PKD and ketosis: A layman’s take

I participated in a webinar about research into Polycystic Kidney Disease (PKD) and ketosis the other day and was quite pleased to hear such a measured take on the topic. Of course, as the webinar was presented by the very man who is doing the research, so it shouldn’t be surprising!

Disclaimer: I am not a medical professional, nor do I have any professional health, nutritional, or fitness qualifications. This post is about my personal layman’s understandings of the PKD and ketosis webinar and related topics. It is meant as an informational starting point—not as medical advice. Please consult your medical team before making any dietary changes, or if you have any questions and concerns about your own health.

The webinar, “Ketosis and Crystals: Can diets help treat polycystic kidney disease (PKD)”, was presented by Dr Thomas Weimbs of the Weimbs Laboratory at University of California Santa Barbara (UCSB). Dr Weimbs and his team investigate the molecular mechanisms underlying PKD and potential new therapies in the treatment of PKD.

In late-2019, researchers in Weimbs’ laboratory published a paper called Ketosis Ameliorates Renal Cyst Growth in Polycystic Kidney Disease in Cell Metabolism. The research is based on animal models, so cannot be directly applied to humans, but the work provides a solid foundation for research into the effects of ketosis on PKD in humans. Due to its potential application in humans, the paper and its various laymen’s reviews in the media were quick to make its rounds in the PKD community, prompting a great amount of interest and discussion among PKD communities around the world. The excitement from the paper was the impetus for the webinar, as people are keen to hear from people who might have a viable, long-term treatment for PKD.

The full webinar is available on YouTube here.

Full paper citation: Torres JA, Kruger SL, Broderick C, Amarlkhagva T, Agrawal S, Dodam JR, Mrug M, Lyons LA, Weimbs T. Ketosis Ameliorates Renal Cyst Growth in Polycystic Kidney Disease. Cell Metabolism. 2019; 30:1007–1023.

However, as with a lot of scientific research that hits the mainstream, some people have taken the highlights of the research out of context. Indeed, there is a belief by some people that a keto diet has now been proven as the best way forward for PKD patients. Worse, some people are adopting dangerous “fad-keto” diets that include the use of “specially formulated” rubbish that is meant to mimic ketosis for weight loss.

Since the research has gone mainstream, I have received a couple of messages asking for my thoughts on a keto diet with PKD. Not because I am an expert on keto or PKD, but rather because I write about my experiences and have always been open to conversations with others about their experiences. (I direct you to my disclaimer, which in summary says: I am NOT a medical doctor and I cannot provide medical advice.)

So, for those who’ve asked me directly as well as those who’ve found my blog by randomly searching for PKD-related content, here is my take on PKD and ketosis.

Disclaimer: I am not a medical professional, nor do I have any professional health, nutritional, or fitness qualifications. This post is about my personal layman’s understandings of the PKD and ketosis webinar and related topics. It is meant as an informational starting point—not as medical advice. Please consult your medical team before making any dietary changes, or if you have any questions and concerns about your own health.

First of all, let me say that I am very excited about this research and the potential for its application in humans with PKD. I am especially excited about Weimbs’ research looking into ketone-based supplements that are specifically designed for people with PKD. Yes, it is fair to say that I am cautiously optimistic!

Now, let’s get down to my wider views on the topic.

My thoughts on keto/ketosis-based diets (in general)

To start with, I think of diets as healthy lifestyle diets (good) vs weight-loss diets (potentially bad). And when it comes to keto-based diets, I view them as medically led ketosis-based diets (good) vs (fad)keto-diets (potentially bad). However, as with most things, there are extremes of a continuum. And it’s the extremes that generally get people in trouble.

One extreme end of the (fad)keto diet, there is an entire industry built on the idea of selling supplements and non-food nutritional fixes to aid in the process of ketosis. These products tend to have high levels of beta-hydroxybutyrate (BHB), a “key ketone” (if you’ll excuse the pun), and similar “good for you” ingredients. But they also tend to have high levels of sodium, magnesium, potassium, and other “stuff” that might not be good for people with chronic kidney disease (or even “healthy” people in some cases). And for the most part, these supplements are created and marketed as weight-loss products. This is important: These supplements are not designed for long-term health; they are designed for (generally rapid) weight loss.

Another extreme of the (fad)keto diet is that of “just eating the right things”. Only, people aren’t necessarily eating the right things. A simple search for keto recipes delivers a wide range of high-fat, high-animal protein (red meat!) combinations that avoid starchy carbs at all costs, and only include health plant-based goodness in drips-and-drabs. And sure, there are also many healthy recipes out there. But (wo)man cannot live on salmon, avocado, and egg alone. (But I do love a nice bit of baked salmon with avocado and poached egg. Yum!)

The problem with these (fad)keto diets is that they are picked up with good intentions and great expectations, but for most people they are not sustainable in the long-term – especially for people who fall outside of the “healthy” population. With the fad(keto) diet recipes, many people run the risk of inadequate nutrition and in some cases, too much fat, too much sodium, and too much stress on the body’s essential functions.

But that’s not to say that a keto-based diet can’t be healthy. Indeed, for several years now the science has suggested that there are some great medical reasons why entering a state of ketosis can be a good thing. Which is where the problem with (fad)keto diets comes in: If a ketosis-based diet can be healthy and even doctor-prescribed or recommended, then keto must be good and therefore all things keto must be healthy. Right? Well, not exactly…

That’s because a healthy ketosis-based diet is one that is based on medical advice that is appropriate for your personal situations. Especially if you are looking at a long-term or life-long change to your nutritional diet (as opposed to a weight-loss diet). Whilst the (fad)keto-diet is (often) based on quick Google searches and predatory marketing schemes.

Note: I am not suggesting that you can’t find healthy ways forward with keto using Google and supplements. I am just suggesting that health and nutrition experts are right when they talk about the potential hazards and recommend proceeding with caution. So, back to the disclaimer: Have a chat with your medical team first.

My thoughts on healthy diets (in general)

I have always been a believer in the “everything in moderation” principle when it comes to the way I eat. In fact, Michael Pollan’s writings are some of my favourites when it comes to human approaches to food. I’ve never shunned entire food groups, and I’ve always enjoyed a bit of “junk food” as part of my overall diet. And for that matter, I don’t “diet”. Rather, I just maintain a healthy diet.

For me, that means that I eat a lot of “whole foods” and I prepare as many of my meals as possible by myself with fresh/whole ingredients. However, I also eat my fair share of junk food and even (shock, horror!) overly-processed foods. Oh, yes. I love my junk food. But I try to treat junk food as “rewards” for eating the healthy stuff most of the time (and being active as much as possible).

As my kidney disease progresses, I am aware that what defines a “healthy diet” will need to change, too. When I (eventually) near kidney failure and face the potential of dialysis, I might need to make some pretty big changes to my macro- and micro-nutrients.

There are a few things that I can do with my healthy diet to help my kidneys now. A lot of those things are related to maintaining my blood pressure, cholesterol levels, and overall physical health. So, over the years, I have made a range of “small changes” to my diet to keep me going. I have worked to eat more fresh produce every day whilst limiting my meat and cheese intake. I have also been working to limit my sodium and caffeine, only enjoy one lovely cup of coffee a day (most of the time).

I also try to limit my overall alcohol consumption. I drink fewer than the recommended daily allowance (with occasional exceptions) and drink far, far less than the allowances over the course of a week. I also take days or weeks off of The Drink at regular intervals. This is my way of making sure that I never get into a habit of drinking every day or even most days.

And, of course, I drink a lot of water! A big part of that is because I am on tolvaptan (the only current “treatment” for PKD) so I need to stay well-hydrated with that. But even before I started taking the medication, I have tried to drink a lot of water.

But I get it. Not everyone has the cooking skills that I do. Or the means to cook (and store food) that I have. I would argue that everyone has the time or energy, but I also understand that people prioritise their time and energy differently than I do. So, please don’t think that my sharing “my” way means that I think my way is the only way. I digress…

My thoughts on how keto fits into my life (in general)

So, those are my general thoughts on keto and healthy diets. But I don’t necessarily see the two things as completely separate.

I have been reading quite a bit about (fad)keto diets over the past few weeks, really focusing in on the idea of limiting carbs as a way of producing a ketosis effect. When I think about my diet, and the average western diet, I am aware that there is a high reliance on carbs for energy. Indeed, I eat carbs in the form of bread and pasta, fruits, and even (shock, horror!) sugary treats such a candy. Although I do eat them as part of a balanced diet.

Is it possible that I am eating more carbs than I need? Absolutely! But I also know that swapping the carbs for butter in my coffee and a stack of medium-rare steaks isn’t the answer to good health.

But the keto diet plans also tout trout and other healthy fish. They steer people away from margarine and towards butter and other “healthy fats”. They sing the glories of avocados and eggs and of water, water, water.

And those things? Well, they are already staples in my healthy eating lifestyle.

That’s not to say that I am willing to go full-on keto, especially not full-on (fad)keto. But after participating in the webinar, and reading Weimbs’ research on the matter, I am willing to give keto(lite) the benefit of the doubt. In fact, I have already talked with my medical team about small changes that I want to make to my diet based on this research.

For me, that means that I will work to downplay carbs in my diet whilst working to find a good balance with the rest of my diet (still keeping sodium and excessive red and processed meats and cheeses at a minimum). I will also continue to avoid (fad)keto supplements that have not been properly tested with FDA oversight. With luck, the subtle changes I am making will show some positive changes in my overall blood work. With even more luck, these changes will help with my overall health, leading to more energy and better running times!

To summarise…

Ultimately, I will be waiting for human studies to show just how great ketosis might be for PKD in humans before I go “full keto”. More so, I will be keeping up to date on Weimbs’ work on supplements specifically designed for PKD patients (complete with human trials to show it works!). What excites me most about the potential for ketosis and PKD is that it might be an option for people from the moment they are diagnosed – which is another argument for having children of PKD parents tested early-on.

My main takeaway for others is simple: A ketogenic diet might be safe, but I cannot stress enough the importance of including your medical team in any (major) changes to your diet and lifestyle choices. There are certainly small tweaks and adjustments that you might be able to make without consultation, assuming they are within the general scope of your existing medical and nutritional advice. But before you jump on the (fad)keto bandwagon, it really is important that you (1) read up on all of the pros and cons related to different forms of keto and (2) talk with your medical team about the pros and cons of keto specific to you and your circumstances.

Disclaimer: I am not a medical professional, nor do I have any professional health, nutritional, or fitness qualifications. This post is about my personal layman’s understandings of the PKD and ketosis webinar and related topics. It is meant as an informational starting point—not as medical advice. Please consult your medical team before making any dietary changes, or if you have any questions and concerns about your own health.

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