7 odd years since I was diagnosed with CKD per chance. 3a. Got a nephrologist who said I had very slow progressing CKD. Little action over the years other than ACE a few years in to aid proteinurea / lower slightly elevated BP and the advice to perhaps trim red meat consumption.
Had a moderate bout of Covid Jan this year. Whether or not related to that, my annual bloods shows eGFR drop from stable mid 40's to mid 30's. 2nd follow up a few months later showed eGFR30. Oh dear!
Arising from that and from the seemingly unalarmed response of my nephrologist I read around and ended up on a very low protein + keto analogue diet. I'm 3 months into plant based and 2 months into vlpd +keto (sVLPD)
My nephrologists response to my (unilateral) dietary action was to obtain me a renal dietician. I had been told previously that there was little chance of obtaining one - they only operate at end stage territory in my country. So much for forcing the issue!
This is what she said/conveyed:
1. Intrigued/excited at the prospect of someone threading this path. She's aware of the sVLPD approach but The System hasn't yet got around to advancing it in Mainstream where she operates. Mainstream is operating according to NKF 2020 guidelines, something heard frequently around here.
2. Is happy for me to continue with sVLPD and is herself getting herself up to speed on how it runs in practice: what's in the keto, where I get it, how much I take. I sense she's delighted at the opportunity to thread this path with someone. Which renal dietician wouldn't be interested in tackling CKD at a far earlier stage of the disease. Tackle the disease in a preventive (as in prevent or delay dialysis) fashion.
3. She put me through my paces re: my motivation. She seemed to want to be sure this wasn't a passing fad before she put in the effort. This marries with what appears in the literature: dietary conformance (or lack of it) is the chief concern for implementation of an sVLPD. Folk, in the main, simply aren't prepared to do what it takes.
4. When queried why an sVLPD approach isn't being grasped with both hands by The System, she more or less cited:
- System Drag. It simply takes time to get The System to change it's ways. This corresponds with indications that it takes 17 years on average for practice in the street to catch up with the science
- in Ireland's case, there was a sheer lack of resources. Renal dieticians and nephrologists are thin on the ground. They are kept busy dealing with end stage and transplants. Seems bizarre to be leaving prevention to one side but if you're busy sticking your finger in a dyke you can't get around to preventing the hole appearing in the first place. Short term view but that's probably the way things work across the board. There are budgets and the most urgent things get the money first. If there's nothing left over for prevention then so be it.
5. Kidney cases have rocketed. Ireland doesn't have a joined up way of detecting CKD (as in routinely checking for it whenever someone walks into a doctors/hospital). But it seems 1/4 Covid hospital cases have produced kidney damage. A Tsumami awaits..
6. It makes sense to have a renal dietician on board for an sVLPD. Unless you are going to learn everything there is to learn, you could leave a hole where you're doing the wrong thing without knowing it. My dietician (now that I have one I can say that) felt my salt intake was too low and explained why. I'll check out what she has to say, but it's a relief to have the sense of someone covering my back. Not to speak of the prospect of adding a bit of salt to flavour food!
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Hi Skeptix, Very interested in your work on this diet. I had to Google some of your terms such as SLVP : Supplemented Very-Low Protein Diet. I too am very SLVP and have done some consultation with my nephrologist, and fundament medicine doctor, and my dietician and NO one was on the same page. The Dietician is renal and she herself is WFPB. She say keep the low protein, stay away from animal protein at all costs. But no one was talking supplements accept the Fundamental Doctor. I am curious, what supplements do you take and why?Thanks.
I suppose at my age (57) the gloss has worn off the idea that the world can or does function well. Inefficiency, politics, finance, a lack of desire to grow own knowledge ... describes both me and the industry I work in. Why should medicine be any different! No surprise then, when my renal dietician talked of the lack of joined up thinking in the kidney medicine field.
At least the dietician and nephrologist know each other, but this sVLPD gig is new to both of them in the sense of actually dealing with someone running that diet.
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The route of going very low (0.3- 0.4g protein/kg body weight) instead of low, stemmed from the sense Lee Hull made. Rather, the sense the science he dug up made
Protein = urea. Urea = toxic/kidney toxic =》cut down the protein as much as it takes to get your serum urea back in spec.
And that is precisely what occurred to me: after a couple of months on ketoacids, my serum urea has moved to well inside spec from being waaay out of spec! 13.5 to 6.5 or so
The supplements are keto acid analogues (a.k.a. protein with the nitrogen (a.k.a.urea) element removed). They give you everything that dietary protein gives you, without the urea downside. I've opted for Lee Hull's version (Albutrix) because:
1. His is a low calcium version (his has a magnesium root instead a calcium root) and his thesis limiting calcium intake sounds right (one of the alternative products, Ketorena, is a calcium-based keto acid. It would find me hitting my RDA calcium intake from the keto alone - I'd then overshoot when dietary calcium is added).
Hull says his has the lowest nitrogen (urea) content of them all. I'll take his word for that.
2. They are the same price as the only alternative I could find, US based Ketorena. The version that appears in the literature frequently, Ketosteril, I cannot find except on sites priced in Indian Rupees. I'll pass on that thanks.
3. His version is formulated to suit the stage you're at. Me, stage 3-4. A different formulation applies at a different stage. Ketorena have a single formulation.
4. He throws in a multi vitamin formulated for folk on a sVLPD for 'free'. I'm sure there's alternatives but having checked out a few, I see problems with them. Takes that job off the list if I just run with Hull.
5. I'm happy that Hull is an imperfect evangelist. Someone who has found God and is shouting from the roof tips so that everyone else can too. As opposed to being a snake oil salesman. Heck, if the NKF as promoting a sVLPD...!!
The basic idea is that if you go very low (say 0.4g/kg body weight), you have to supplement the protein else you'll become malnourished. And ketoacids are the way you do that. My renal dietician said that in the US, 0.6g/kg body weight is considered a sustainable protein intake. On this side of the pond its 0.8. Either way, neither of those are very low protein diets
So, ketos it seems it must be, if going very low. And very low reduces urea it seems.
I'll see how things go. If urea stays in control I could start raising the plant based element and reducing the keto element. Hull's mode of operation tackles any number of factors. It can be that kidney function improves (e.g. if inflammation is present that will reduce kidney performance. Remove the inflammation via diet and performance improves, even if the damage remains). I'll consider this come the time and after figuring out whether there's any other benefit from staying very low protein aside from lowering urea load.
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As for whole food. Hull's approach is to hit every factor indicated by the science. For example: get your BMI to the top end of the healthy range (I'm in the middle of that range). Reason: a CkD-er is more likely to end up in hospital. Folk going into hospital with a bit of weight on do better than skinny folk! So, not just kidney health related action, but everything that can be done to improve odds.
One area of import was avoiding an acidic diet (or steering clear of acidosis) And so wholefood isn't necessarily best. White rice, for instance, has a lower acidic load than brown rice. I haven't investigated fully but its something to bear in mind. What appears healthy might not necessarily be optimal from a kidney perspective. That said, my Cronometer app shows me at the bottom of the alkaline dial, in the green and miles from the acidic zone. So perhaps I could cut myself so.e slack!!
I would encourage anyone to consult your Doctor before you enter or change your diet. One size does not fit all, what might work for one does not necessarily worked for another.
I certainly wouldn't discourage consulting your doctor (indeed, informing mine of my new diet resulted in access to that rarest of beasts: a renal dietician.
But if your doctor says 'no' then you've to decide whether they are giving you the best advice.
In other words: YOU have to know how to assess your doctor!
Keto acid analogue. Nothing at all to do with keto diets. KAA's are (effectively) proteins with the nitrogen part removed. The nitrogen part of normal proteins is what turns up as urea in your blood. A waste product. A toxic product.
In other words, KAA's are a cheat. You get the protein but without the urea downside. Like beer that gets you drunk but doesn't give you a hangover
I get it - so it's not a food but a protein supplement (w/o nitrogen). This is the part that confuses me the most....I can do plant based easily but there are actually vegetables that you are not supposed to eat if you have renal issues (like broccoli and tomatoes for example). This really narrows the field from which to choose!
These are my "out of specs": eGFR 36; creatinine 1.43; alb/glob ratio .08And for some strange reason my folic acid is twice as high as "high normal" (too much kale???)
Another concern: How much would I have to eat to NOT lose weight?
Didn't know there was supposed to be an A/G ratio. Never came up anything I've read. I gather though that getting albumin up to the top end of the scale is the way to go..
Agree on trying to keep up weight. I struggle to keep up the calories. I've been told to target 2200 kcal with a body weight of 64kg. Always a struggle. I have to keep eating through the day, if I forget, I can't make it up.
Am mid healthy BMI but gather I ought to be at the higher end of normal.
Urea meaning BUN? Yup it's 21 mg. I think this whole kidney problem of mine was caused by blood pressure medication so my specs might look different than others.
About eating, I was kind of anorexic until into my 40s and I really don't want to go back there.
So, how long have you been taking the KAA? Do you mix it with food or is it in pill form? How do you feel after taking it?
2 months on very low protein + kaa. Another month on plant based waiting for the kaa to arrive.
The one I take is pill (Albutrix: 5 grammes of protein equivalent per pill, so 4-5 a day). Another brand (ketorena) does powder. Don't notice any change with either the diet change or taking kaa's. Just urea and cholesterol have taken a sharp turn for the better.
Interesting: you're not filtering creatinine well but are just outside the upper range on urea. Now kaa's are, to my knowledge aimed at reducing urea, so if you're filtering urea then what advantage?
But you are just outside range for urea, right (20mg is the top end I gather). It could be that you go a bit of the ways: lower your dietary protein a bit and supplement with some keto? That would mean less problem hitting calories whilst perhaps pulling urea to the middle of range. Just a suggestion, as I'm exploring myself.
Certainly you need to focus on calories and type of alories. Indeed being at the top end of the normal BMI appears best place to be.
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It's murky territory but I gather that you can eat what you like so long as your kidneys can handle it. Potassium, for example, isn't kidney-problematic until your kidneys can't filter it - that's straight from a renal dietician's mouth. But there is of course sodium. And you'd have to query calcium - can you really eat what you like?
Reading Lee Hull's book for the 3rd time. Its dense so not read in one go. You looked at it? It's a bit of a treasure trove of info..
If you have any degree of ckd your kidneys are already struggling. The goal is to take the pressure off your kidneys, so from my perspective, you eliminate the most likely causes of pressure, including BP, weight, and, of course, dietary stresses. Individuals may well seem to tolerate elements such as sodium and potassium, with blood tests not red-flagging their levels, but if these, and certain foods, can be damaging to the kidneys, it seems wise to avoid them in order to prevent the progression of the ckd. My partner has ckd, stage 4 or close to at the last egfr count, with other conditions that require dietary restrictions, making things complicated. However, it has always been mystifying that his creatinine has been the only concerning kidney-related level, which many allowed foods seem to have a negative impact on, unfortunately, and exercise, too, has to be limited. It's certainly a minefield, to which there is no one-size-fits-all solution. I hope you have found the one that fits you!🙂
Absolutely agreed on reducing pressure on the kidneys. I'm an engineering manager in industry and the first thing you do when equipment is struggling, is to remove/reduce the load. Then transplant!
I had an opening chat with a renal dietician on KidneyRD.com and tried to get clarification on this issue. She said potassium wasn't an issue (whereas we know sodium is).
It would seem to make layman's sense to take every bit of workload off your kidneys that you can, but if your kidneys have absolutely no problem handling a particular something then you could be wasting your time trying to "help them out" on that something.
The trouble is finding out what needs to be restrained (we know about sodium for instance). Certainly a complicated field...
Tackling the doctors is probably the hardest bit. I'm not a shrinking violet by any means but you need to keep doctors on board since you can't really do this on your own. Fortunately, the renal dietician I've been hooked up to seems keen and supportive. But I'll keep on learning so that I can occupy the co-driver seat when not in the driving seat myself!
I’m reading with great interest your posts and comments and I’d be interested to know what is in your diet. I have recently stopped eating read meat, chichen, pork and fish, I’m eGFR 23 (was eGFR 17 in Oct 2020) Urea is 11.7 -creatinine 202. Potasium and Phosphates have always been normal. I have BP.
0.4g/kg dietary protein (plant only, bar an occasional omelette or a bit of butter in my mashed potatoes). No dairy.
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0.4g/kg keto acid analogue supplement. I take Albutrix but there are others, Ketorena being one that's available.
At 64 kg body weight that means 25g dietary protein + 25g equivalent protein by way of ketos to reach 50grammes protein a day. Each pill is worth 5g equivalent protein.
Thus I'm on a 0.8g/kg protein regime.
[In practice, I'm struggling to maintain 25gr/25gr. There's protein in everything! I tracking everything I eat on the Cronometer app (a free app which is pretty darn good). I don't track every day - if I miss a day or don't complete a day, it doesn't appear in the trend data. What I've found that I'm hitting a steady 30gr dietary protein intake meaning I'm taking 20 gr keto (or 4 pills a day). Thus, it's a 30gr diet/20 gr keto regime in practice]
I don't see a practical way to contain protein intake unless you track it.
Other than that, just plant-based fruit and veg as I choose - I'm not limiting anything yet other than keeping sodium in check. Before my diet started (2-3 months ago), only urea, creatinine and cholesterol were out in my bloods. Now urea and cholesterol are in spec with only creatinine out.
It makes sense that putting less protein in means less urea waste product produced. And it makes sense that no animal in = less saturated in = lower cholesterol.
My urea went from 13.5 to 6.5 or so within those few months. My cholesterol went from 6.6 to 5.4
I have been referred to the dialysis unit and was seen by the kidney nurse today. She was asking me about my diet. I explained I was trying to cut down on meat products and eat more vegetable based meals. She looked at me as if I had just been beamed down. She asked why I was doing that. I said i had read a few articles regarding plant based diets and the benefits of reducing animal proteins. She said as i was losing a lot of protein in my urine, I should be doing the opposite??? I should be increasing my animal proteins? She told me to stop googling things and stick to what the dietician advises when I see them. She said my potassium levels etc were fine, so so I wasn't to jeopardise that. Im not convinced by what she had to say. When I first started seeing my consultant I mentioned I sometimes had some energy drinks. He said as long as it wasnt apple juice it was fine. Which again threw me. I keep us up to date with your journey. Im based in Glasgow x
No not yet. My Gfr is at 14. I have been referred to the dialysis dept to prepare me for going on dialysis, eventually. Im obviously wanting to delay this for as long as possible!!
Okay. You'd want to run this by your nephr and try.to get a renal dietician to support. A very low protein + keto acid analogue diet is indicated as kidney preserving. It's not particularly radical (since you maintain a sufficient protein diet and otherwise its largely a vegan diet.
You doc may not be familiar with it but that doesn't mean you ought ot give it a whirl. Renal dietician backup would aid your maintaining good nutritional status. Get in contact with them and see why they say. Cite the NKF 2020 KDQOI guidelines - this is mainstream stuff.
Check out stuff on this site: Lee Hull / Stopping Kidney Disease (his book) / (very) low protein diets.
Sorry Skeptix, I just noticed your reply!! Thanks for getting back to me. I have started reading Lee Hulls book and it is certainly a valuable tool I will be following. I am due to get bloods done at the end of October. I will update with any progress. Hope you are well and thanks again x
Best of luck with it. I've had fairly good initial results (urea (uremia in fact) down 13.5 to 6.4 (range 2.5-7.8). In range! Cholesterol from 6.6 to 5.4. Do run by the docs and if resistant probe as to the reason why. (my nephrologist wasn't resistant. Indeed, it was taking such "radical action" that saw me obtain the services of that very rarest of beasts for a stage 3b CKD-er: a renal dietician". They are happy for me to continue a very low + keto diet). If you do go the vlpd+keto route, albutrix, ketorena and ketosteril appears to be the keto acids available. The first two are US-made I gather, the latter I can't seem to find other than quoted in rupees, so that one is excluded from my perspective - even though ketosteril is the one frequently mentioned in the scientific papers as being used during trials.
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