeling all virtuous when I heard the phone ringing. It was my neph’s nurse calling to tell me that there had been a sudden spike in my K to 6.1; I knew how dangerous this could be. So after a lot of emergency phone calls, I was put on 10 gr sodium bicarb…that’s 8 big tablets A DAY. My neph had advised me to ADD SALT to my diet to combat an upwardly creeping K level. I never thought I’d hear a doc telling me to add salt, of all things. Just goes to show how CKD can affect different people in weirdly different ways. Fortunately, my K is better controlled now, but geez…8 sod.bicarb tabs each day. blech.

There could be a case made for how bad any particular food can be for you. My general rule is no processed food, avoid the foods really high in PO4 and K, no sugar (don’t like sweets anway) and everything else in moderation. Half a glass of red wine when I get good news from my neph.

This is a very interesting thread. A lot of patients talk about the counterintuitive aspect of the renal diet - white bread instead of wheat bread, white rice instead of brown rice, and a restriction on fruits and veggies. Even though these foods are considered “healthy” for the regualr population, they are not so healthy for people with kidney problems. The level of restriction, of course, depends on each patient’s individual lab results. Rye bread is can be an acceptable substitute for wheat bread and is a nice alternative to white bread.

Legumes and beans can be kind of tricky because they contain both potassium AND phosphorus. Some studies have shown that vegetarian protein sources such as beans and tofu are safer for the kidneys than animal protein. I think choosing a variety of foods that are reasonable in terms of potassium and phosphorus is a good principle to follow. Go for both meat and vegetarian meals. Follow-up with your renal dietitian to make sure you are staying on track.

I know it is not an easy diet to follow. Your commitment and interest in learning are really important. Keep up the good work!

LeeAnn Smith Weintraub, MPH, RD

The reason it is not an easy diet to follow is because generally speaking, it is too often taught in terms of what to avoid rather than in terms on what to eat to maintain health. Over time, instead of seeing food as fuel and as nourishment, food becomes the enemy. Food is important in human society…we use it as a conduit to celebration, comfort and even grief. Food is heritage. When you deny people food, you deny them of more than just potassium and phosphorus. So I’d really like to see more of an emphasis on what renal patients CAN eat and enjoy.

I personally have reached the point that I simply do not enjoy foods that I know are bad for me. I was down south for Thanksgiving, and even though my family knew about my dietary restrictions, they didn’t understand them, the result being that there was not one single “safe” food. Butter beans, black eyed peas, pecan pie, mashed potatoes, sweet potatoes…sheer assassination by food! This is the food of my family, my heritage, my culture. I hate being precious about food. I dislike the whole weasly mindset of “oooh, I can’t eat that because of my delicate state, oooh.” So, I had small spoonfuls of each, kept my mouth shut and vowed to compensate by being extra vigilant for the rest of the week. But it has taken me years to get to the point where I can live fairly happily with the diet. The real tricks are 1. watch your portions and learn to be happy with a mere occasional spoonful of the outlawed treat, 2. pay attention to your labs so that you can learn how much you can “cheat”, and 3. learn to substitute and learn to like more of a variety of foods. I may not be able to eat oranges and bananas, but give me strawberries and grapes and I’m perfectly happy. I wish my renal dietician had taught me these three tips the first time I met with her.

OK, I don’t mean to put anyone on the spot, but I’m going to put you on the spot! Being CKD4, I’ve been told to limit my protein intake. With that in mind, if I had the choice between a cup of lentils and a 3 oz portion of fish (no creamy sauce), which would be safest in terms of limiting protein and phosphorus?

I think this is a really good question. A 1/2 cup of lentils has a very similar level of phosphorus as a 3 ounce portion of fish. However, if you were comparing lentils and beef - lentils are lower in phosphorus. There has been some studies that have come out recently showing benefit of a vegetarian diet for individuals with chronic kidney disease when it comes to controlling phosphorus. Here is a link to one of those studies: http://cjasn.asnjournals.org/content/early/2010/12/23/CJN.05040610.abstract. However, it is important to remember that fish contains healthy oils that are not easily obtained from plant foods alone.

Dear MooseMom, only your medical team can prescribe your specific diet by medical-legal guidelines. You may wish to discuss different strategies with them however that may be beneficial. Low protein diets have shown reduction in progression and perhaps even improved mortality, but that is offset by the protein-calory malnutrion complex and muscle wasting that is also common to CKD. A recent study from Tufts used weight training to help maintain muscle mass:

VITAL SIGNS: EXERCISE; Kidney Patients Maintain Their Muscle

Low-protein diets can help slow the progression of kidney disease, but they can make the muscle wasting that the disease causes even worse. Now a study has found that weight training can help these patients maintain or increase their muscle mass.

Proteins are hard for the kidneys to filter, so reducing the amount patients eat can be helpful, said the study’s lead researcher, Dr. Carmen Castaneda of Tufts University. But she said this approach was rarely used in practice, in part because of concerns that it could speed the loss of muscle.

http://www.nytimes.com/2001/12/25/health/vital-signs-exercise-kidney-patients-maintain-their-muscle.html

As in many aspects of CKD care, finding the right balance for your own clinical situation requires close work with your medical team for optimal outcomes. The more you learn on your own, the more informed and better questions you will have for your team.

I hope this information is useful to you and your team.

I do understand that CKD affects people in different way and that it is important to tailor your diet/exercise regimen/treatment plan to your specific needs. But I have been avoiding beans like the plague, and I am not comfortable with completely eliminating any food that might have other nutritional benefits. I don’t want to be malnourished if I don’t have to be. I do enjoy strength training and have no intention of wasting away. Again, I suppose it is a matter of moderation and vigilance. Thanks for all of the advice and information.

If you soak lentils properly, you can remove most of the lectins and phytic acid (antinutrients http://wholehealthsource.blogspot.com/2008/05/real-food-vii-lentils.html)–or discard the liquid and rinse them if you use the canned ones. :slight_smile:

Here’s a link that might further muddy the waters…

http://www.renalbusiness.com/news/2010/12/veggie-diet-lowers-phosphorus-in-ckd-patients.aspx?utm_source=twitterfeed&utm_medium=twitter&utm_campaign=Feed:+RBTSiteFeed+(Renal+Business+Today+Site+Wide+Content+Feed)&utm_content=Twitter

I’m not sure why they didn’t think to test potassium levels…

It would help to know exactly what this vegetarian diet entailed. We get this journal, but the December issue hasn’t arrived yet, so all we have is the abstract.

Here’s an interesting database from the US Dept of Agriculture that lists nutrients in foods sorted by alphabetically by the name of the food or by amount of the nutrient in the food. It has lists for protein, phosphorus, potassium, sodium, carbohydrates, sugar, etc. The reports are in PDF so you can do a search on the page or print the page or whole report. Perhaps this will help you know which foods are better choices. Moosemom, maybe looking at these lists will help you help your family know foods that are safe for you to eat. I’m sure they would want make sure they provided something you could eat.

http://www.ars.usda.gov/Main/docs.htm?docid=15869

Beth, I have so many lists from so many sources that I am going to have to make a list of all of my lists. But read this…

and this…

Maybe we should be rethinking/reevaluating dietary advice re phosphorus. It seems to be more nuanced than previously thought. My mother became undernourished to the point where her team told her to eat any damn thing she wanted as long as she upped her caloric intake. It should have never come to that.

PS…I have a rotten cold and had a few sips of Coke to cut through the phlegm, and it was wonderful! It was the first Coke I’d had in 6 years! Naughty me.

This is hopefully not being intrusive to LeeAnn … for I am attempting to give an answer on another consultants page and on a topic about which they know far more than I … but, hopefully, LeeAnn will not think ill of me for doing so. While I have minimal expertise in the area, it is one on which I have formed a number of [probably wrong] views over my 40 years in the kidney business. I just couldnt resist!

Premise:

I want my patients - as much as is possible - to eat well!

I worry that too much ‘eat this, dont eat that’ instruction bedevils CKD and CKD patients. We put the fear of God into our patients over diet - and the consequences of too much or too little of this and that … Na+, K+, PO4, Ca++ and protein being chief of these … when, for most, and within reason and commonsense, I am still not sure whether we may do more harm through rules, restriction and limited diets than we do good.

Better dialysis … here I go again, I know … not dietary draconianism, should be the way forward.

No dialysis patient should have to eat other than a normal balanced diet, well protein’d, well everything’d … and yet they must!

Why? … because, in brief, we fail them.

OK … that’s the heresy (to a point) … but let me explain.

Protein:

I have always been of the view that as regards protein, complex animal proteins are more of a ‘renal’ issue (and experimental data supports this view) than are the less complex vegetable proteins – and in this regard, where protein restriction is advised, I try to down-size animal and up-size fish and vegetable-sourced protein – ie: I tell me patients they can eat fish and veggies more often in a week but less (though not nil) meat each week!

Protein restriction as a mechanism to ‘lessen the metabolite load’ – especially urea and other nitrogenous waste levels – has come and gone as a ‘fashion’ over the last 50 years. Giordano and Giovannetti first seriously influenced thinking about protein restriction before the days of maintenance dialysis (the 50’s) but then came dialysis and it was viewed as preferable to have a well-nourished patient, unwasted by severe protein restriction, entering dialysis a little sooner but in better health than trying to delay dialysis (in my view spuriously) through protein restriction and then having a muscle-wasted scarecrow present a few weeks/months later.

In the last 50 years, dietary protein restriction has come and gone, then come, then gone again … its fashion waxing and waning. I, for one, think it largely unhelpful to protein restrict – except perhaps to limits phosphate intake …and again, as pointed out by others already here, the phosphate content of protein foods varies too. I have been in the ‘I don’t restrict protein camp’ – perhaps with the caveat that I also don’t advise a protein dietary glut either … rather, I upsize fish and veggie-based protein and downsize meat-derived protein while allowing, not barring, both. We need somewhere around 0.75gm/kg/day protein to sustain a nice protein balance. Most/many western diets (perhaps above all the US diet) contains much more protein than this. So … rather than limiting protein, I like to ‘dial’ a protein intake that gives plenty for a gentle positive balance while avoiding its over-ingestion.

One problem with protein is that it is also a key source of phosphate.

Here comes the major heresy …

Phosphate:

I think we have over-cooked the dangers of phosphate (and potassium falls into the same boat) … driven NOT by the (wrongly) perceived dietary naughtiness (some use here a word I abhor … non-compliance) on the part of our patients but by inadequacy of the dialysis inadequacy programs we deliver!

So … what am I saying here? I am saying that it is NOT our patients’ failure us by failing to adhere to often impractical (and commonly costly) dietary restrictions that causes all the trouble… it is us failing our patients by delivering inadequate dialysis. We are at fault, not the diet, not the patient, not the dietitian … but the dialysis prescription we prescribe!

Longer, more frequent dialysis has taught us much. It has taught us that our patients can eat what they like! Clearly, I mean here a nutritious diet (not fast foods, not fatty crap, not prepared soft drinks - Coke and its friends are phosphate soups) … but good food, varied food, fresh and of any type you like should be possible for all dialysis patients, if only we provided them with good dialysis!

I have yet to see one of our NHD patients in phosphate excess … in potassium excess … in urea or nitrogen excess … and they eat like they should – normally.

And, they take no binders either.

Phosphate excess (once dialysis starts) should be a thing of the past. It isn’t … but that’s because of our (medical) failing, not your (patient) failing.

Our collective struggle with binders, sevelamer, lanthanum (have you ever seen the ‘rare earth’ abdominal xrays that go with lanthanum?) … etc etc … and the difficulties our patients have with taking them … this struggle is the result of poor dialysis.

Potassium:

The same applies (pretty much the same) to potassium as it does to phosphate … though here, some medications can be also contributory to rising K+ levels. I don’t blanche, I must say, at K+ up to 6 or so. Certainly dialysis patients develop some degree of apparent ‘tolerance’ of not only a potassium of 6+ but also of the rapid serum shifts that occur in potassium during dialysis. Why? Well … potassium is a largely intra-cellular beast! Though we can alter (sometimes markedly) the serum potassium during dialysis, the intracellular potassium is much less affected. We sometime see this when, on return to the ward after dialysis, an inpatient whose potassium is 2.8 post dialysis when it was 6.5 prior, is given potassium by an ill-advised junior doctor to treat the ‘low’ potassium level when, if he/she had just waited 30 minutes or so and repeated the level, the potassium would have equilibrated with the cellular level and bounced to 4!

I am not trying to be blasé about potassium … just I don’t worry about it quite so obsessively as some might.

Furthermore, with better dialysis, potassium issues disappear. Indeed we have had, on occasions, to ADD potassium to the diet and/or medication lists of patents on longer and more frequent dialysis until dietary freedom ‘catches up’ with the better dialysis and restrictions previously ingrained are slowly lost as the diet returns to normal.

What matters most:

Weight management to ‘ideal’ or target weight … and this is nowhere more important than in the diabetic dialysis patient … and exercise.

These are easy to say - but never easy to achieve … especially for weight control in the overweight patients.

These, however, should be the subject of a different discussion for LeeAnn to supervise.

Summary

I am not trying to be dismissive of diet here - it matters for almost all dialysis patients … for almost all dialysis patients are being underdialysed and therefore must adhere to strict limitations on the food they eat to compensate for our failure to better manage them.

A restricted diet is inescapabale, inevitable, and essential for almost all dialysis patients - short of the lucky few who seek (and find) good dialysis.

But … a dialysis patient should be able to eat what he/she wants, without fear of over-this or under-that. At the moment, sadly, only those who can access enough evenly-spaced hours of dialysis a week can achieve that.

For the rest - it is (sadly again) over to the pills, to the dietitian … and to sticks and threats.

There is one caveat to this. That is the (usually short) window of CKD5 prior to dialysis (assuming that that dialysis is good dialysis) when renal excretory control has been lost but dialysis control has not begun. That is a small window. It is rarely, in my experience, a long-enough time for major mischief to ensue - and it can be (and is) managed by medication and some dietary measures. But, once the eGFR falls <10 and dialysis is imminent or is started, the dietary measures of this brief period should be able to be relaxed as dialysis (good dialysis) takes over.

That we rarely reach that balance point is our failing … not yours.

Dr. Agar, your post makes so much sense, and I cannot find any flaw in your reasoning. I am baffled as to why anyone would willingly subject themselves to the heinous renal diet if they do not have to by choosing/having access to more frequent dialysis. But a lot of things in this world make no sense to me.

I have a couple of questions regarding phosphorus that may be extremely picky, but I’ve long been curious about a few things. We have started doing some food shopping at a little community/organic market in our small town, and there is a “cheese guy” who has some lovely items. I know that cheese is high in phosphorus but that cream cheese is safe for renal patients. I’ve also been instructed that feta cheese and brie cheese is acceptable in small amounts and that these cheeses are “safer” than harder cheeses. What is it about cream cheese that makes it “safe” and hard cheese that makes it “dangerous”? Is it something about the ageing process perhaps? Anyone know?

Dried fruit…what makes dried fruit “dangerous”? Are there phosphates used in the drying process or something? What makes fresh blueberries OK but makes dried blueberries perilous, phosphorically speaking?

Again, these are not urgent questions, but I’ve always been curious about these two things. Thanks for any enlightenment.