Confused About Diet for Stage 3 or 4 Chronic Kidney Disease (CKD)

Posted by wietop @wietop, Dec 13, 2017

I was diagnosed with Stage 3 CKD four years ago, but my doctor didn’t tell me. When he retired and I had to find a new doctor is when I found out. I’m new to this and completely confused when it comes to diet. I am currently eating a sandwich for lunch, made with Ezekiel Low-Sodium bread, which is sprouted whole grain bread. In my research I have found some sites that say never eat whole grain bread, while others say you can eat it with no problem. My doctor has told me I don’t need to change my diet, but, as you can imagine, my trust factor is pretty low right now. I’m trying to find some solid information about which breads I should avoid and which ones are okay.

@polly08 Nutritional yeast seems to be kidney friendly and has 20 cal, negligible amounts of potassium and phosphorus and 2 grams protein. This website might give you some ideas, although I don't think he wants to put bearded seal on the menu. https://nutritiondata.self.com/foods-000078000000121122123-w.html

REPLY
@kamama94

Here are some of the ingredients I use in many of my meals:

Morning Star Farms
Veggie Sausage Patties 120 mg K 107 mg P 260 mg Na
Grillers Original 130 mg K 124 mg P 260 mg Na
Chik’n Strips 110 mg K 105 mg P 510 mg Na
Meal Starters Grillers Crumbles 100 mg K 4 1 mg P 240 Na
America’s Original Veggie Dog 60 mg K 165 mg P 580 mg Na
America’s Original Corn Dog 60 mg K 139 mg P 500 mg Na

Go Veggie Cheese
Go Veggie cheddar & provolone flavor slices
10-15 mg K (0%) 180-200 mg P (11%) 200-240 mg Na
Vegan Cream Cheese 8 – 50 mg 40 – 50 mg

Daiya Cheese
Plain Cream Cheese Spread 5 mg K 20 mg P
Mozzarella Style Shreds 20 mg K 20 mg P
Cheddar Style Slices 15 mg K 20 mg P
Dairy-Free Homestyle Ranch Dressing 10 mg K 0 mg P

The tomato sauce I use (very sparingly) is a sodium free store brand but Hunt's also makes one.

Since I'm homebound (not related to CKD) I order all my groceries from a regional store, Hy-Vee, and either have them delivered or one of my caregivers picks them up.

I'm still having trouble posting links and have not heard back from any of the moderators but you could google Morningstar Farms, Go Veggie and Daiya to find their pages online, each has a tool to find where their products can be found in your area.

There are other brands of vegan and vegetarian meat and cheese substitutes but these are my favorites.

I would appreciate it if you could check my math and my values and correct any errors I might have made. Also, if you try a recipe and it doesn't work for you, feel free to tell me.

Happy cooking!

Jump to this post

Thank you so much for this list – My husband is newly diagnosed stage 3 – I do the cooking and everything we had been eating for a healthy diet is now on the "Don't List" – your list has been helpful while we begin to navigate this confusing and sometimes contradictory research on allowed foods. Btw, a nurse mentioned this to my husband- have yet to hear from his PC! Definitely switching doctors.

REPLY
@kathe

Thank you so much for this list – My husband is newly diagnosed stage 3 – I do the cooking and everything we had been eating for a healthy diet is now on the "Don't List" – your list has been helpful while we begin to navigate this confusing and sometimes contradictory research on allowed foods. Btw, a nurse mentioned this to my husband- have yet to hear from his PC! Definitely switching doctors.

Jump to this post

kathe @kathe, I want extend my Welcome to you. It must be a shock and a confusion to learn that the healthy diet that you have been on, is now on a "Don't List". I am sorry that I don't have experience to qualify me to add any dietary input for your husband's new diagnosis. However, the first thing that comes to mind, is to ask you if he is being treated by a kidney specialist (Nephrologist)? or a Primary Care Physician (PCP)? Is you husband scheduled for a follow-up of any sort? Labs?
A Nephrologist should be able to refer you for nutrition counseling to help you meet your husband"s dietary needs.

REPLY

This is for everyone and even though it's copyrighted anyone may share it or reproduce it because I believe information should be free:

Nutrient values listed in my upcoming, free-to-everyone, cookbook come primarily from the USDA, the National Institutes of Health and/or product distributors, manufacturers, and grocers, including my local grocer Hy-Vee®, Inc.

Daily values for stages 1-3 chronic kidney disease (CKD) recommended by the NIH are 800-1200 mg phosphorus, 1500-2700 mg potassium, 2000-3000 mg sodium, and 0.36 grams of protein per pound of body weight. Some recommend even less phosphorus, 700-800 mg a day, others less protein, as little as 35 grams daily, perhaps perhaps lower. The American Heart Association suggests using less sodium, 1500 mg or 1.5 grams a day.

Ingredient values found in the cookbook can be changed by cooking, sometimes higher, sometimes lower. Because manufacturers also can change ingredients or amounts which then alter values from what someone previously might have read on product packages, it’s good to check labels before each purchase, maybe even to contact the company. At present food producers are not required to list phosphorus content on labels and many do not. But while some don’t assay phosphorus, quite a few do know how much an item has and usually will share that information with the consumer when asked.

Also, try to find out how certain ingredients are processed. If a label says vegan and is made with unbleached flour, it may very well be vegan but white flour sometimes is bleached using bone char. One brand of refrigerated pie crust claims to be “vegetable” yet whey from processing cheese is listed among the ingredients. A certain kind of tortilla the manufacturer says is vegan contains enzymes which could be either plant or animal derived. The only way to learn which is to inquire.

Soaking in water at least 2 hours before actual cooking pulls potassium, some sodium, perhaps even phosphorus, out of food, which should be drained again. Peel, wash, cut large or dense raw vegetables into thin slices, rinse well in warm water then soak in 10 times more warm water than vegetables for 2 hours, perhaps overnight & changing water every 4 hours. Drain, rinse again in warm water, cook in 5 times more water than volume of ingredients then drain once more. Boiling high-potassium foods (like peeled potatoes, sweet potatoes, carrots, beets, winter squash, and rutabagas) then draining again is said to leach up to 41% of the potassium as well as some sodium and phosphorus. Mushrooms, cauliflower, and frozen greens, which most people with kidney disease are told to eat sparingly as well (if at all,) can be processed this way, too. But some items might become quite soft, even mushy – fine for soups if not on fluid restriction but not so good for stir fry. According to quite a few experts, yes, you can have potatoes and potato products BUT in VERY SMALL amounts and ONLY OCCASIONALLY and leach them first if they have not already been leached by the manufacturer in processing.

If you have additional information or want to make any corrections, please share with me.

REPLY
@kamama94

This is for everyone and even though it's copyrighted anyone may share it or reproduce it because I believe information should be free:

Nutrient values listed in my upcoming, free-to-everyone, cookbook come primarily from the USDA, the National Institutes of Health and/or product distributors, manufacturers, and grocers, including my local grocer Hy-Vee®, Inc.

Daily values for stages 1-3 chronic kidney disease (CKD) recommended by the NIH are 800-1200 mg phosphorus, 1500-2700 mg potassium, 2000-3000 mg sodium, and 0.36 grams of protein per pound of body weight. Some recommend even less phosphorus, 700-800 mg a day, others less protein, as little as 35 grams daily, perhaps perhaps lower. The American Heart Association suggests using less sodium, 1500 mg or 1.5 grams a day.

Ingredient values found in the cookbook can be changed by cooking, sometimes higher, sometimes lower. Because manufacturers also can change ingredients or amounts which then alter values from what someone previously might have read on product packages, it’s good to check labels before each purchase, maybe even to contact the company. At present food producers are not required to list phosphorus content on labels and many do not. But while some don’t assay phosphorus, quite a few do know how much an item has and usually will share that information with the consumer when asked.

Also, try to find out how certain ingredients are processed. If a label says vegan and is made with unbleached flour, it may very well be vegan but white flour sometimes is bleached using bone char. One brand of refrigerated pie crust claims to be “vegetable” yet whey from processing cheese is listed among the ingredients. A certain kind of tortilla the manufacturer says is vegan contains enzymes which could be either plant or animal derived. The only way to learn which is to inquire.

Soaking in water at least 2 hours before actual cooking pulls potassium, some sodium, perhaps even phosphorus, out of food, which should be drained again. Peel, wash, cut large or dense raw vegetables into thin slices, rinse well in warm water then soak in 10 times more warm water than vegetables for 2 hours, perhaps overnight & changing water every 4 hours. Drain, rinse again in warm water, cook in 5 times more water than volume of ingredients then drain once more. Boiling high-potassium foods (like peeled potatoes, sweet potatoes, carrots, beets, winter squash, and rutabagas) then draining again is said to leach up to 41% of the potassium as well as some sodium and phosphorus. Mushrooms, cauliflower, and frozen greens, which most people with kidney disease are told to eat sparingly as well (if at all,) can be processed this way, too. But some items might become quite soft, even mushy – fine for soups if not on fluid restriction but not so good for stir fry. According to quite a few experts, yes, you can have potatoes and potato products BUT in VERY SMALL amounts and ONLY OCCASIONALLY and leach them first if they have not already been leached by the manufacturer in processing.

If you have additional information or want to make any corrections, please share with me.

Jump to this post

Thank you so much, it's like playing "wack-a-mole" when trying to plan meals around your "CKD", especially when your family has to suffer along with you our you with them.

REPLY

The cookbook is close to being finished. I would like to share it but don't think I can post 90 pages of recipes here. If anybody wants a copy of the final rough draft I can send it to a regular email address. Please know this isn't the final form it will take. My primary has not vetted it yet or submitted it to the medical school for review. Also, please test any or all of the recipes and tell me if you thought the dish was terrible, okay or good. And feel free to correct my math and nutrient values.

REPLY
@kamama94

The cookbook is close to being finished. I would like to share it but don't think I can post 90 pages of recipes here. If anybody wants a copy of the final rough draft I can send it to a regular email address. Please know this isn't the final form it will take. My primary has not vetted it yet or submitted it to the medical school for review. Also, please test any or all of the recipes and tell me if you thought the dish was terrible, okay or good. And feel free to correct my math and nutrient values.

Jump to this post

@kamama and friends. Please do not post your emails on this public format. It is for your protection.
There is a Private Message (envelope symbol) top of this page for that purpose.

REPLY
@kamama94

The cookbook is close to being finished. I would like to share it but don't think I can post 90 pages of recipes here. If anybody wants a copy of the final rough draft I can send it to a regular email address. Please know this isn't the final form it will take. My primary has not vetted it yet or submitted it to the medical school for review. Also, please test any or all of the recipes and tell me if you thought the dish was terrible, okay or good. And feel free to correct my math and nutrient values.

Jump to this post

Kamama,
You'll notice that I removed your email address. As Rosemary mentioned, it is safer to use private messaging to share contact information.

To share your draft book with members, you have the option to upload the book as a PDF to a post. Here's how.
1. Click REPLY.
2. Write a message.
3. Click Photos/Files
4. Choose the file from your computer.
5. Click REPLY

REPLY

I would say at your stage to watch protein intake. Limit red meat- eat mostly chicken or fish. Give up coffee. Also watch phosporus intake which is found in dairy, legumes, and organ meat. You want to be as easy on your kidneys as possible. I went all the way to stage5 before my transplant and found that lowering the phosphorus really helped how I felt and functioned. At stage 3 – symptoms weren't really obvious to me.

REPLY
@kimberlyharris

I would say at your stage to watch protein intake. Limit red meat- eat mostly chicken or fish. Give up coffee. Also watch phosporus intake which is found in dairy, legumes, and organ meat. You want to be as easy on your kidneys as possible. I went all the way to stage5 before my transplant and found that lowering the phosphorus really helped how I felt and functioned. At stage 3 – symptoms weren't really obvious to me.

Jump to this post

But of course, I am not a medical professional. So, run it by your doctor, or nutritionist.

REPLY

Sounds kind of like me. I don't know how long I've had CKD. I go to the VA. I had Salmonella back in Oct 2018. I finally ended up in the hospital on Nov. 28 2018 with an UTI. My primary doctor had no idea what was wrong with me.
She noticed my Iron and Vitamin D going down a couple of years ago. I am 72 years old. She seen protein in my Urine in Nov. 2018 and didn't know what to do. WBC said clumps in Urine. Which means there's an infection. In May another Doctor said I had 37% Kidney function. Again Urine was filed with WBC and again no mention of UTI. VA don't know what they are doing.

REPLY
@crazyelf

Sounds kind of like me. I don't know how long I've had CKD. I go to the VA. I had Salmonella back in Oct 2018. I finally ended up in the hospital on Nov. 28 2018 with an UTI. My primary doctor had no idea what was wrong with me.
She noticed my Iron and Vitamin D going down a couple of years ago. I am 72 years old. She seen protein in my Urine in Nov. 2018 and didn't know what to do. WBC said clumps in Urine. Which means there's an infection. In May another Doctor said I had 37% Kidney function. Again Urine was filed with WBC and again no mention of UTI. VA don't know what they are doing.

Jump to this post

Hi @crazyelf, what stage of chronic kidney disease do you have? How are you doing with managing it?

REPLY
@kimberlyharris

I would say at your stage to watch protein intake. Limit red meat- eat mostly chicken or fish. Give up coffee. Also watch phosporus intake which is found in dairy, legumes, and organ meat. You want to be as easy on your kidneys as possible. I went all the way to stage5 before my transplant and found that lowering the phosphorus really helped how I felt and functioned. At stage 3 – symptoms weren't really obvious to me.

Jump to this post

I mostly agree. I suggest going vegan but certainly stay away from red meat and processed foods and get your protein from plant-based sources. Phosphorous and potassium intake should be guided by what your labs tell you. I am stage IV and my phosphorous and potassium are normal. In fact, while I was on dialysis they were never out of range. So, I'm hot sure blanket statements apply for everyone. Regarding coffee, we just disagree. Here is what NKF says about coffee — http://bit.ly/2Yx6H2M. I drink about four cups a day with nothing added. In fact, this renal site suggests it can be helpful. http://bit.ly/2YrVmkM

REPLY

Thank you. I have made homemade Tortillas that requires butter instead of lard. I've been wanting to make them with no salt butter. So I think I will try this for my husband.

REPLY
@kamama94

The cookbook is close to being finished. I would like to share it but don't think I can post 90 pages of recipes here. If anybody wants a copy of the final rough draft I can send it to a regular email address. Please know this isn't the final form it will take. My primary has not vetted it yet or submitted it to the medical school for review. Also, please test any or all of the recipes and tell me if you thought the dish was terrible, okay or good. And feel free to correct my math and nutrient values.

Jump to this post

Send it to me via personal message.
I would love to have the cook book. Thank you so much.

REPLY
Please login or register to post a reply.