Finally getting to see a renal dietitian!

[Athena]

I don't know if anyone else can relate to this but predialysis dietary advice is so confusing & mixed. Except for keeping to a low sodium diet, I've never been told by my nephrologist to follow a low-protein diet. If anything, I was told to eat lots of protein in the interests of protecting my Hb and iron stores. Although my PTH levels are above normal & I now take calcitriol for it, my calcium & phosphate levels are within normal range, as is potassium.

I am however finally going to see a renal dietitian soon! As well as a renal social worker for general support & counselling but I tend to be guided by what my Nephrologists really say. If they offer me little by way of dietary advice, then confusion is the name of the game!

I eat animal protein a few nights each week, lots of green salads, vegetables, tomatoes, berries, greek yogurt, dark chocolate, wholegrain bread, and about 4 eggs per day. I am in Stage 3b (egfr in the 30s). When I was in hospital recently for an electrolyte imbalance issues, I was in the renal ward & I was given meat for lunch & dinner! Lots of carbs as well.

If anyone has any advice that could share, I'd appreciate hearing from them.

I'm also someone who's a tad underweight & am trying to gain weight.

[kristina]

Hello Athena,
The reason why all these dietary advices don't even agree with each other
is, that they have been "on the scene" for such a short time... and sometimes there is money to be made...
... When I started to become a strict vegetarian after my kidneys first failed in 1971, my decision came about,
because a Professor of medicine advised me that he would go vegetarian
if he were in my position when I tried to recover from complete kidney failure in 1971,
... The professor thought, there could be a way to keep the kidneys functioning for a longer time, if a strict vegetarian diet would be kept,
instead of doing nothing and waiting for dialysis straight away ... (don't forget the time was 1971)
... and I thought, what would be good enough for this professor as a medical professional, is most certainly good enough for me
and so I became a vegetarian on the spot in 1971 and it was the right thing for me to do,
because my kidneys continued to function without needing any dialysis from 1971 until December 2014...
... Perhaps the best thing for anyone in this matter, is to go with what their own body needs, rely on their instinct and try to do their best...
... the reason why many doctors/nephrologists think a vegetairan diet may be the "right ticket" in this situation, is,
that a vegetarian diet is very gentle to the body and does not "unnecessarily excite" or aggravate the body
and/or the digestive system and because of that the kidneys may be "pampered gently" to function longer...

Best wishes from Kristina.

P.S. When I say "vegetarian" I mean everything except for example garlic, because garlic is very heavy to digest
and because of that it becomes a "heavy burden" on a fragile body during this process...

[Athena]

Kristina,
 
Thank you so much for your insightful comment. If anyone told me what you were told in the past, I would undoubtedly have done the same by now! Just by way of comparison, I've been told by my Neph that the ACE Inhibitor is what has largely eliminated the need to follow low-protein diets, as was required in the past before ACEs were introduced. I was also told by a dietician my Neph referred me to that I should eat 2 grams of protein per kilo of body weight. That is just what I've been advised ...
 
Can you please tell me what your diet has consisted of in more detail? I would really love to know.

Because you have followed a vegetarian diet for 43 years, did you ever run into problems with low iron stores/low Hb issues at any stage on this journey?

[kristina]

I was never told anythiing by anyone (except by the professor I have mentioned before),
but all doctors agreed ever since, that I should continue doing what I am doing because it seemed to be working fine for me...
... as my blood tests always confirmed and testified ....
... as to running into troubles, I only started having troubles with low iron etc at the last stages before starting dialysis last December 2014...
... and to my knowledge all the years before I had never any issues with it... and my blood tests were always "perfect" through all the years before...
and I was always advised to continue eating what I was eating...
... I shall write more about my diet in the Diet-section as soon as I can find more time,
because at the moment I am just preparing to go for "you know what"...
...  and in the next few days I shall be very busy as well, but as promised, I shall write more details about my diet
in the Diet-Section as soon as I can find more time to do so...
... One thing I should mention here is, that I have eaten a portion of 3-4 Asparagus peeled and cooked for 18 minutes every day for many years...
because Asparagus is a very mild and very natural diuretic... but not more than 3-4 Asparagus per day because of the potassium...
Good luck an best wishes from Kristina.

[KarenInWA]

2 grams of proteing per kilo of bodyweight??? Holy what??? For a pre-dialysis diet? Athena, where do you live? I also was put on an ACE inhibitor due to spilling protein in my pre-D days, (benazapril 10mg, was on it for years) and while yes, it reduced the protein spillage significantly, my neph recommended a LOW protein diet of approx 0.6gm of protein per kilo of bodyweight. Protein is hard on the kidneys to filter, hence the need for a low protein diet when one has low kidney function or is trying to preserve kidney function.

KarenInWA

But, low protein is better than TOO low or NO protein. That also can whack kidneys out. Never researched that bit of info, though.

[noahvale]

^

[obsidianom]

All I can add is that the whole issue of protein intake pre dialysis is very much NOT a definitive thing.  I have seen articles and studies on both sides of the issue. Honestly I cant myself really believe that a low protein diet will save any kidney or really slow down the process. I believe the type of protein MAY matter . Animal proteins are harder on the kidneys while non animal proteins are easier. I agree with Kristina on this.     The ACE inhibitors or ARBs are more important then protein reduction. I agree with the nephrologist on this. Low protein diets can damage the rest of the body . All our tissue is protein based as are our immune factors and clotting factors etc. Lowering protein MAY help the kidneys a little but at the risk of damage to other organs like the heart and liver.  So MODERATION in everything is often the best advice.   

[Athena]

Thank you Noahvale for your detailed post. I do think the recommendation of the dietician for a high protein intake in the past has become redundant - he was a bit removed from the mainstream dietary establishment from what I gather, but was highly regarded. He was not a renal dietician per se. A renal dietician at the time was telling me to limit protein intake but was not too restrictive about it because I was in early Stage 3A. My Neph was prepared to back the maverick dietician.

I've interpreted all this as signs that there seems to be debate about the merits of low protein diet in general for kidney patients where nephrologists are concerned. My Neph, I might add, is a highly esteemed Neph who has helped many patients in his long career. He is extremely sought after.

I don't really know anything, mind you. Who's to know what could be the real truth? I do seem to feel very good eating my eggs for breakfast. I feel like they're full of goodness and are supporting me.

[kristina]

Hello again Athena,
There has been a long discussion about pre-dialysis, dialysis and protein and medical diet-opinions hardly agree with each other ever on this...
... Having been a vegetarian for over 43 years, I sometimes wondered about whether or not I am doing the "right thing"...
... And the only confirmation I could possibly get to assure myself that I am doing "the right thing",
 is to study my regular blood tests and adding to that is how I feel...
and get as much information as possible to "fit" my vegetarian diet-ideas, where I "feel" particularly at home with...(instinct)
Since 13th December 2014 I have been on dialysis and yesterday I have received my second monthly blood-test results ...
... Afterwards I could ask the dietician to have a look at my blood-tests and she told me that I should continue to eat what I am eating,
because my blood-test-results came back perfectly alright and there is nothing I should change ...
I was very relieved by that, because everything I was reading about protein and diet in kidney failure is so conflicting
whilst at the same time for "us" in ESRF it is so important to keep the rest of our body as healthy as possible with the right nutrition...
It is a long learning process and might take time and the only guide-line we have is our regular blood-test-results...
Best wishes and good luck from Kristina.

[Athena]

2 grams of proteing per kilo of bodyweight??? Holy what??? For a pre-dialysis diet? Athena, where do you live? I also was put on an ACE inhibitor due to spilling protein in my pre-D days, (benazapril 10mg, was on it for years) and while yes, it reduced the protein spillage significantly, my neph recommended a LOW protein diet of approx 0.6gm of protein per kilo of bodyweight. Protein is hard on the kidneys to filter, hence the need for a low protein diet when one has low kidney function or is trying to preserve kidney function.

KarenInWA

But, low protein is better than TOO low or NO protein. That also can whack kidneys out. Never researched that bit of info, though.

Karen,
Had I followed his advice I would have had to consume about 100g of protein a day. That would be about what a male body builder with no kidney issues would be trying to consume to keep up with his weight lifting! 

I am a female with heavy menstruation issues unfortunately so that is why they wanted me on more protein than usual. Animal protein is the most easily absorbed source of iron. However I am now on iron infusions & Aranesp injections - these things do work well, even if they're not the 'real thing'.

[Athena]

I spoke to my Nephrologist today. He reiterated that he does not believe low protein diets do anything to preserve kidney function. He said I certainly shouldn't follow a high protein diet either but to keep it in moderation. Though my serum phosphorous level is always normal - I do have raised PTH levels that is above normal. For that problem I'm now taking Calcitriol. But he thinks there is room to limit phosphorous in the diet.

The only problem is - phosphorous is in every food! It's like breathing but trying to restrict oxygen intake!

So I guess this means no more dairy products like greek yogurt?

I didn't ask him about prescribing me those phosphate binders, but that is another question on my mind right now. Wouldn't it be better to not restrict diet & just take these pills?

[MooseMom]

Athena, by the time you get to stage 4, reducing the consumption of animal protein really does help to preserve kidney function.  I was on the pre-renal diet for stage 4/5 patients for 8 years.  I was told to restrict my daily animal protein intake to no more than 3 oz which I found easy to do.

Start limiting phosphorus and keep tabs on your labs.  If you want to keep consuming dairy products, pick your favorite and stick with just that one.  If your favorite is greek yogurt, eliminate milk and cheese, for example.  Since your phosphorus levels are OK for now, now is the time to experiment a bit and see which restrictions you can most easily live with.

Phosphorus binders are notorious for causing gastrointestinal problems which take the form of either diarrhea or constipation; take your pick.  Hopefully your neph won't prescribe those until absolutely necessary because binders are a last resort option.  Tweaking your diet is a much healthier option.

[Athena]

Thank you Moosemum for your great advice. I will start looking at high phosphorous foods & start limiting them. It's sure hard though!

[MooseMom]

Thank you Moosemum for your great advice. I will start looking at high phosphorous foods & start limiting them. It's sure hard though!

It's hard at first, that's true.  It's not easy to remember which foods carry which kind of risk, and it's not easy to have to think about everything you eat.  It's a real pain.  But you know what?  It becomes second nature.  But more importantly, once you realize that you are eating in a way that protects your body, it becomes SO much easier. 

I figure that you can look at it in two ways.  One, you can mourn the fact that you can't eat anything you want, anymore.  There IS a sense of loss.  OR, you can see it all in terms of keeping your body healthy.  Once I understood what high serum potassium and/or high serum phosphorus could do to me, the pre-renal diet became a piece of cake.  I instantly lost all desire for "dangerous" foods.  Just wasn't interested.

[kristina]

Thank you Moosemum for your great advice. I will start looking at high phosphorous foods & start limiting them. It's sure hard though!

It's hard at first, that's true.  It's not easy to remember which foods carry which kind of risk, and it's not easy to have to think about everything you eat.  It's a real pain.  But you know what?  It becomes second nature.  But more importantly, once you realize that you are eating in a way that protects your body, it becomes SO much easier. 

I figure that you can look at it in two ways.  One, you can mourn the fact that you can't eat anything you want, anymore.  There IS a sense of loss.  OR, you can see it all in terms of keeping your body healthy.  Once I understood what high serum potassium and/or high serum phosphorus could do to me, the pre-renal diet became a piece of cake.  I instantly lost all desire for "dangerous" foods.  Just wasn't interested.

... Same here: ... As soon as I realized, how easily "dangerous food" could shorten the life of my kidneys and my own life,
I was not even interested anymore to look at it...
... another point for "us" to think about, is, that many businesses producing food are forced to make a profit...
... and often the quality of food suffers as a consequence...
... As soon as I realized the possibility of such a conflict, I gladly cooked my food from then on every day
and on each and every occassion without any bother... better save than sorry...
... At first it all seems very unfair and appears to be lots of work, but soon "one" gets into the routine of it and shopping for food,
choosing the quality of veggies and fruit, washing and preparing the veggies and cooking our daily meals becomes soon "second nature"... 
... and it shows... not only in our blood results, but our organs and our body appear very content and gratefully as well  ...
Good luck wishes from Kristina.

[tigtink]

I'll add my two cents here on the protein debate, not to stir up controversy but to illustrate that everyone's situation is different and the same advice does not work for all. Five years ago when I found out my kidneys were declining to the point where I might someday need dialysis, I cut way back on my protein intake, following the suggested limits for kidney patients. I did this for three years, during which time I gained over 40 pounds and my kidney function slowly declined. I was severely anemic and felt worse and worse as time went on. I researched the protein issue thoroughly and realized there was no real consensus among the experts. My nephrologist never advocated limiting protein, only using it in moderation. So I experimented with increasing the protein and strictly limiting carbs. I ate limited amounts of red meat and pork, though not eliminating them entirely. I ate eggs every morning, added liberal amounts of low-carb vegetables, and got most of the rest of my protein from fish and shrimp. Over the course of two years, I lost more than 40 pounds, enabling me to get on the transplant list, and my kidney function, which had been steadily dropping, began rising and had held in the 18-20 range for over a year, with only one coming back at 16 then going back up to 18. All my other labs have improved as well. I am healthier by far than when I followed a low protein diet. I know this goes against conventional wisdom, but I've had labs every month during this time, and for me the results have been clear. I don't advocate this for everyone. Kidney disease has many causes and for some a high protein intake probably is detrimental. For me, however, the added stress to my kidney caused by the excess weight was far more detrimental to my overall health than the protein intake. I just don't overdo it. But I have protein at every meal now, and it seems to work for me.

[MooseMom]

Tigtink, thanks so much for your post and for reminding us that everyone is different. 

I'm curious.  How much protein did you end up eating per day?  What was, for you, eating protein "in moderation"?

[tigtink]

MooseMom, I have 50 to 100 grams per day, spread over three meals. I have been on an ARB for several years which has been quite effective in controlling protein leakage. I'm prepared to lower my protein intake if the labs indicate a decline, but so far I've done very well with the higher protein.

[Athena]

I researched the protein issue thoroughly and realized there was no real consensus among the experts. My nephrologist never advocated limiting protein, only using it in moderation.

Tigtink, thank you so much for sharing your experience. Honestly, I'm just like you and everyone else here - we are all trying to work out what to do & whose advice to follow!

My experience to date is that 2 nephrologists have not advocated going on a severely restricted protein diet - just eat protein in moderation is what I was told. I probably don't eat as much protein as you (4 eggs a day & a bit of meat at dinner time, occasionally as a sandwich filling, the rest made up in salads, fruit & veggies & some dairy products like Greek yogurt). I have a naturopath who has also advised me that vegetable protein like beans, legumes may be hard, or even harder, on the kidneys than animal protein. The naturopath does not believe that a low animal protein diet will suit me.

I am about to have an appointment with a renal dietician and I can just feel that the standard advice is going to be given about eating very low protein. My dilemma is that if my nephs don't advocate low protein, how on earth can I override what the nephs have told me & go with what a dietician says? 

As a diabetic, reducing carbs and therefore eating more fat & protein is a godsend in terms of blood glucose control. But I also am thin and need to gain weight - so that makes carbs much better for me. It's a real juggling act. And now the kidney problem has only compounded the confusion about how to eat.

To be quite honest, the only problem I really have where blood tests are concerned (apart from having CKD) is a slightly elevated PTH levels with normal calcium & phosphate levels, for which I've been prescribed calcitriol recently. My potassium level has always been normal. To me, the it's about reducing this blasted PTH level. The only other issue is a high propensity towards low haemoglobin levels/low iron stores - but I have heavy periods and take high doses of an ACE inhibitor - these two factors keep me on a fine line.

Once again, I am not discounting anybody's experience with a vegetarian/low protein diet. I will carefully listen to what the renal dietician & my nephs have to say as well as do a lot of research & make up my mind. I truly value everyone's contribution in this discussion! Thank you.

[kristina]

The Internet is a great link to learn as much as possible about diet in end-stage-kidney-failure etc.
... and there are also medical discussions about the best diet in ESRF to be found etc.
I wish you good luck and all the best to find the best suitable ESRF-diet for yourself,
Kristina.

[Athena]

I know my days of eating normally are being numbered as I wait for my appointment with my dietician. So that must be why I had a bad day of indulgence. I'll share what I ate today, if people can tolerate hearing a bit of horror.

Breakfast: 4 eggs, grilled tomato, cup of instant coffee with regular milk, one slice of rye toast with butter.

Lunch: Six inch Subway wheat roll with mozzarella cheese, lettuce, tomato, capsicum, carrot and mayonnaise. Followed by a 40g dark chocolate bar (71% cocoa) with a flat white coffee.

Dinner: Dark green leafy salad with mayonnaise, 75g croissant with sour cream followed by a punnet of fresh raspberries.

I am trying to gain weight and I am a type 1 diabetic on insulin. The chocolate was very bad, I know but I was feeling quite depressed today and I'm one of these people whose mood is lifted by chocolate.

I really have no idea how to eat. I really don't cook. If anyone has any suggestions of how to modify the above to improve it, I would appreciate it.

[MooseMom]

Athena, I'm not sure if you want us to have a go at amending your menu as for a pre-renal patient, but if that's the case, here is what I would do (and I speak as someone who was on the pre-renal diet for 8 years).

Four eggs is a bit much, as you no doubt know, so I'd change breakfast to one egg on rye toast.  A bit of butter is no problem.  A slice of grilled tomato is fine, but make sure it's just a slice.  I would often have a piece of rye toast with a slice of tomato and an egg on top.  I was allowed a quarter cup of milk a day, so if you want to have a splash of milk with coffee, that should be OK.  If you like cereal, a rice or corn based cereal was often my choice of breakfast, topped with berries.  I still eat this way even after transplant.

Lunch:  Again, if you will be having a pre-renal diet, replace the whole wheat roll with a white bread choice.  You'll probably have to lose the cheese.  Dark chocolate is good for you, but this is where portion control becomes crucial.  A whole bar would be too much, but an ounce would be OK.

Dinner:  Unfortunately, dark leafy greens are too high in potassium, but boring old iceberg is a better choice.  Romaine is OK.  Sour cream is dairy, so you'd have to rely on portion control.  Fresh raspberries are a very good choice.

Once you've seen the dietician, come back and let us know what s/he said, and then maybe together we can come up with some menu ideas for you.  I'm really eager to hear what advice you are given.

[kristina]

Hello Athena,
I agree with what MooseMom has alaready mentioned...
4 eggs is what I would eat in a whole week and instead of a grilled tomato and I would rather go for a grilled slice of tomato now and then...
...with "instant" coffee I am a bit careful of what I am going to get...
...and because of this, I regularly buy from a coffee-roasting-shop fresh coffee beans,
which are mainly a very mild roasted Continental coffee-blend ...
... and I always grind the beans myself at home...  I don't use regular cows-milk because of a possible growth-hormon-involvement ...
... and I don't use butter for the same reason...
I usually start my breakfast with a small bowl of "Crunchy Nut" (Kellogs) mixed with almond milk,
then I have a little dish filled up with half a peeled apple in small pieces mixed with half a peeled pear, also in few small pieces,
and on another dish I have half a slice of toasted bread with a little peanut-butter spread on it
and finally one cup of coffee with a little bit of sugar and a little bit of almond milk...
... I always listen at breakfast to an LP with music of my favourite Baroque composers,
because their compositions introduce me very smoothly into the new day...
Your Lunch: carrot and lettuce sound very good, but I would rather cook the carrot in a soup and use the lettuce for a tasty salad  ...
Your dinner: dark green leafy salad would frighten me a bit because I would not like to challenge my digestion and I rather cook very dark green leaves
together with my "soaked-overnight" lentils for about for ~35 - 40 minutes to be on the safe side...
Please ask your dietician about what to eat and how to cook your food (there are also many options of how to cook what on the Internet,
but I would be careful there as well, because there are quite a few "try to be overly healthy" cooks
who cook many "hard" vegetables only for a few minutes 
and I would not really entertain this because I do not wish to over-challenge my stomach ...
... When I tried to learn how to cook what, I looked it up on the Internet and I specialized to learn from "grandmother" recepies,
because these recepies have prooven over many generations to be kind and gentle to the stomach...
Best wishes from Kristina.

[Athena]

Moosemum and Kristina, I just wanted to thank you so much for your detailed replies. There's a lot of detail to take in & I will keep coming back to read your replies & work my way through them as I prepare for the meeting with the renal dietician. A big thank you to you both!

Just some immediate general comments. My serum potassium levels have always been normal & even when recently sick, they were still normal (in the mid range of normal healthy levels). So I'm thankfully not needing to worry about limiting my dietary potassium intake right now.

Where I have a problem is my elevated PTH levels - which indicates my kidneys cannot handle all the phosphorous I'm eating. My serum phosphate & calcium levels are still within normal range - but the raised PTH levels shows that my poor kidneys are struggling to keep the balance & I am taking calcitriol now. So what this means is that I need to look at limiting high phosphorous foods.

I can easily substitute the whole grain bread for white. That can be done, although a lot of white heavily processed breads tastes awful to me. Sourdough bread tastes quite nice, is that one okay for us?

My Nephs haven't forbidden me to eat my eggs as they are a good source of protein. My 4 eggs a day are fried in olive oil and they just go down quite easily I find. Perhaps the renal dietician will disagree strongly about my eggs, I will see. I probably can easily give up eating cooked meat but I would need to keep my egg habit for the protein that I still need. I just love them!

One other thing that I've noticed recently is that I am feeling very hungry and craving food! I am pleasantly surprised by this because when I was sick recently, I had lost a lot of my appetite. Now it seems I am very much recovering & my body wants a lot of food.

So there is another horror story today I'm afraid. At my favourite cafe in town, I had a raspberry muffin with a cappuccino. That was after I had a small vegetarian pasta dish. Honestly, I could have eaten more after I finished all of this! I don't know what's wrong with me but it sure doesn't feel like a bad sign. I'd be more worried if I didn't have an appetite. I'm praying that I will now gain some weight soon.

The battle continues ...

[MooseMom]

Athena, this is why it is good that you are seeing a renal dietician!  We can give you all sorts of "this is what I did" stories, but frankly they're irrelevant.  I assume that your dietician will have your labs at hand and will use them to tailor a diet that fits your needs.

Too many dieticians settle for only telling you what not to eat.  So, make sure that yours gives you ideas for substitutions.  Keep asking, "If I am supposed to avoid that, what can I eat instead?"  So, if you should avoid whole wheat bread, what will work instead?  And one answer would be sourdough!

People with CKD also have problems with high serum cholesterol and triglycerides.  I always ate a healthy diet and enjoyed exercising, so imagine my surprise when, at my very first set of labs 11 years ago, my cholesterol was 550 and my triglycerides were 2200!  My docs had NEVER seen numbers so high.  High blood lipids and severe CKD go hand in hand.  My doc told me, and I quote, "You could eat cardboard for the rest of your life, but you'd still have high cholesterol."  Medication brought those numbers down very quickly and very efficiently and have been good ever since, but I still watch what I eat.  That's why I have concern about you eating so many eggs.  But if that's the nutritional advice you have been given, then by all means continue to eat those eggs.  They ARE good for you and provide many micronutrients (I cook mine in olive oil, too!), so enjoy!

I'm very glad to hear that your appetite is improving.  Food is fuel!  Well done!