diet and recipes: I am confused. I have read... - Kidney Disease

Kidney Disease

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diet and recipes

OldTownhammock profile image
41 Replies

I am confused. I have read several books and all my favorite foods are on the list to avoid. When I look at recipes, they include ingredients such as avocadoes and artichokes, etc. A smoothie with a whole avocado in it? Anyone have a reliable cookbook?

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OldTownhammock profile image
OldTownhammock
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41 Replies
Bassetmommer profile image
BassetmommerNKF Ambassador

Your best bet is to see a dietician who can create a diet that works for you. But in the meantime, there are kidney recipes on the National Kidney Foundation website and aslo Davita. But Davita often include foods like beef and tomatoes in their recipes. And that's because their business is dialysis..... not protecting the kidneys.

OldTownhammock profile image
OldTownhammock in reply to Bassetmommer

Thank you. I will ask to see a dietician.

orangecity41 profile image
orangecity41NKF Ambassador in reply to Bassetmommer

I sometimes use the Davita recipes but make sure they fit my prescribed CKD diet, as have to watch protein, sodium, potassium and phosphorus.

OldTownhammock profile image
OldTownhammock in reply to orangecity41

Thank you. I have to watch the same

chicablue profile image
chicablue in reply to Bassetmommer

I no longer trust anything "Davita". My dr sent me to his Davita dietitian who told me to drink diet coke! No way, everybody these days knows better than that!

OldTownhammock profile image
OldTownhammock in reply to chicablue

I haven't been very impressed with the dieticians we were referred to when my husband was going through chemo. Very out of date

Hily profile image
Hily in reply to Bassetmommer

Kidney Care have produced a recipe booklet, it is full of beef and lentil recipes. Also wholewheat and brown rice . Does not seem very useful at all.

OldTownhammock profile image
OldTownhammock in reply to Bassetmommer

I contacted my G.P. (who I like quite a bit) and asked for a referral to a renal dietician. He answered that he didn't know of any other than those working with nephrologists who have patients awaiting a kidney or dialysis. Our town is pretty big. I guess they don't believe in diet

Bassetmommer profile image
BassetmommerNKF Ambassador in reply to OldTownhammock

Check and see if you local chapter of the National Kindey Foundation can make a recommendation. The dietician I use works out of the local NKF office.

OldTownhammock profile image
OldTownhammock in reply to Bassetmommer

I will try that. Thanks

OldTownhammock profile image
OldTownhammock in reply to Bassetmommer

Our town/city, tallahassee, doesn't have a NFK chapter

nonna70 profile image
nonna70

I heard yesterday that Kidney Kitchen from kidneyfund.org has a way to tailor recipes with what each of us needs. Sounds great but I've never used it.

Dana66CKD profile image
Dana66CKD in reply to nonna70

I will look into that. Could use an increased "repertoire" of the things I've been making, but still stay within my dietary needs.🙏🙂Thanks for sharing.!

PecanSandie profile image
PecanSandie

I have found that there is no reliable cook book since each of us has to avoid different things. There are a few things you can do right away. When you cook, skip the salt. At first it's a bit strange, but after a while you will hate tasting something that actually has salt in it! The only time you can't skip salt is if you bake bread (salt inhibits over-rising and is necessary, although you can try reducing how much you use). Use Diamond Crystal salt if you do use salt. It has way less sodium in it than other brands. Buy no-sodium or low sodium food products. They do exist but you have to be on the search at your supermarket. (I found no sodium tomato sauce for when I make pizza.) Cut the amount of meat you eat to two ounces. (I no longer eat red meat because I don't really enjoy it anymore.) There is a helpful we site on Facebook called Skip the Salt at the Low-Sodium Lounge: facebook.com/groups/1911192... Participants talk about the different lo-so, no-so foods they found.

orangecity41 profile image
orangecity41NKF Ambassador in reply to PecanSandie

Same here about red meat. I eat it rarely and when I do, watch the amount and try to limit to 2 oz max. If I do get too much protein, I adjust my diet for the day.

PecanSandie profile image
PecanSandie in reply to orangecity41

That is definitely the way to do it...just keep adjusting.

Bet117 profile image
Bet117NKF Ambassador

Hi Old Townhammock,

Welcome!

I agree that seeing a renal dietician would be your best first step as they will take a look at your labs and guide you as to what foods and quantities would best suit your nutritional needs and yet be appetizing. I also agree that there is no set cook book/ it is about adapting recipes. There are guidelines that kidney patients adhere by: low sodium ( 1500-2000mg daily) no red meats, processed foods as canned soups, high sodium salad dressings, cold cuts and cured meats. Eat veggies lower in potassium ( you can find a list on line or ask a dietician) as potatoes,tomatoes, brussel sprouts are high. Grill, steam, roast but don't fry.

Watch phosphorous found in dairy and some breads.

Davita provides a good program in their smart classes but as members have stated; recipes need to be adapted.

I'll send you a link which will give you a head start until you can meet with a dietician.

This is all a lifestyle. My husband eats my food as well. 😊

Pop in and let us know how you are doing.

Bet

nephcure.org/livingwithkidn...

David100 profile image
David100 in reply to Bet117

This is a very good and helpful discussion. I consult with an excellent dietician -thankfully- who hs been a very good resource and made major changes in my diet that took a while to get use to. It is difficult to make such drastic changes. This has been over the past six months. thus far, I am no longer eating red meats and substitute beans and have salmon and chicken two to four times a week. I eat a large salad every day and eat daily a quarter cup of unsalted nuts, ie pecans, macadamia, walnuts and pecans for calories and protein. oatmeal, very low salt bread toasted, fruit and eggs (two to four days a week on the eggs) all for breakfast. I look to avoid salt in everything purchased at the store. I have become comfortable with this and have seen blood chemistries improve and not worsen. Daily exercise is a big thing for me as well.

Best wishes to everyone and thank you and take care.

Bet117 profile image
Bet117NKF Ambassador in reply to David100

Hi David!

I'm so happy to hear that your numbers have improved! There's something to be said about taking care of yourself. It really is a lifestyle as eventually all of the prior foods are not missed!

Sounds like you found a great dietician! She has put together appetizing, nutritious foods. You'll see how much better you will feel.

I, too enjoy salad every day as well as fresh fruits and vegetables. I also eat beans in many recipes that I have created and hummus as well. Check the sodium level.

So glad that the discussion here has been a support to you. Reach out at any time as you are among friends. We share!

Here's to more and more good reports and good, delicious foods!

Best always!

Bet

Ladyprudence profile image
Ladyprudence

Bett117, I've just been following this exchange and decided to look up the link. Found it very helpful. I read the roles of the electrolytes in our bodies and when to cut back on them and WHY. It finally explains in greater detail the importance of curtailing them with kidney disease. It even discusses how we should drink water. I've noticed that if I try to cram that last glass of water in for the day, I feel bloated and very uncomfortable. (Was wondering why my doc said I could ease back on it.) I really appreciate these links.

Bet117 profile image
Bet117NKF Ambassador in reply to Ladyprudence

Thanks, Ladyprudence!

If I can help, I will.

Please keep posting.

Bet 😊

Ladyprudence profile image
Ladyprudence in reply to Bet117

I honestly don't know what to believe from my doctor's office anymore. I'm trying to do all the smart things for myself, but I'm sure not getting anything from them. I finally sent them an email last week asking if they think I should consult with a nephrologist or a nutritionist. One of the doctor's aides answered, not a doc, not a nurse, not sure what her title is. She said she didn't see that I should do anything because my Stage 3a is not abnormal for some my age (79) She said maybe I should be eating more protein, try Boost or something like that. I started eating more egg whites, but I just don't trust this. I thought we were supposed to watch our protein intake. Also, I've been reading we should not drink so much water because it could overwork our kidneys and cause more fluid buildup. I've been drinking up to 75-80 oz a day, and am now cutting back. I feel like I'm going in circles. Has anyone else's doctor said with Stage 3a you don't have anything to worry about?

Bet117 profile image
Bet117NKF Ambassador in reply to Ladyprudence

Hi Ladyprudence,

I'm so sorry that you have had such a frustrating response from your GP's office.

Unfortunately, today all of us have to advocate for ourselves regarding our health.

Regardless of your age, you are entitled to get the best medical care and answers.

Many members of the community will tell you similar stories about not being told that they have CKD or were dismissed.

Age is not a reason to dismiss someone; additionally, stopping the progress of kidney disease is our goal and advocated by the National Kidney Foundation.

As far as seeing a nephrologist and getting their opinion, see if you have another trusted doctor who can recommend someone or look at your local hospital or medical groups and get a name.

Google them on health grades or vitals and see who has a good reputation. and make an appointment for a consult; even if you only see them every 6 months. As long as they accept your insurances, put your mind at ease.

Print out your current labs and labs prior; check off any areas which flag high or low next to the range designated by the lab and bring them with you to the appointment.

List medications and how long you have been on them.

Write down all questions regarding labs and what designated your CKD as 3a and ask for the name of a dietician.

The nephrologist may perform their own tests but bring your labs as a baseline and reason to see them.

If at all possible, bring a family member with you and have them scribe which not of gives you a second set of ears but allows you to focus on the discussion. Don't leave until you have all questions answered and a plan set going forward.

I'm scratching my head as Kidney patients are on a low sodium (1500- 2000mg per day) low protein , monitored potassium and phosphorous diets; if a dietician works with them, the portions and water is based on labs.

So to tell you to drink Boost and eat more protein without credentials is questionable as that would be at the discretion of a doctor or dietician.

As far as the water, the internet can't make up for individual accuracy.

I can imagine how frustrating, and upsetting this must be. Most importantly, take the best care of yourself as you can.

Please reach back and let us know how things went. We're here to support.

Stay strong and go forward...

Warm thoughts,

Bet

Ladyprudence profile image
Ladyprudence in reply to Bet117

Bet117, the lady in the doctor's office is a CMA, Certified Medical Assistant. I've been researching nephrologists, and found what is claimed to be the 3 best in my area. That may or may not be true, but I'm going to call the office of one of them tomorrow and see about getting in. If and when I do, I will take copies of prior and current labs, and my husband will go with me. I will also have a list of questions. At least I'll be moving in the right direction. Thanks for your help. I'm still in here, reading on a pretty regular basis. I don't know how to initiate a conversation , so I just have to put it in a reply to someone else's question. That's not good, I know,; I'll keep trying to figure it out.

Bet117 profile image
Bet117NKF Ambassador in reply to Ladyprudence

Hi Ladyprudence,

No thanks ever needed as speaking to you is my pleasure.

As far as your input in the community, you are doing just fine. Many people initiate conversations by sharing information/ articles that they have found or asking a question. They go to their profile and hit " Post".

It's not required to initiate a conversation but you are welcome to do so.

If you look up at the top of the page, you will see an icon which says " chat" . If you click on it, you will see an opening for a name. Type in the name of the person you want to chat privately with and then your message. It's another feature of Health Unlocked.

I'm so glad that you are getting a Nephrology opinion as I know that you will feel so much better and hopefully get some direction from him/ her. Remember that the goal is to stop progression.

Fantastic that your husband is going to go with you as my husband is my scribe and second set of ears. You are a team!

Please reach out and let me know how things went. I'm in your corner!

Good thoughts and positives!

Bet

NWRobin profile image
NWRobin

I found the most helpful 2 books are "Stopping Kidney Disease" by Lee Hull and "Stopping Kidney Disease Food Guide" by Lee Hull. These 2 books are the best I found and they are reasonably priced. Lee Hull has controlled his kidney disease for 20 years, so he knows what he is talking about. I am so thankful I discovered his books since my doctor and dietician were of no help at all. Good luck!

OldTownhammock profile image
OldTownhammock in reply to NWRobin

I have Hull's stopping kidney disease basics. I was a bit put off by how he keeps hawking his other books and supplements in his books. Did you buy his albutrix? I will buy his food guide and try that.

NWRobin profile image
NWRobin in reply to OldTownhammock

I had a cancerous tumor in my right kidney and they removed the tumor and kidney. So I am trying to keep my remaining kidney healthy by following the diet and recipes in Hull's book. I like his whole body approach. I work with my family doctor, the nephrologist and a certified, licensed naturopath. The naturopath has been more beneficial than a dietician. I now have a shadow on my liver and am scheduled for a liver biopsy. I am going to request a whole body MRI instead of piece meal tests. Good luck in your health journey!

OldTownhammock profile image
OldTownhammock in reply to NWRobin

The same to you Robin

NWRobin profile image
NWRobin in reply to OldTownhammock

Thank you! Have a good week, month and year. Celebrate each day.

Bet117 profile image
Bet117NKF Ambassador in reply to OldTownhammock

Hi OldTownhammock,

As I said below, Hull is appropriate and successful with some patients but each are different with different health needs. He may not be the best solution for you and lacks in person contact. A food guide is a good place to start; take a look but bear in mind that eating healthy is the key.

B...

OldTownhammock profile image
OldTownhammock in reply to NWRobin

Did you buy his supplement? I am looking for a way forward and leaning toward Hull.

Bet117 profile image
Bet117NKF Ambassador in reply to NWRobin

Hi NW Robin,

I'm sorry that you had such a bad experience with a dietician.

Remember that each patient is different.

Just bear in mind that Hull may be suitable for your health needs but not everyone's.

I'm glad that it has worked for you.

NWRobin profile image
NWRobin

I am a 77 year old female also.

Blackknight1989 profile image
Blackknight1989

Ah the ole Lee Hull bait and switch. Please be careful with the “experts” who profess their successes. Most always have contraindicated facts they base this on. Admittedly I haven’t studied Hull in detail but in nearly 28 years with stage 4 CKD(eGFR 15-25) I have seen my share of the miracle cure workers professing the “easy” way to beat CKD. Finally, also admittedly I haven’t studied Hull’s plan but I’ve seen enough of the others to be skeptical of all self-proclaimed easy way to beat any illness. Just my $.02 cents!

ericapo profile image
ericapo

Oh it's rather difficult question. I can't remember any book.

Blackknight1989 profile image
Blackknight1989

Three good sites for nutritional information:

kidney.org/nutrition

kitchen.kidneyfund.org

nephcure.org/livingwithkidn...

Plus a database of Renal Diet

sites.google.com/view/ckdrd...

Scroll down about halfway, find your region and search. That provides a Renal Dietician directory of all accredited ones in your area.

This information is from trusted Kidney Organization sites, not from Lee Hull who seeks to exploit those of us who are easily exploited due to perceived lack of nutritional information available and who are reeling from an unexpected diagnosis. Also all of this information, and there is a plethora of information available from these 3 sites, is free unlike Hull’s books. Unfortunately his probiotic is unavailable for purchase in the US except from Hull himself ($$$& for Lee) but the same exact probiotic with Amino Acids can be purchased on several websites from India for about 1/4 of Hull’s cost. Further, there are several threads that and members who mention they purchase a probiotic from Amazon that is similar but not an exact match to Hull’s overpriced pills.

Finally, with the links provided you can put your own diet together tailored to you and your preferences along with your stage of CKD. Also, you can find and visit a Renal Dietician in your area either face to face or using telemedicine. However, that should ONLY be done after you have a talk with your trusted medical professional. It is my FIRM belief that if you are going to put ANYTHING in your mouth that is new to you, you should ALWAYS ask you must trusted and knowledgeable physician regardless of them being the specialists or a GP. If you don’t have a doctor you feel that way about go find one, they help tremendously. As always I wish you luck on your CKD journey!

OldTownhammock profile image
OldTownhammock in reply to Blackknight1989

thank you so much. I found the kidney kitchen (kidneyfund.org) on my own this morning. Lots of information and recipes for regular every day food. I'm prediabetic so I am already on a preventative diet. I will check your other contacts. Thank you again

OldTownhammock profile image
OldTownhammock in reply to Blackknight1989

My trusted GP told me I didn't need a nephrologist and he didn't know of any renal dietician. So I'm just going to keep searching and listening while I have modified my diet some.

Blackknight1989 profile image
Blackknight1989 in reply to OldTownhammock

You did see the link to the database of renal dieticians I posted as well correct? Most private insurances I know of and Medicare will pay for these visits. Additionally many will do a zoom appointment or a call since they are uncommon currently. The trusted physician comment was made regards ANYTHING that goes in the mouth. For example, if your potassium is high or borderline high like mine, most all the renal diets recommended lots of fruits. If I ate a lot of fruits too much I run the risk of elevating my potassium more. That could cause a heart arrhythmia even a potentially fatal heart arrhythmia that could either severely disable or even kill me. Sorta not worth the attempt to control the progression of CKD only to die from heart issues. Probably but might. So we must be careful of everything that goes in the mouth and mindful of ALL labs that pertain to the kidneys or values affected by our CKD. If not you can cause another health problem while attempting to fix the CKD.

OldTownhammock profile image
OldTownhammock in reply to Blackknight1989

Yes, I did see the link. I had a busy day today and haven't had time to check it out. Thanks.

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