dietary advice needed.: Hello - I am still... - Kidney Disease

Kidney Disease

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dietary advice needed.

fartikins profile image
36 Replies

Hello - I am still having my 6 prunes 2 apricots and some ground flaxseed for breakfast to help prevent constipation - it seems to work. For my lunch I am having a small bowl of porridge made with milk and water and fresh blueberries. For my evening meal I have 2 slices of Biona rye bread with sprouted seeds - toasted with a little cheese. I usually have some cucumber chunks and sliced bell peppers with plenty of pepper. That is usually followed by on average about 20 grapes.Its really boring - problem is I do not know if I am doing the eating side of it correctly and getting all of my nutrients. Believe it or not I am still trying to find a renal dietician ( UK) without any success. I would love some honest feedback as to whether I am barking up the wrong tree here. I am stage 4 with a gfr 0f 17 hoping to make it go higher- thanks for reading.

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fartikins profile image
fartikins
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36 Replies
Bassetmommer profile image
BassetmommerNKF Ambassador

Wow, Fartikins, that is really restrictive. Since I do not know your medical history, keep looking for a dietician to work with. I would be worried about the lack of calories you are eating and the high potassium foods. Prunes and apricots, sprouted seeds and even grapes to some degree are loaded with potassium. I am assuming you are getting your protein from the porridge, milk and cheese. Dairy protein can be hard on the kidneys. Just saying. I switched to fortified almond milk for my porridge. Works well and it is tasty. I wonder how long you can stick with that and what the affect would be? I too eat pretty much the same foods all the time, but I do have more variety than you have. I am not a dietician, but I would be worried about muscle wasting and not getting enough protein, minerals and calories. Are you dropping weight?

fartikins profile image
fartikins in reply to Bassetmommer

Hello - thank you so much for your reply. I have never been a big eater and I am also vegetarian. I work on the fact that I am allowed so much potassium in my diet so what I have with my prunes and apricots plus the half cup of skimmed milk I have for drinks and my porridge would keep me under the limit allowed. Before I was diagnosed with stage 4 I would happily scoff a bag of mixed nuts and fruit - 500mg - per every 2 days which I think made a big contribution to stage 4 - when someone on the forum said that 1 raisin equals 1 spoon of sugar and I was diabetic as well - I thought I was being healthy. Now I am insulin dependant - I have beaten myself up pretty badly over my lack of control but I never ate cakes, sweets or chocolate - or drank anything but weak tea and water. I have found a renal dietician in London so if I cannot find someone locally I shall have to travel and she is very expensive. I need to up my protein intake but I really need some guidelines. I have been given instructions by my diabetic nurse to keep my blood sugars between 6 and 7 which is proving to be very difficult. Thank you so much again for your valued input.

fartikins profile image
fartikins in reply to fartikins

sorry I should have mentioned I am not losing weight but seem to be gaining a bit.

Bassetmommer profile image
BassetmommerNKF Ambassador in reply to fartikins

'HI again,

With the news that you are diabetic, please go see the dietician. It will be less costly than going on dialysis.

The fruits you are eating are all sugar bombs, except the blueberries. They are a good fruit. The prunes are really bombs and so are the apricots if they are dried and grapes are crazy high in sugar for their size. I get it about the constipation, but maybe something else might be better for you. When you eat a carb, eat protein. That is what I was taught. So, if you eat for example a cracker, have a piece of cheese with it. Small piece. I really think that your diet will not be good for long term. And if you are gaining weight on it, then your body is storing fat because it is not enough calories. I know that does not make sense but starving your body will through it into a hoarding mode. I have done that to myself, and it is really hard to move past it. I think for long term, speaking to the dietician will help make your life much more rewarding and you can enjoy your food.

There are some really wonderful new drugs out there that are kidney protective and are for diabetics. My husband whose sugar was not well controlled through diet, is on Farxiga. I am on a GLP-1 called Ozempic. His glucose went from 8.2 and up to now 6.5. Mine went from 7 to 5.8. I was able to cut back on long lasting insulin. Both of our kidney functions have increased. Talk to you nephrologist about them. They can be expensive, but they also have a patient assistance program so then they are free or very cheap.

You have a lot of alternatives so invest in yourself and spend the money seeing the dietician. You are worth it.

RonZone profile image
RonZone in reply to Bassetmommer

You know, I sorta wish we had a place where people could post exactly what they eat every day for a particular meal. Make it a "cumulative" recipe file where folks could scan down it and find a particular meal plan for one meal that they might want to try. The title could say what kind of meal it is, "For control of sodium and potassium" or "For control of sodium, potassium for those with diabetes" or "For control of sodium, potassium, and constipation". or even "For control of sodium, potassium, diabetes and constipation". The issue I have with this site is that it would take a very long time to look through all the posts to find the little bits of dietary information on this site. I've looked at some of those recipes on the kidney dialysis clinic sites and a bunch of em are pretty high in potassium, to be honest. They must be for stage 1, 2 and 3 folks, not for us stage 4 and 5 folks. OR they are mostly for those on dialysis, which obviously the clinic would support rather than trying to offer information to keep folks OFF dialysis.

So who on here will create a one stop shopping "post" where folks can put what they eat for a given meal, and what it's used to control.

I asked my neph for a referral to a dietitian, and he basically said "Oh, you'll get one of those once your on dialysis". And that was the end of that discussion. And there's not one in my general area. There are regular dietician, but not renal dieticians.

fartikins profile image
fartikins in reply to RonZone

That is a really good idea.

pheebee profile image
pheebee in reply to RonZone

brilliant idea.

Sophiebun11 profile image
Sophiebun11 in reply to RonZone

Have you tried asking your PCP for a dietician referral. My PCP sent me to the dietician while I waited on my first Neph appt.

That's a good idea about diet post "file". I often feel I'm the only one with low protein and below normal potassium levels who has to supplement and add more potassium foods to my diet.

I have CKD from autoimmune disease so I'm the oddball with low BP and no type 2 diabetes, low potassium blood level, and no protein in my urine.

RonZone profile image
RonZone in reply to Sophiebun11

That's a good idea to ask my primary doc about a referral. I'll do that and see what they come up with specifically for "renal" dietitian.

Yep, you are definitely the oddball in this bunch. What I would give to eat a banana again! Maybe some of the ambassadors on here will see this idea and figure out the best way to do it. And if they do, you'll have your own little corner in there mostly to yourself it seems. But there will be others at some point in the same boat you are in. There always is, if they come across this site and find you. You should edit your profile description to include that you have low potassium and low BP and no diabetes and no protein. So folks know you are in "that" group. Hey, you can come up with a name for your group. Since you were in the medical industry for so long, I bet you can come up with one for the LP, LBP, ND, NP group! And post recipes that you have found helpful for your group, with a warning that includes high potassium, but no animals ;-)

jodaer profile image
jodaer

Hi, I agree with Bassetmommer about the fruit. Not the best choices. I do understand the prunes though. I have the same problem but double downed by IBS, It looks to me like you aren't getting enough protein but not sure what your limit is. Do you have limits on protein, potassium and sodium? The best way to help your CKD is to make sure your diabetes is under control. Look for the low glycemic foods. I was told to eat fiber with carbs. Hadn't heard about eating protein with it. There are some good new meds but they can have some bad side effects too. I hope you can get with a dietician soon.

RonZone profile image
RonZone in reply to jodaer

Oh boy, without fruit I'd be up the creek with no menu.

Cc143 profile image
Cc143

Cap of Extra Vigin Olive Oil helps constipation.

Lacycat1234 profile image
Lacycat1234 in reply to Cc143

I would check with your Doctor first about taking a cup of Olive oil. Are you aware if you if you are talking any sort of meditation at all, it may it may interact with that medicine.

pheebee profile image
pheebee in reply to Lacycat1234

Cap not cup.

Sophiebun11 profile image
Sophiebun11 in reply to pheebee

I give olive oil to my kitty to help with hairballs on occasion. About a tablespoon which is around a capful.

WinJ3 profile image
WinJ3

I would highly recommend you find a renal dietician that will work with you. We all are so very different and require different. When you find a dietitian give him or her all your lab results and what you are eating now.

One thing that helps me keep track of my nutrition and calories is the app Chronometers. I was surprised when my nutritionist highly recommended it as it made it easier to see my carbs, fat, protein, potassium, etc.

Sophiebun11 profile image
Sophiebun11 in reply to WinJ3

Dumb question, but do you have to have a smart phone (I don't) or can I use the app on my computer?

Thanks.

Ziggydoodah profile image
Ziggydoodah

Have u been referred for dialysis yet? As you usually get a dietician as part of the dialysis team. Not that they are much help. Mine just tells me to eat more ham 😳😳...even though I'm trying to go more plant based. I don't understand why diet isn't a bigger part of treatment. Drs just seem hell bent on pumping us full of drugs. Im based in Glasgow by the way. Wishing u all the best

Hello67 profile image
Hello67 in reply to Ziggydoodah

I’m shocked that they would tell you to eat more ham. Pork and beef are very hard on kidneys and damaged ones have trouble processing those meats and clearing them out. I’m no expert but I did take a kidney class and they taught not to eat any meat except skinless chicken or fish. But the evidence does seem to point to plant based as having the best outcomes. I am on mostly plant based but don’t always eat as healthy as I should. My egfr improved tho from 33 to 48 after cutting out all meat except salmon once in awhile. The good people on here told me about Lee Hull’s book, Stopping Kidney Disease, and that information has helped me. The folks on here are very knowledge and I’m so glad I found this resource. God bless 🙏🏻🙏🏻🙏🏻

Ziggydoodah profile image
Ziggydoodah in reply to Hello67

Thanks for your comment. I know, I cant get my head around their mentality sometimes. I see the dietician every 2 weeks and we also have a bet before we go in, to see how many times she mentions ham!! My husband thinks she has shares in a meat company 😎😎. I just find it all very frustrating as they tell u not to follow plant based diets here. Not enough protein etc. Its very disheartening when you don't get the backing of your medical team. I too have read lots of articles etc and I really wish I had researched all this at the beginning of my "journey". You did amazingly well to get your GFR up that much. Well done. Wishing u all the best x

Hello67 profile image
Hello67 in reply to Ziggydoodah

Thank you so much. I wish you well in your journey and am so sorry that you are at the point in your disease that you are. Your husband might be right about vested interest in ham. Lol🙏🏻🙏🏻🙏🏻

Bassetmommer profile image
BassetmommerNKF Ambassador in reply to Ziggydoodah

Hi Ziggy, great name.I am concerned with the Ham. Are you on dialysis? Ham is salt, fat and processed. All big no no's in the world of CKD. I would report them to the attending Doc. That's crazy. Be smarter than her and ask her what nutrients she feels you are lacking that the ham should provide? Are your salt/ sodium levels off? Then stay away from the ham.

Sophiebun11 profile image
Sophiebun11 in reply to Bassetmommer

Good idea, I would relay the ham advice to the Neph as well. I just can't get over a trained medical person giving that advice.

Sophiebun11 profile image
Sophiebun11 in reply to Ziggydoodah

By any chance is she a part-time pig farmer? LOL

Ham is terribly high in sodium as well, isn't it.

I know that you need to increase protein on dialysis, but there are better ways than ham for sure. That's nuts.

Hello67 profile image
Hello67 in reply to Ziggydoodah

Also, the medical community is all about making money I’ve found out from the posts on this site. The money is in dialysis and drugs but they don’t make money on people who improve through diet.

WinJ3 profile image
WinJ3 in reply to Hello67

Exactly…the big money is made at end stage CKD. In fact very few Nephrologists will be concern until you reach near the end stage. You really need to look out for yourself and be a self advocate. I personally had a huge improvement in efgr when I stopped eating a lot of meat.

Uytk profile image
Uytk

Please check with your nephrologist and renal dietitian on your blood results for potassium , phosphorous , protein etc. I’m also at stage 4 living in England and ‘forced’ my nephrologist to give me accesss to renal dietitian. They have to at stage 4. Plus my BP was high. I’ve found clearing.my Bowles helps in bp levels too. And I do 10miles of very casual ride on exercise bike every day. This clears my bowel plus reduces blood pressure.

Check with your nephrologist and dietitian.

nonna70 profile image
nonna70

Since I agree about checking with doc and dietician, I'm wondering if it's the expense or a problem of transportation? Would it be possible to do a telehealth consult with her?

WinJ3 profile image
WinJ3 in reply to nonna70

Yes, I use Telehealth for my dietitian.

chicablue profile image
chicablue

Someone else on this blog recommended the Lee Hull book, and i got the Food Guide. If you follow his diet, I dont see how anyone could be constipated on that. I tried it for 2 days and got diarrhea. Just a comment, I read that renal care is so much better in Europe than it is in the U.S. I think i agree. My nephrologist sent me to his dietician, and she was terrible! just told me the basic things like how many servings of veg's and fruit I should have every day, like what they teach you in grade school, and when she added, oh, you can drink diet coke, I knew she didnt know what she was talking about. I take a teaspoon of flax oil in the morning before I have my coffee. that helps me. I didnt like the seeds. The only thing I see that you eat that may be constipating is the cheese. Good luck!

fartikins profile image
fartikins in reply to chicablue

Thanks so much for your reply - I will get that book. It may prove invaluable.

Starcatty profile image
Starcatty

Hello.....if you google "Kidney- Friendly Plant-Based Recipes" on Facebook, you will get endless recipes and advice.

RhenDutchess123 profile image
RhenDutchess123

You may need to see a Gastroenterologist...If you are not having bowel movements you may be impacted

Dora86 profile image
Dora86

Can I ask are you at a specialised hospital or at your local hospital. It can make a huge difference in the type of support and care you get including dieticians. Also I find I could be eating all the right things for my bowels but if I'm stressed I become constipated. Stress can have a huge impact on your bowels. Unfortunately we can't avoid stress.

fartikins profile image
fartikins in reply to Dora86

Hello - thanks for that - I will investigate.

Sophiebun11 profile image
Sophiebun11

Unless you are spilling protein, or have high potassium, I would add more fiber to your diet in the form of legumes and also add some good quality protein powder to your food.

I'm a vegetarian and have to keep my potassium and protein levels up. My potassium is below normal and I have to take a prescription.

Make sure you need to limit your intake before doing so. Everyone with CKD doesn't need to limit protein and potassium, only those with high levels.

It sounds like you need to eat more fresh veggies or salads to get more vitamins. Are you taking a multivitamin that your Neph has approved of?

Your diet is very limited, and I don't know why you are doing that unless you have other problems.

More legumes, veggies, and fiber like quinoa will help with your constipation as well as your nutritional needs.

Best of luck to you.

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