Confused about diet : Hi, Im so confused... - Early CKD Support

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Confused about diet

Fluuux
Fluuux

Hi,

Im so confused about the kidney diet and when I've eliminated everything we aren't supposed to eat there is nothing left?

For the past years I've been eating a diet consisting of 70-80% bread and pasta beacaue I thought that was a kidney safe way to get full. But now I've read that too much pasta and bread is also a bad thing?

I honestly don't know what to eat anymore, all I have is some particular vegatables and fruit like kale, bell peppers, cabbage, berries, apples etc. Are we all supposed to be fruitarians?

34 Replies
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Hi i have stage 3 ckd and i dont no what to eat my doctor has said balanced diet and keep hydrated and lower salt i eat oats every day lots of fruit and veg brown rice chicken and fish and sweet potato and drink only water and 2 coffee a day i worry that my food is bad even thoug its all healthy i tend to eat those things as i weight train a gym 4 times a week im really worried i should be on a kidney diet, does your egfr go up and down ever as one min mine is 50 then like 45 doctors say its in my range should i worry

Hi Fluuux and thank you for your post. A healthy diet and exercise are important parts of living with kidney disease and dietary needs for people who have kidney disease can vary. It may be a good idea for you to see a renal dietician. He/she will be able to discuss your dietary needs with you and suggest suitable ways of food preparation, cooking, etc. You would be able to see a renal dietician as an outpatient [they are often in renal outpatient clinics]. Your GP/renal consultant will be able to make a referral for you. Also, the following website has some useful information on diet---

The National Kidney Foundation

https;//kidney.org/nutrition

There are also some recipes for you to try. Are any other members able to help Fluuux, please?

Thank you and best wishes.

Hi there, you don’t say what stage you are at or the cause of your CKD. Without knowing that, it’s difficult to give specific advice. If you have mild CKD, the general advice is not to go crazy and cut out whole food groups as you may miss out on vital nutrients. I eat lots of whole fresh foods, lots of veg. I try and avoid processed foods because of the salt and phosphorous and avoid fizzy drinks, salt and too much sugar. Moderate consumption of red meat and dairy (although I avoid dairy completely because I’m intolerant to it). Don’t drink too much alcohol and if you smoke stop. Take moderate exercise and drink plenty of water. I personally think you need a more balanced diet. However I say this as a CKD patient not a doctor or dietician and I don’t know your circumstances. Some people with more severe CKD do need to eliminate certain things due to their blood results.

Sally10255
Sally10255
in reply to Julesboz

Great advice!!

Fluuux
Fluuux
in reply to Julesboz

How much carbs do you eat? And how do you season your food, do you use sauces?

Julesboz
Julesboz
in reply to Fluuux

I just try for a balanced diet. I don’t measure or monitor things strictly so I can’t say for certain how many carbs I have. I have gluten intolerance so don’t really eat bread or pasta much (the GF stuff isn’t great). I eat potatoes both normal and sweet and porridge oats and I love a bit of dark chocolate. I just try not to go over the top.

Re sauces, I don’t buy pre made sauces (apart from curry paste) as they tend to be high in salt and other additives. I always make my meals from scratch, then you know exactly what you’re eating.

Fluuux
Fluuux
in reply to Julesboz

How do you make sauces without dairy? (sorry I'm not that knowledgeable in cooking). Cause we can't eat tomato either right? So what base can we have for sauce?

Julesboz
Julesboz
in reply to Fluuux

I don’t do dairy based sauces, I tend to do tomato based sauces. I eat a lot of tomatoes. This is what I mean about not getting too hung up on specific foods. I eat lots of veg and salad, because it’s healthy. Again, apart from what I mentioned earlier, I was advised it’s unnecessary to remove particular foods from my diet at stage 3 unless my blood test results indicated I needed to. Yes I could be really really strict and maybe move myself from stage 3 to stage 2, but I prefer to eat a healthy balanced diet and enjoy my food and life, stage 3 is still classed as very mild! Just following the guidelines I indicated above, I’ve increased my GFR from 53 to 59 and I’m not being very strict. Again I’m not a doctor and don’t know your specific blood results, but if you’re stage 3 with no obvious cause, I would imagine that this may work for you too. I would strongly advise trying to see a dietician to reassure you.

Fluuux
Fluuux
in reply to Julesboz

If we eat alot of things with potassium at an early stage of ckd, does it make the ckd progress faster? Or is it only when we are at a later stage already that it makes a difference when it build up in the body? Hope I'm making sense..

Julesboz
Julesboz
in reply to Fluuux

I’m afraid I can’t answer that. There might be someone else on the site who has better knowledge than me about that. I’ve found this page:

nhs.uk/conditions/kidney-di...

This is what the advice I was given is based on. In the section on diet it says that you should have a healthy balanced diet and then there’s a paragraph saying you may be given certain specific advice about limiting some things like potassium and phosphate. I know my blood levels of these were fine and I wasn’t told to limit them, which is why you really need to either see your blood results or speak to a dietician to allay your fears and stop you removing foods from your diet unnecessarily.

I should also reiterate that I’ve been at stage 3 for at least 10 years and I’ve stabilised with diet changes, not got worse. The vast majority of CKD patients do not progress to end stage renal failure and most may progress so slowly or stay stable that it’s not necessarily a huge health issue. I found an NHS info page some time ago showing that only approx 5% of CKD patients progress to end stage, but can’t find it now.

However in saying that, I’m not advocating doing nothing, I just think moderate sensible change and healthy eating is the way to go, unless advised otherwise by your doctors.

Julesboz
Julesboz
in reply to Fluuux

After my first response about potassium I went away and looked at my blood test results. When I was diagnosed, my potassium levels were right at the bottom of acceptable so if I’d cut out potassium rich foods like tomatoes, I may have become hypokalcemic. Since then I’ve continued to eat healthily and kept potassium in my diet, in fact I’ve probably increased it with fruit and veg intake since reducing dairy, and every time I’ve had bloods since then my potassium levels are smack bang in the middle of acceptable, despite my CKD. This is why it’s so important not to cut out loads of foods and potentially miss out on these minerals/nutrients. Talk to a professional :-)

Hi and thanks for the answers. I am at an early stage and I don't know the cause. But I would like to eat according to a diet that's maybe for more advanced stages as I think that this would help me slow down the progression as much as possible. Would be logical or what do you think?

itzmich
itzmich
in reply to Fluuux

If you can talk to I dietian. You shouldn't be eating all those carbs. Eat lots of veggies instead small amounts of protein which you can find out how much from a dietian. I am stage 3 and according to my height and weight I can have about 2/3 ounces per meal. I eat the same portion of carbs and the rest vegetables. I do not add salt to my food. No dairy except every now small amount of low phosphorus types. Plenty of water. No caffine....alcohol in moderation every now and then. So far my gfr number has improved and I am not afraid of food and have done pretty good with this way of eating. Yes I am hungry sometimes and I do indulge sometimes just not everyday. Good luck i know you will get a handle on this once you talk to a dietian and find out what's good for you.

Fluuux
Fluuux
in reply to itzmich

Hi and thanks for your reply. You say you don't eat that much carbs, very little protein and alot of vegetables. So your plate is about 50% vegetables, small hit of protein and then some carb without sauce since you don't eat dairy, or some dairy free sauce? Or how do you make it taste like more than just flour?

itzmich
itzmich
in reply to Fluuux

That's about it. I have every salt free herb mix. Fresh herbs, different vinegars and oils, nutritional yeast. Flour? Gravy? Mushrooms onions and mushroom stock or any salt free stock. You get used to no salt. Meat once per day then vegetable protein. Hope that helps

Myskyangel
Myskyangel
in reply to itzmich

Sounds like you are doing great... I was diagnosed in 2012 at stage 4. Been steadily getting worse, gfr is now 11 getting ready to be put on transplant list, dialysis probably soon. They are not sure as of the cause and no one investigated it much at beginning. Transplant team suspects combination of kidney stones and celiac caused it but no way to prove it. I was told to stay away from animal protein as it was hard for the kidneys to process so I have been eating vegan and trying to switch over to whole food plant based diet. Eating this way has slowed down the progression for me but has not stopped it. If it had been caught sooner then maybe it would have stopped it. the rest of my blood work shows that I am very healthy for my age (63) . If you're diagnosed with for at any stage it is advisable to change your diet and get rid of all meats and dairy. Nephrologist know next to nothing about nutrition, mine actually told me that that they have minimal training on that.

itzmich
itzmich
in reply to Myskyangel

Good luck with your journey will be sending positive thoughts your way. Its alot to adjust to, I'm sure you are overwhelmed. All you can do is the best you can.🙏💕

To Fluuux and 14McCabeE,

In Nov. of 2017, I was diagnosed with CKD stage 3. I began my confusion with the same confusion that both of you are exhibiting. I read as much as I could and searched for several months. Finally, I settle with two books by Mathea Ford:

--Living with Chronic Kidney Disease-Pre-Dialysis; and

--Create Your Own Kidney Diet Plan.

Yes, it is confusing, yes, we get frustrated, but we can find the way. Fluuux said he has lived "eating a diet consisting of 70-80% bread and pasta". My husband has diabetes and I rarely prepare pasta and have very little bread. However, I do feel that I eat a varied diet. My egfr improved close to 20 points during the first three months after my diagnosis, so I must be doing something right.

I will say that I have doubts whether or not you will actually get to see a renal dietitian. I asked several times and they set up an appointment, with a diabetes dietitian. Even after a few months, I was more knowledgeable than she was about eating with ckd. Also, they do not like to refer you until you are at stages 4 & 5. My personal conviction is that if I do now what they will tell me to do then, I run a pretty good chance of never getting there. So, I try for low sodium, controlled potassium and phosphorous, low protein. I try to keep hydrated and exercise. This has all helped me.

Good luck to both of you,

lowraind

Fluuux
Fluuux
in reply to lowraind

Hi! Thank you so much for the reply and I will look up those tips asap. I was just having a small breakdown in the kitchen, I am so hungry but honestly don't know anything that's not vegetables that's safe to eat. IF you could give me some examples of what you eat I would appreciate it so so much. But I know it takes time and energy so no problem otherwise

Julesboz
Julesboz
in reply to Fluuux

I know I’ve replied earlier, but I just wanted to say please don’t be afraid of food! I remember feeling the same when I was diagnosed. I can't stress enough that you just need to eat a healthy balanced diet at early stages, albeit with avoiding/reducing a few things (the ones I mentioned earlier). Most of the advice you see online is written for later stages. I’m stage 3 (have been for over 10 years) with no known cause. I saw an NHS dietician as I have multiple food intolerances and this is the advice she gave me.

lowraind
lowraind
in reply to Fluuux

This is something I posted 9 months ago: healthunlocked.com/early-ck...

LJMusgrove posted this: healthunlocked.com/nkf-ckd/...

Other sites:

--kidneyfund.org/kidney-disea...

--niddk.nih.gov/health-inform...

--webmd.com/a-to-z-guides/die...

--healthline.com/nutrition/be...

--davita.com/education/kidney....

Hope all of this helps. It is an ongoing search and an ongoing quest.

Try and get last weeks daily mail. There was a diabetes diet sheet each week. Supposed to be good for cold as well

Thanks lowraind, I too have read the 2 books by Mathea Ford. ( am at CKD stage 3 also). I paired the recipes from Matea Ford books, with diet from my Doctor It has slowed down the progression of CKD. The information from Living With Kidney Disease is very helpful and I re-read it.

I do not like the constant request to sell me something, but I do think the advice is good.

agree

Hi, Fluuux,

Like you, My wife and I started from scratch on 2/1/19. We have gone mostly vegan/rest vegetarian. On 3/20/19 my wife had her labs done. Her GFR went from previous 66 to 78. She is now closer to Stage 1 than Stage 3. I am getting my labs done tomorrow, 4/22/19.

If you want to truly educate yourself instead of relying on diet books or tips, buy Stopping Kidney Disease by Lee Hull; it came out January of 2019 and it's on Amazon. It has the most up to date, comprehensive information on Chronic Kidney Disease backed up by the latest medical studies which are included in the book (you can skim or skip these). I bought the book and it was the basis for our healthy CKD diet.

The book is a bit long, but it's written in layman's terms and is very informative. It covers every aspect of CKD and diet and how diet affects CKD. Good luck.

Fluuux
Fluuux
in reply to Beckett24

Wow this sounds amazing, thank you so much!

Beckett24
Beckett24
in reply to Fluuux

Hi, Fluuux,

You are welcome.

I forgot to include that the Eating Plan does not start until Chapter 34. But do not be alarmed! After reading the first 33 chapters, you will know more about CKD than most Primary Care Physicians (PCP) since they are not phrenologists, and after reading the rest of the book on diet, you will know more about CKD diet than most PCPs and nephrologists since they are NOT dieticians! LOL

BGW, good luck on finding a registered renal dietician. They are very rare.

Hidden
Hidden

Hi Fluxx and Beckett24 ,,i have also purchased Lee Hull book, it was very helpful for me as I was so confused on what to eat.. He will also be bringing out a new book soon on an eating plan, which I'm looking forward to. It's been the most informative one so far for me. Good luck

Beckett24
Beckett24
in reply to Hidden

Hi, Dash. I can hardly wait for the Lee Hull CKD diet cookbook. Tomorrow, 4/22/19, I get my labs done. I started eating healthy on 2/1/19. Wish me luck!

Hidden
Hidden
in reply to Beckett24

Hi Beckett,, I wish u luck,, I know when I went on a plant base diet my gfr improved, and that was before I read Lee's book. So I can see how his book makes sense.. All the best.

Beckett24
Beckett24
in reply to Hidden

Thanks, Dash. I'll put up my lab results once I get them. I'm not expecting a massive improvement, but since my GFR went down for my last three labs in a row, any improvement would be welcome.

You should speak to your gp or your practice nurse about diet, because every patient is different in what they can or can’t eat. Plenty of fruit and veg, low fat, salt and sugar, cut out the rubbish, is the way I tend to go. I’ve found since being diagnosed that I have fewer hot drinks and sometimes feel the liquid in my stomach.

Gillian

I know it is very frustrating. I have been eating regularly for the most part because I’m always on the go.. I had pizza, chips, sushi, fast food etc.. the only thing I have absolutely cut out is red meat.. I can digest that at all. I don’t eat tomatoes but sometimes I cook spaghetti with the low sodium prego sauce which I use very little. I still drink coffee but keep it decaf. I know this isn’t the best diet but right now it’s working and I eat chocolate almost every day 😬.. I know I definitely need to cut that down. I’m in stage 3 gfr 40. I am trying to test different foods to see what I can eat. I had lobster for my birthday last week but it made me feel really sick so I’m definitely not gonna try that again. I have dairy every day but usually a cup of milk with cereal or eggs. I have cheese 3 times a week. Hope this helped a little bit.

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