Calling all Vegans on Dialysis!

From time to time, I get messages from people on dialysis who want to know more about how to eat vegan while on dialysis. I send them to this short page of resources (link). But, I have never had any sort of ongoing communication with a vegan on dialysis.

I thought it could be helpful to start a page on this blog where vegans on dialysis can post about their experience and any hints they have. So if you are out there, please let us know how you’re doing and what you have learned.

Thank you!

31 Responses to “Calling all Vegans on Dialysis!”

  1. Beverly Says:

    Thanks for starting this page. Any dialysis patients out there? Those who do not need to lose weight.

    1. How do you get enough protein? As you know protein is VERY important because you lose protein during dialysis treatments. Cutting out your meats wipes out the good protein intake.

    2. Soy is high in phosphorus and potassium. Your binders may help control some of the phosphorus but all the beans and nuts are suppose to be avoided in the diet. You cannot have too much potassium. That could bring on sudden death of stopping your heart. A lot of the fruits and vegetables are very high in potassium.

    Very hard to be a dialysis vegan:
    Need Protein
    Limit Whole Grains
    Limit Phosphorus
    Limit Potassium
    Avoid Salt
    Limit Fluids

  2. Peggie Says:

    I had been happily learning and eating a vegan diet for just under a year when my kidneys completely failed (not due to the diet but to long-term chronic health issues), and I was catapulted into the dialysis world a year ago this month.

    Out of many culture shocks one of the biggest was the diet. I’d already been on a “renal diet” which is quite different from a dialysis diet. In fact it’s one of my pet peeves on this year long journey that so often I’m referred to a renal diet, or as when I spent some time in a hospital and was put on a “renal diet.” Many of the foods were not good for me, and they wouldn’t allow me to have others that would have been fine. A dialysis diet is NOT the same as a renal diet.

    Once on dialysis, I was amazed that dieticians had become a big part of my healthcare team when they never had been in my 63 years for any other health problem. The diet was strongly emphasized, with dire predictions if not followed. At the same time it was very confusing. I was given different handouts by various dietician which often contradicted one another. At first it seemed they wanted to make me anorexic: “eat nothing!”

    Since I’d already been eating vegan, certain parts of the diet were not difficult, such as avoiding dairy (because of the phosphorous). But other parts were shocking, such as avoiding dark green leafy vegies (my favorite!) and quinoa which I’d just learned to love and use in many ways… very high in protein, but also alas! in potassium.

    No (or little) whole grains, no (or very little) pulses, no potatoes, no avocados… the verboten seemed endless.

    I found a vegan protein powder made by WF. It’s soy-based which some say is problematic, but I can’t otherwise see how to get the amount of protein that’s recommended. I eat it every day, but I have also started adding back some animal proteins.

    Another problem I have (which I’ve heard is common in dialysis patients) is a weak appetite. For me I think it’s partly due to having such a limited diet. So that makes it even more difficult to get enough protein. So now I eat eggs and chicken and a little fish. Always organic and free-range and wild but still….

    I call the dialysis diet the Perverse Diet. Everything you learned and struggled to change about diet for forty years is now reversed. No whole grains, no leafy greens, not too much fluid, no pulses for vegetable protein, no or low salt.

    That’s where I am today. In the city where I live there are some fantastic vegan chefs. Lately I’ve been thinking about challenging them to come up with some dialysis menus.

  3. Beverly Says:

    Riding in the same boat as you.

    They do seem to have eased up on the potatoe issue. If you cut them up in little cubes and soak them in water overnight (changing the water a few times) they say that takes a lot of the potasium out.

    Did you find your protein levels were low because of the vegan diet and therfore had to put the chicken, fish and eggs back in the diet?

    Did you ever eat the veggie dogs and burgers? Most you buy at the store do not list potassium content and they say the soy based products do have a lot of potassium so it is scary eating these products with soy not knowing if you are overloading on potassium.

    This is new to me. Been a vegan for a week. Always have good labs so very nervous about the next round of bloodwork due to yanking out all the meats and dairy. I can say it was a very nice surprise to find the rice milk taste good.

  4. Peggie Says:

    Nice to meet you, Beverly. Glad there’s plenty of room in this boat!

    I heard about the “dialyzing high-potassium vegies” early on. Since it’s a bit of trouble, for a long time I simply avoided them. But I often had a craving for potatoes. A couple weeks ago I finally followed the “soak, rinse, soak, rinse, cook in lots of water” method and cooked enough potatoes to make some mashed and a small potato salad. It was disappointing to me because I found they lost a lot of flavor. So I’m over potatoes, though once in a while the whiff of a nice baked potato comes out of nowhere, lol.

    My protein levels were not low, and I’ve managed to keep them within good range. Before dialysis, I made sure to get adequate protein on my vegan diet with pulses and quinoa, foods I can’t eat as much now because of the potassium levels. That’s why I felt the need to add back some animal protein… where else can I get enough protein.. the amazing quantities we need to get?

    Like I said before I feel the need for vegan chefs/dieticians to help us figure this out. I haven’t been able to find the protein in the amounts needed so that’s what I did. Don’t worry if your levels go down at first, you can always bring them back up.

    Thanks for communicating. I hope there’s more of us out here.

  5. Peggie Says:

    P.S.
    Forgot to say that I’ve never much eaten the veggie fake-meats. You have to be careful as a vegan…. many of them have cheese in them. And they’re often very high in sodium too. I ate a lot of tofu and tempeh as ‘meat substitutes’ as well as beans and quinoa. But now have to watch out for the potassium and phosphorous in those, so don’t eat as much.

  6. Jack Norris RD Says:

    > many of them have cheese in them.

    Gardenburgers that are served in restaurants often (or usually?) have cheese in them, but most fake meats do not contain cheese. Quite a few contain eggs, but avoiding them is as easy as reading the labels. Unfortunately, they are normally quite high in sodium. I would think that you could dailyze some of the sodium out of them, though. But there would still be phosphorus and possibly potassium.

    What about phosphorus binders? It might be that vegans on dialysis need to rely more on phosphorus binders, though you should have a doctor’s supervision. Here is some info on phosphate binders: http://bit.ly/qlveaU

  7. Guido Says:

    Hi, I hope, I can give some answers. First of all – sorry about my silly English ;)

    I’m 39 Year old, male, and make dialysis since January 2006. I make Peritonealdialyses (PD), witch is basically different from the conventional Haemodialysis (HD). I use a cycler (CCPD) at night at home. My therapy volume are 21l per night. My last Kt/V = 2.3!

    I’m vegan since end of 2009, before that – with a smooth transition – I eat mostly vegetarian.

    I have a short time job and I make lot of sport (~1x per week aerobic, ~1x per week running (up to half marathon), stair climbing (next competition next week ;) and ~1x per week pilates).

    So, what’s about protein? The target value is in border range (last serum values: urea=130 mg/dl, crea=16 mg/dl, albumin=3,5 g/dl)

    I eat plenty of soy product like tofu, soy drink, dimpling etc. but also pasta and wholemeal products (blood glucose = 72 mg/dk)

    Phosphorus is a great problem. I avoid nuts, chocolate, cakes, sweet or salty pastries, soda pop and alcohol. I have 3 different phosphorus binder. My laboratory values: 1.8-2.0 mmol/l

    My potassium is OK (5,9 mmol/l), but on PD hyperpotassemia is not relevant.

    Salt is also on PD not very relevant (139 mmol/l)

    The great vantage of the PD is to preserve diuresis, so I have not have to limit fluids.

    These values are very individual! This is definitely not representative, but I hope, I can motivate some concerned people.

    In conclusion: I think it is not difficult for dialysis patients (esp. PD) to life vegan. My personal most problems I have with drugs, because lots of them contains gelatin.

    Please ask, if you have more questions.

  8. Beverly Says:

    Guido said – In conclusion: I think it is not difficult for dialysis patients (esp. PD) to life vegan.
    It is for a hemodialysis patient. The sodium build up will cause high blood pressure, water retention which in turn makes leg swelling, shortness of breath. Many dialysis patients no longer urinate so all what goes in does not come out. It stores up and if for some reason you miss your next dialysis appointment you can be in serious trouble. The potassium build up could cause problems with the way your heart beats.

    Jack Norris said – What about phosphorus binders? Yes, those do help. To me, the phosphorus is the least to worry about. You can control the phos. with knowing what foods to not eat and taking binders with your meals. The good thing about the binders is it will as they are called bind the phosphorus and you will be able to get rid of some of the phos. when you go to the bathroom (#2) Unlike, the buildup of sodium and potassium which is rid by urinating and if you no longer go #1 then there is no way to rid your body of it other than dialysis. A lot of the fruits and vegetables are high in potassium so taking a lot of things out of the diet really does make it hard. Sometimes, it seems there is nothing to eat.

    As mentioned in my earlier post, I am a brand new vegan so throwing out the meat and treats is a hard transition. I am still finding all the vegan products but the high potassium content in soy based products concerns me very much. It is a guessing game because most nutrician facts listed on the products do not show the potassium content. Does anyone know which brands/products of soy based products are not so high in potassium?

    I have not tried tofu or tempeh. What does it taste like? How much do you eat?
    What the heck do you do with it? I see it at the store and looks like a slab of glue. I saw some that said firm.???

  9. Jack Norris RD Says:

    Beverly,

    Have you check out this link yet? http://www.jrnjournal.org/article/S1051-2276%2808%2900050-2/fulltext
    It was listed on this page: http://veganhealth.org/articles/kidney

    In my experience, some of the companies keep this info on hand and will share it with you if you write them.

    > I have not tried tofu or tempeh.

    You can Google it and find a plethora of info.

  10. Beverly Says:

    Hi Jack,

    Thank you very much for the link showing the nutrition facts. That is exactly what I was looking for. I did find the second link a few days ago. I have been googling like crazy. That’s how I found you :-)

  11. Guido Says:

    @Beverly,
    sodium and phosphate are too much in vegan patties and some dimplings. If you eat self cooked tofu or soy based products you do not eat to much phosphorus.
    I looked into my nutrition index: 100g tofu contains 110 mg phosphate, 100g hard cheese have 600 mg phosphate and a steak (100g) contains 180 mg phosphate.
    So I do not belief, that “pure” soy products are more bad than milk products or meat. But stay away from convenience foot, junk foot, foot with food additive or any kind of powder stuff – so it is also very easy to reduce sodium.

    There are tons of very delicious recipes in the web for cooking tofu. :)

    Your can considerably reduce high blood pressure and water retention with doing sport! Particularly running, aerobic, pilates, yoga … (also with HD)

    It is not difficult to reduce sodium (also with HD), if you only eat so much salt, how the body really need. Typically we use to much salt in our food.

    Only the potassium is a real problem for HD. But watering fresh vegetables and fruits reduce the potassium. You have to deal with potassium in every case, also if you feed vegetarian or omnivore. So it make no difference, if you are vegan. My nutrition index say about potassium: 100g tufo = 42 mg potassium, 100 fresh apple = 144 mg and 100g fresh boiled peeled potatoes = 341 mg potassium! So I think there is nothing to concern about soy based products.

    It is important to discuss the vegan diet with the doctor! It is possible, that he is disapprove the diet. Say it with blood test results or chance the doc!

  12. Beverly Says:

    Hi Guido,

    Is the nutrituion index you are looking at available on the internet?

  13. Guido Says:

    Yes, but it is in German: http://trainingstagebuch.org/nutrients/show/1073

  14. Beverly Says:

    Thank you. I used this page to translate it to english
    http://babelfish.yahoo.com/

  15. Beverly Says:

    Can someone give a list of snacks you eat that isn’t a piece of fruit?

  16. Guido Says:

    Take a look in a health food store/wholefood shop. They have much kind of vegan cakes and cookies made of oat, spelt or quinoa. There you can find soy based yogurt or candy bars too.
    Sometimes i like to eat this things, but I don’t have to forget the phosphorus binder.

  17. Peggie Says:

    Beverly, DaVita is the website on which I’ve found the most helpful information, although sometimes we still have to sort out what is “renal diet” from “pd diet’ from “dialysis diet.” This page has been particularly helpful to me:
    http://www.davita.com/kidney-disease/diet-and-nutrition/diet-basics/potassium,-phosphorus-and-the-dialysis-diet/e/5309
    And though of course we have to spend time learning the basics of the chemistry of it all, the truth is I eat food not its parts…. I mean, I eat certain vegies and fruits, snacks and protein foods, not potassium and phosphorous!
    So I tend to do as it shows here and simply avoid the really high (in phos & potass), & especially the “double jeopardy” foods.
    I don’t know how it is where you live… in our town there are many choices in the health food stores and even the “health food sections” of regular grocery stores. For snacks that are not fruit (which I do eat– berries and cherries and apples), I get chips made from veggies (a brand called Terra makes really good beet and sweet potato ones that I like a lot– with no salt). No-salt blue corn chips, rice cakes, other crackers or chips (just checking the sodium mainly). There’s a brand- not sure how far it’s sold– called Tofutti which offers outstanding cream cheese (called “Better than Cream Cheese) and sour cream (called Supreme Cream) alternatives. So I use those for spreads or dips for chips, crackers or vegies.
    I have posted on my fridge a list of the best veggies and fruits we *can* eat fairyl freely.
    Oh, if you want sweet, I find soy ice cream really good. Especially vanilla with berries on top. ;-D
    Protein is still the problem. Getting enough, that is, on a vegan diet. I’m told I need 80g per day. That is a huge amount, and I don’t even have that kind of appetite! Does anyone have any suggestions about that?
    Hi Guido, thanks for sharing so much information. From what I understand it’s not PD per se that protects from having to worry about phosphorous, it’s the longer time dialyzing. For instance, those who hemodialyze for 8 hours nocturnally also have more leeway with diet. I tried nocturnal for a month but could never adjust to sleeping in the center so I became sleep-deprived and a little crazy :-) Now I’m back to days but I run for 5 hours instead of 4 which also helps. I have excellent clearance and labs, but I do work at it. I prefer to run in center because I like to keep dialysis apart from my regular life. It feels more freeing to me. Personal choice.

  18. Beverly Says:

    Hi Peggie,

    Thanks for all the brand names and ideas. That will help in my search. You mentioned the soy ice cream. What brand is it? I would like to try some.

    I think I saw the brand Tofutti at the grocery store today but I don’t remember what the item was. I will check it out the next time I go. I got some cheese slices called Rice Vegan made by Galaxy Foods. I also got some Smart Bacon by Lightlife. They are described as bacon style strips (veggie protein strips). I am anxious to know what it taste like.

    Guido said: They have much kind of vegan cakes and cookies made of oat, spelt or quinoa. There you can find soy based yogurt or candy bars too.
    Do you know of any soy based yogurt or candy bars that we could eat.? What they are called and the brand name? I always want something sweet after I eat. Candy sure does sound good. I am trying to cut out all my sugars too.

    By the way, I live in Texas

  19. Beverly Says:

    I just found the tofutti website http://www.tofutti.com/
    I thought I hit the jackpot but was disappointed to see a lot of the products are made with hydrogenated oils and sugar. I am trying to cut both of these out of my diet. The hydrogenated oils are what sticks to the arteries. :-(

  20. Brenda Says:

    I am so glad to have found this blog & I will refer to it often. Reading what many of you had to say really answered a lot of my questions about being a vegan & on dialysis. Two years ago, my oldest son tried to get me to become a vegan. I told him about the restrictions of the minerals but he didn’t want to hear it. At the same time, he contracted cancer & thought that being a “vegan” would cure him. I knew that being a vegan would be a contradiction to a dialysis diet. However, he lost his battle to cancer. I wish that he was alive to read the messages that I read today. I also wish that he was alive so I could physically love him. I shall return to read what people have to say. Thanks for being here.

  21. Beverly Says:

    Hi Brenda,

    So sorry to hear about your son. May good memories keep you strong.

    Being doing the vegan/dialysis thing for a month now. First blood work comes back at the end of the week so I will know if I should continue or not. I’m sure I will but may have to tweak a few things.
    I’m not doing 100% vegan due to the worry of not getting enough protein so I do sneak in some chicken breast. I don’t think I can go back to eating hamburgers and all the bad stuff after doing this for a month. Animal proteins and trans fats scare me now.

    Feeling good :-)
    Beverly

  22. Jack Norris RD Says:

    New article:

    Plant-based diets in kidney disease management
    by Joan B. Hogan, RD, CSR, CD, CLT
    Dialysis & Transplantation
    Volume 40, Issue 9, pages 407–409, September 2011

    http://onlinelibrary.wiley.com/doi/10.1002/dat.20594/abstract

    Full article available by clicking “Get PDF” in the right sidebar under Article Tools.

    I didn’t think it it provided anything new, but if you read it and find it worthwhile, let me know and I can add it to the links on this page:
    http://veganhealth.org/articles/kidney

  23. Joan Hogan Says:

    I just found this blog and find it very interesting. As a renal dietitian and one that promotes plant based eating in my patients I am always interested in the experience vegetarian patients are having on dialysis. One suggestion I would have for those of you struggling with potassium control. If your potassium is climbing try backing off a little on some of your high potassium foods and then try gradually reintroducing them, slowing slowly of course, maybe around the time of the month labs are drawn. As one’s kidneys fail the digestive track can get more efficient at taking over in removing K+ however the adaptation may happen slowly. I am not saying this will always be a fix, but might be worth trying. Also once you achieve good potassium levels and good intake try to avoid big variations in your potassium intake. Keep consistent. If you need more protein from lower P0 and K+ sources try seitan. For a protein powder try rice powder. I recommend not taking in too much soy protein powders (over 20 g per day). Thank you Jack for starting this blog. I am also taking an informal survey on potassium and P04 intake of vegans and vegetarians. If anyone is interested in keeping a weeks worth of food records for me and what their labs are running please feel free to email me at vegitrd@gmail.com. Joan Hogan, author: The Vegetarian Diet for Kidney Disease.

  24. Jack Norris RD Says:

    Joan,

    As possibly the world’s expert on vegetarian diets and dialysis, thanks a lot for piping in!

  25. Beverly Says:

    Joan said “If your potassium is climbing try backing off a little on some of your high potassium foods and then try gradually reintroducing them, slowing of course, maybe around the time of the month labs are drawn. As one’s kidneys fail the digestive track can get more efficient at taking over in removing K+ however the adaptation may happen slowly.”

    I don’t think this is good advice for dialysis patients. Many no longer pee therefore the potassium can build up fast. You don’t play around with potassium and it is best to play it safe and go by the rules of avoiding high potassium foods. To suggest making adjustments around monthly labs is just playing a trick. The other 3 weeks of the month can get you in serious trouble if your potassium gets high.

    Just my 2 cents…..

  26. Jack Norris RD Says:

    Beverly,

    The potential typo that I pointed out in Joan’s post changes the meaning of her sentence quite a bit. I think she meant to say to slowly add potassium foods close to the time of your labs so that you will be able to immediately see if adding the foods is a problem. Her typo made it seem like she was saying the opposite.

  27. Joan Hogan Says:

    Jack yes my I meant “slowly.” Sorry about that. With regard to Beverly’s comments, having worked with dialysis patients for 30 years, each situation needs to be looked at individually. I really try to work work with my patients and find what we can safely add. I do not like to generalize “no beans” “no nuts”. Just like a dialysis treatment varies for each person in how much dialysis they need, pump speed, dialyzer to remove urea, length of dialsyis, so too needs and tolerances for K+ can vary as well. So if you are vegetarian and your potassium is dangerously high your dietitian should review your diet in detail with you, what you are eating and what you need to back off on. I will make suggestions on what I think is the cause and recommend avoiding certain foods and then wait and see a repeat K+ to make sure the K+ is coming back down(sometimes K+ can be up for non diet reasons) once we remove what we think is the problem. If after the K+ is normalized the patient is desiring some plant based options that were omitted I would add some again in smaller amounts, usually close to lab time so I get an immediate result. I never find this to be a problem. Then my patient knows what they can eat safely. I just feel a lot of healthy plant based foods are often totally eliminated unnecessarily and could often have been added back in in moderation. The key ideally is to work with your physician and dietitian. But I know most of my independent dialysis patient do their own thing. And so I like to make the above suggestions to those that do. I will also add, that very seldom do I see beans or nuts the cause of dangerously high potassium. In my 30 years of working with dialysis patient most almost all of my dangerously high K+ are due to watermelon, taro root or excess juice. Occasionally I have had dangerously high levels due to an unusual herb. Sometimes patients that eat a lot of meat and in addition eat beans will have higher levels. That is not to say I do not see high K+ due to beans and nuts, but not dangerously high and with some education from a well informed dietitian they can be educated accordingly in portion sizes, types of beans, etc. and re-introduce. I really support patients who are trying to eat healthy on dialysis. A lot of information for dialysis patients is promoting unhealthy food – meat, white rice, white bread, sweets, refined cereals etc. I like to help my patients eat as healthy as possible and include plant based proteins where ever possible. Hope this helps.

  28. Joan Hogan Says:

    i just proof read sorry for my typos. I am “writing on the fly”

  29. Veronica Says:

    Hi

    Thank you everyone for your input it really is a great
    support

    I’ve been doing dialysis for 10 years now. And I have been a vegan for the whole time. At first I had issues with potassium and phosphate but now there are certain foods I don’t eat banana’s and other foods like mango avocado etc I only eat a small piece. I’m off my binders as the doctor said I didn’t need it. I believe the vegan diet allows you to be more Health and energetic than going back to meat. Especially as kidneys are impaired the less stress by having too much protein is better for them. Dark leafy greens quinoa is great and you don’t have to have a huge amount. On dialysis days I take with me a juice made from 300g Kale (your top veg for protein) 3 apples ginger and lime. This has improved my blood work tremendously. I drink about 330ml only on those days. By juicing my body is getting the nutrients to my bloodstream quickly.

    I hope this is helpful

  30. Laura Says:

    Hi, I am in stage 3 CKD and am vegan. I am having trouble figuring out what are the best foods to eat for protein and meals in general trying to follow the renal diet. As of now I do eat beans and nuts mainly for protein which are high in potassium and phosphate. If anyone can give some advice about what you might have eaten prior to dialysis I would really appreciate it!

  31. Brett Says:

    Beans and nuts may be a good source of protein for those on dialysis if their potassium isn’t high. Athough these foods are typically high in phosphate, the organic form of phosphate from plants may be less absorbed int he GI (30%-50%) compared to animal sources of organic phosphate (40-60%) or inorganic phosphates found in prepared foods or colas (100% absorption).

    http://www.ncbi.nlm.nih.gov/pubmed/20404416

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