The Diet Doth Confuseth Me! (Renal Diet Thread)

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Blooie

Team Spina Bifida
9 Years
Feb 25, 2014
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So here's the backstory. On January 31 I finally got name to put to the way I've been feeling. The enemy has a name, and it's name is Stage 4 Chronic Kidney Disease. Okay, an enemy with an identity is one I can fight. I haven't yet had a meeting with a dietitian. My next nephrology appointment is March 5th and he'll be setting me up with one then. I hope. In the meantime, I am supposed to watch my diet and stop taking some of the prescriptions I've been on. I want that GFR going up and the Creatinine going down! The problem is I don't know what to do to make it happen! And I'm hungry!!!

So I decided to start this thread. Out of the million members out there, I know there must be some who are in various stages of kidney disease or even, like my beloved sister Linda was, in full blown kidney failure. There has to be someone who is taking care of a person with CKD. Let's help each other. I mean, who out there knows how to make noodles with Bulgar wheat flour....or even more important, who can explain what the heck Bulgar wheat flour even IS? See what I mean?

I've been struggling along with information I've found on-line. When we'd go back to South Dakota on vacation, we stayed with my sister and I would take her to her dialysis. And when she was up to it I would take her grocery shopping. So I had some idea of what I could and couldn't eat, but the diet for full kidney failure and the diet for kidney disease have some differences. And to further complicate things, I'm a cardiac patient. That diet and the renal diet often conflict, except in matters of salt and the other obvious taboos. On dialysis diets folks have to be extremely careful of fluid intake...with the first stages of kidney disease fluids are strongly pushed, or so I've been led to believe.

So, let's go over things before we start. Here is what this page is:

A place to say, "Hey, I found a new recipe today and it was really good!"

A place to say, "I know, it stinks, but potatoes are off limits unless you leach them first. Here's how...."

A place to ask, "I'm going shopping today. What should I be looking for for snacks?"

That's it. Help. Encouragement. Information. Recipes. Hints. And just maybe some new friends.

Here is what this page is NOT:

This thread is not..... repeat, absolutely NOT..... a substitute for for the advice of your doctors or dietitian. Not now, not ever. And that reminder will pop up a lot. Expect it and respect it.

This thread is not a place intended to diagnose, treat, or "cure" anything. It's Kidney Disease. We have it. We can't cure it. We deal. The end.


This thread will remain civil, lighthearted when that's appropriate, serious when it's called for, and we will treat each other with courtesy and respect. There are
consequences for rudeness, sniping, and posts that hurt others. Period. No exceptions. I started this thread, and I can shut it down just as fast. (well, maybe faster - I type slowly)

I don't take points off for grammar, spelling, punctuation. If something is important enough or funny enough or supportive enough for you to want to say it, then what you are saying is important enough for me to want to read it. If I don't understand something, I'll ask. Please do the same if you don't understand me!

Brief periods off-topic are certainly allowed. Sometimes we need to lighten up and step back for a few minutes. But we have to remember that we will have people counting on us for help and support, so let's not linger off topic for long! I tend to be the worst offender. <sigh> Rein me in. Nicely.

All other rules established by BackYard Chickens apply. Please don't give out addresses, phone numbers, email addresses or other personal information in your posts. If you need to exchange such information with another poster, do so by private message - or "conversations" as they are now called.

That's it. I welcome warmly anyone who would like to be part of this thread. And you don't have to have kidney disease to join in. Support is always welcome and you are valued, whether you're a kidney patient or not. This is a heck of a lifestyle change for most of us who have been diagnosed, and friendly faces help tremendously. We might all learn something. Someday those of you who aren't personally invested in this now might be later, and what we all learn here as we go along might come in mighty handy! This is all new to me, so I will make mistakes in terminology, I will make mistakes in foodology. I will make mistakes in wordology. I will try not to make mistakes in personalityology. (I'm having a blast watching my little spell-checker dude have apoplexy over my made-up words!) So let's get started!

I'm Blooie. I've been a member here for a while now, although I was gone for the last 6 months as I started getting sick. I'm kind of a floater - I flit from thread to thread. I have made a ton of good friends on this site, and I anticipate adding to that number. I am having a lot of trouble with this renal diet. I'm beginning to hate blueberries, because every time I'm hungry, I end up with blueberries. <sigh>

For example, last night we had roast beef and veggies. I always make my gravy as my roast cooks, with everything together in the dutch oven....it's the way hubby Ken loves it. So the roast was ready. His plate had a couple of slices of beef, a mound of potatoes smothered in rich, brown gravy, and carrots with butter and salt and pepper. Mine? Well, I had to rinse off the beef and the carrots because there was so much gravy (my delicious gravy, too!) from being cooked together and the potatoes were cooked in with the meat and carrots. I didn't have any potatoes on my plate. I had a small slice of rinsed off beef, a few rinsed off carrots, and.....and....well, my plate looked pretty empty so I opened the fridge to see what else was in there that I could add. Blueberries. More doggone blueberries. So there I was at the sink, rinsing my entire meal before I ate it! I felt like a darned raccoon!

Blueberries - I am beginning to hate blueberries. I don't know if I had to rinse all that stuff off or not, but I did because I remember my sister doing it. She said that that's one of the few meals where she didn't leach the potatoes first, so the potassium and phosphorus from the potatoes would be in the other stuff. I dunno if that's right or not, but she was the expert as far as I was concerned so I never questioned it. I never had reason to until now. And the blueberries? Well, I don't know how to shop anymore, so the fridge and pantry are getting kinda bare. I want desperately to call Linda and ask her a million questions. I can't. Unfortunately we lost my little sister to her kidney failure in 2017.

I have chickens again after 2 years without them. And of course, just when those little pullets start giving me eggs, as of a week ago last Monday, I find that egg yolks are off limits. There is NO justice in a world where I can't dunk a corner of buttered toast into a runny egg yolk from my own chickens. Oh, well....I think that's one I'll just have to cheat on from time to time!

Well, there you have it. I'm floundering. I need you. And if the doctor and dietitian ever get their heads together and give me a diet I can understand and follow, I'll still love to get some help with real, people-really-eat-this recipes, and different ways to make salt-less meals without my beloved potatoes palatable, AND without using blueberries! And maybe I'll be able to help you! Maybe someone will come in and share just the solution you need. This isn't about ME...this is about US. Let's make it happen!
 
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I don't really know anything about kidney disease or what diet should be followed. I do know about cooking food though.

It's there a specific named diet? I know you mentioned a couple in your post @Blooie but I'm not sure what was yours and what was your sister's.

Myself I've had a bad digestive issues that have required a special diet. I've also had to do weight gaining diets after surgeries. My least favorite thing about diets is they get repetitive and boring. I'd be happy to experiment with some recipes with and/or for you.

I'm glad you're taking this head on. I've had some severe health risks myself. I can't directly relate to your condition, but I understand how difficult it can be. :hugs
 
Oh @Blooie :hugs I admire your honesty and vulnerability with this thread! I will definitely stick around to offer any help and advice I can!!

Thanks, although I see it all less as "vulnerability" and more as "desperation"! :D I am getting mighty hungry over here!! And I'm scared...well, a little scared. Nothing much scares me very badly except spiders. In a fair world, people would have 8 legs and spiders would only have two! See, I drift off topic - a lot!

@Trimurtisan may have some recipes up his sleeves, he's a chef!

As long as he doesn't have a carton of blueberries up that sleeve, we'd love to have him and his ideas!

So tell me,@DiYMama540, do you have kidney disease or take care of someone who does? It doesn't matter...if you have nothing but a smile you're still a welcome addition! But Blooie, ever curious, ever snoopy.......
 
While not experiencing kidney issues (yet) I can certainly identify with the empty plate and hungry aspects. I have diabetes (diagnosed last spring) and struggle every day to find foods that are ok. Potatoes....oh how I miss my potatoes. :hugs
Kidney issues are a possible consequence of uncontrolled diabetes. It is not a place anyone wants to end up for any reason.

Blooie, I understand food struggles. No one can say "Hey this is the diet for diabetics". My doctors cannot, the dietician cannot, the magazines for diabetics cannot. My theory is that being individuals things hit each of us differently.

I can have eggs....but no toast. :hmm No yolk dunking here either.

I find I skip entire sections of grocery stores now.

So.... Now my questions.....
Are there certain things other than salt you are to avoid?
Are there things that are helpful to eat? (I know food burnout can happen just eating the "right" stuff)

Having cardiac AND kidney troubles has to be very limiting. :hugs
I am hopeful we (the BYC family) can brainstorm and help find tasty recipes that are ok for you and others that may be having similar restrictions in their diets.
 
Hi, Blooie, I'm Stephanie. No kidney disease here, but my doctor tells me I'm diabetic and I've been diagnosed with gastroparesis. That means my food digests very slowly or sometimes, it seems, not at all. There's lots of food I can't eat and basically, food hurts. I'm hungry a lot but can't eat. I don't know what I can eat either. So I'll follow this thread and support you any way I can. It's no fun when our bodies don't work the way they're supposed to, is it? But you have a lot of friends here and hopefully folks will jump in with answers for you so you can reach for something besides blueberries! :hugs
 
Not snoopy at all!! I'm not dealing with kidney disease but have had some relatives deal with varying levels of the disease, although I was too young to really pay enough attention to the dietary restrictions...they used to use the holidays as the once or twice a year cheat!!

Just here with a friendly smile, soft shoulder, and occasional inappropriate humor 😂🥰
 
I don't really know anything about kidney disease or what diet should be followed. I do know about cooking food though.

It's there a specific named diet? I know you mentioned a couple in your post @Blooie but I'm not sure what was yours and what was your sister's.

Myself I've had a bad digestive issues that have required a special diet. I've also had to do weight gaining diets after surgeries. My least favorite thing about diets is they get repetitive and boring. I'd be happy to experiment with some recipes with and/or for you.

I'm glad you're taking this head on. I've had some severe health risks myself. I can't directly relate to your condition, but I understand how difficult it can be. :hugs

Oh, it's so good to meet you! "Is there a specific named diet?" Gee, I dunno. See how amazingly helpful I'm going to be? It's usually called the "renal diet" but there are stages to kidney disease, based on the GFR, or Glomerular Filtration Rate. That's the rate at which the kidneys are able to filter out wastes from the blood. The lower the number, the more serious the disease. It does tend to drop with age anyway, but at my age - I'm 69 - the "normal" is greater than 60. I was at 90 in 2017. I've dropped to 27 as of January 31, and that's a drop from 34 in October to 29 in December. So my GFR keeps going down. That's not good.

From what the nephrologist (kidney specialist) told me, what I remember from my sister's diet, and what I've been studying on-line (which is probably never a good idea!) the things a kidney patient needs to minimize, or even avoid, in a kidney-protecting diet are: Proteins, Sodium, Potassium, and Phosphorous. We are supposed to limit dairy. There are fresh fruits and vegetables that most folks are supposed to eat in abundance that we have to avoid like the plague. Tomatoes, oranges, avocados, potatoes (regular and sweet) bananas.....are you starting to see what we're up against? I can do without canned veggies...I prefer fresh or frozen anyway. But the vegetable list is almost as bad...no spinach, cucumbers, winter squash, etc. We also have to limit dairy.

I can eat blueberries. <sigh> Yayyy, me!! My diet is a diet intended to preserve what function I have left. My sister's situation was different. She suffered a ruptured abdominal aortic aneurysm. She was rushed into surgery and the repair was successful but she threw an embolism shower into her kidneys, which basically killed them. On December 26th she had full kidney function. On December 27th she had none. So she was on a full dialysis diet, much more rigid than what I have to follow. She had to take what was called a binder before any food went into her mouth....snack or meal. If she was going to eat it, that pill had to go down first, to trap any phosphorous that might be in whatever she was eating. Phosphorus content does not have to be on the labels of food. Very few foods even say, "added phosphorous". So we have to guess. Linda's diet forced her to measure any liquids she took in. Because she had no kidney function, what went in could not get out until it was her dialysis day and accumulated fluids were removed from her body. They weighed her before dialysis started (her "wet" weight") and they weighed her again afterwards. (her "dry" weight). Those weights are how they determined how the dialysis would proceed. She used to love those little Del Monte or Dole fruit snack cups, with peaches or pears in them. The juice in those even counted against her fluid intake. With kidney disease, we don't have to do that. We still have function, it's just limited. We want fluids, but we have to watch what kinds of fluids we take in. No dark colas, that's for sure. Boy, I got my hiney chewed for my Pepsi intake!!

Well, I guess I've about confused the heck out of you and anyone else who might be reading. Goodness knows I've been confused for the last two months! Sooo, Sir Chef...what can you whip up for me that doesn't have dairy, limited protein, a few select fruits and veggies, no salt, and NO BLUEBERRIES?? :idunno
 

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