PKD keto diet – 18 month update and Q&A

Last year I created a couple of posts about my experience with intermittent fasting, polysystic kidney disease and my plan to try the vegan keto diet. Since then I’ve gotten a TON of questions on those posts and videos. While I tried to reply to as many comments as possible, it was clear that there was a lot of information dotted around video and blog comments. So I decided it was time to collate everything in one area. So this is my PKD keto diet update. Did it help my increase my GFR? Reduce my creatinine? Let’s discuss!

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PKD keto diet update – GFR & Creatinine

As I mentioned in my previous post, after seeing the 2019 research about the benefits of ketosis for PKD I decided to give it a try. My reasoning was that this was just a diet change. After checking with my nephrologist I started my PKD keto diet on January 1st 2020. In June I had new labwork and my annual nephrology appointment. Comparing them to my labs in 2019 there was a significant difference. GFR increased by 13 and Creatinine decreased!

While these results shocked me, in a good way, what was more noticeable was that I felt great! Flank pain was gone. My liver cysts seemed happier. I genuinely felt better all round. So, I decided to continue the diet. Last month I had my annual appointment and new labs. And my numbers are improving! GFR still increasing, creatinine still (slowly) decreasing.

Last Summer I took part in the PKD keto diet case series study. And although the full results has not yet released, everything looks promising. My story isn’t one of the PKD unicorn. Many of the participants found that the Keto diet positively impacted their health and their PKD numbers, while helping reduce their symptoms.

Questions & Answers

While most of the questions I received were about kidney function many were about PKD or the my keto diet in general. Again, rather than scouring through the videos trying to find answers, I’m collating the information in one post. Albeit a long post.

Are you still on the keto diet?

Yes. I’ve been following this PKD keto diet since January 2020. Honestly, even if my GFR or creatinine hadn’t improved I may have kept on the diet as I simply felt better. The fact that the numbers prove it’s working has been a bonus.

Did the kidney size change due to the keto diet ?

Truthfully, I don’t know. The animal studies showed reduction in kidney size and this was one reason for me to try this diet. Because my kidneys are large and at times uncomfortable. However, due to the pandemic, and honestly feeling great I don’t see the need to put myself at risk just to see if the kidneys have shrunk. I feel good, my labs are good. That’s enough for me. I do have my measurements from my last CT in 2019 and I am curious, but for now, I’m ok not knowing.

Is it okay to drink water with this disease?

It really depends on the stage of the disease you’re in. Speak to your nephrologist and/or a renal dietician to determine your hydration needs. That said the one drug that has shown to slow this disease does so by encouraging patients to drink more water. I cut out the middle man (drugs) and hydrate a lot.

What stage of PKD do you have?

In 2019 I was teetering on the border of dropping into Stage 3. Since the keto diet I’ve bumped back up firmly into stage 2. For my age “normal” would be around 95-99. To be frank as long as it’s stable, I’m happy. PKD runs rampant in my family. With four of my family members affected, and my grandfather passing away from complications from this disease. Knowing your numbers is super important.

Stage 1	GFR above 90
Stage 2	GFR 60-89
Stage 3	GFR 30-59
Stage 4	GFR 15-29
Stage 5	GFR Less than 15

How did you find out you had pkd?

This is a genetic disease. There is a 50% chance of passing this down to children. Due to my family history, I was tested with an ultrasound when I was 18 years old. At the time, I already had multiple cysts. Back then they mistakenly believed 18 was the ‘cut-off’ for the disease manifesting. Since then, thanks to science, researchers have isolated the genes responsible for the disease and genetic testing is available.

When you first discovered you had PKD did many cysts appear on the ultrasound?

Back when I was diagnosed as I recall I had just a few. Maybe 3-4 in total. Now my chart says “numerous”. When I looked at my last CT there was quite a lot, and I only saw one still. Now, years later, I also have liver cysts which is common for PKD patients.

When did you start showing symptoms and when did the cysts start? How old are you now?

The cysts were there when I was 18, but the disease has always been there. It’s genetic. So the gene was switched on in utero. Before 2019 I only had the occasional few bad days a year when my kidneys got pissed off. This lead to me naming my kidneys “lumpy” and “grumpy”. Currently, I am 49 years old.

Would a kidney transplant help you?

At the moment? No. My kidney function is too high to even think about a transplant. Typically as PKD progresses and kidney function lowers when your GFR gets to 20 is when dialysis needs to be discussed. A GFR under 10 is transplant territory. My mother is currently on dialysis three times a week, and was recently added to the transplant list. This will be her second transplant. Again, this disease runs rampant in our family.

Do you still have pkd?

Yes. It’s a genetic disease. Until the crispr technology gets used to edit PKD genes this will not change. Despite what some websites and “doctors” claim on the internet this disease HAS NO CURE. There is ONE drug to help – Tolvaptan. But it’s not suitable for every patient. Again, PKD has no cure so yes I still have this disease.

What was your maximum creatinine level before you started intermittent fasting/Keto diet?

Due to us moving country and medical providers, I only have labs dating back to 2013. Since 2013, 1.05 was my highest creatinine level. I know some countries measure creatinine differently, so for reference, I am in the US.

If I follow healthy lifestyle can I avoid dialysis and control creatinine level in future? Will the keto diet and intermediate fasting help me ? 

So the reason I share my journey is to help others. It’s my firm belief that genetics load the gun, but diet and lifestyle pull the trigger. Yep, got crappy genetics. BUT, I will do anything I can to prevent my kidney decline. Nobody can predict if this will help you. However, you could stay on the path you’re currently on and continue to decline or do something proactive. I choose proactive!

Does Keto diet include high dose of potassium?

Like any diet, it can. It really depends on what you eat. And what stage of the disease you are in as to whether potassium is a problem. Foods high in potassium like potatoes, legumes, and whole-wheat are automatically excluded on a keto diet. However their may be other keto-friendly foods that are higher in potassium you enjoy. As always, discuss with your nephrologist and renal dietician to discuss your particular needs.

You increased the sodium isnt that awfull for the kidneys?

After obsessively watching my sodium consumption for years to keep myself below the RDA of 2300mg I suddenly found myself needing to add sodium to my diet. Why? The keto diet causes the body to work differently and you lose sodium from the body in ketosis. Plus the change in foods should mean you consume less processed foods that are loaded with sodium. Lack of sodium, along with other electrolytes could be the reason for keto flu which causes symptoms like light-headedness and headaches.

How much more salt did you consume before keto and now?

Before keto I did my best to stay below 2000mg daily. Now, I really don’t worry about it. Sometimes if it’s warm weather, or I’ve been particularly active I’ll take an electrolyte. But I no longer ration my salt. However, my blood pressure is fine. Your mileage my vary depending on your body. Again, consult your doctor.

Did you ever had microhematuria in you urine?

Personally I have not. For those not versed in kidney jargon, Microhematuria is trace amounts of blood in the urine. However, I have had large amounts of blood in my urine. Back around 2013 I fell off my dirtbike and burst some cysts. For, 3-4 days I was peeing blood. Not fun!

Do you have to do vegan keto?

Nope. You do you. However, I highly recommend looking at studies and research on the effects of animal protein on the kidneys. Animal protein is tough on the kidneys. They have to work harder to flush the protein through. So even if you don’t do vegan keto, maybe look at adding some plant-based protein options more often than animal? There is a great website I recommend for plant-based options specific to renal diet and PKD called Re-Nu. Definitely worth investigating. I am a member of their facebook group which is another fantastic resource.

Also have you tried a bhb supplement? 

No. But this is something I am considering in the future. I am waiting on the release of Keto Citra from Santa Barbara Nutrients. While BHB and citrates are generally considered as safe, many companies and fillers which may not be suitable for PKD patients. As such I’m going to support Dr Thomas Weimbs. his research and products.

Can I reduce the risk of kidney failure by doing Yoga/exercise?

That really depends on your kidneys, lifestyle, health, history and disease progression. Too many factors to consider. I will recommend that activity is encouraged and yoga/exercise is a great way to stabilize blood pressure and reduce stress. Just be mindful of the type of exercise. Eg: no contact sports.

My blood pressure is very high around 160/90 so what should I do for living a long life? 

Reduce your blood pressure! Get your diet in check, maybe see a renal dietician for help. Exercise. Try yoga and meditation, or even coloring to reduce your stress. There may be lifestyle changes needed. Plus don’t be afraid to try medication.

Do you have any pain caused by Pkd?

Sometimes. Personally, as I’ve said previously I’ve been proactive about my health. I spend time looking at the research, studies and data. So I gave up red meat early in my life. Reduced my alcohol and caffeine consumption. When I saw data about the liver cysts and oral contraceptives I stopped taking the pill. However, I still had times when my kidneys got pissed off and I’d have a day or two of pain. 2019 was particularly bad with lots of time off sick. Since adopting the keto diet I haven’t had any pain.

Please give me advice about how to manage my PKD

I’m not a doctor. I can’t give advice. My only hope in sharing my journey is that it helps someone think about changing their lifestyle/diet and approaching their nephrologist. Because this is a diet change and not backed by major pharmaceutical companies trying to make big bucks this research will easily get buried. Knowledge is power, but we have to get the information out there!

I’m a diet soda lover and drink coffee and energy drinks do you drink either?

Short answer, no. The long answer is that soda aggravates my kidneys. There are studies done showing the negative effects of caffeine on cystic kidneys. I did my own case study of one, and soda causes me pain. The last time I had soda was at Disneyland and I was in pain from it for two days. Personally I have never had coffee, I don’t even like the smell. In the past I have had the occasional energy drink. Now I know that the caffiene can increase the cyst size/growth it’s not worth the risk IMO. I drink water, and tea (decaf/herbal).

Do you think a vegan keto instead of the regular keto is more beneficial for people who pkd?

Again, thinking about the stressful effect of animal protein on the kidneys it’s MY PERSONAL BELIEF that plant-based is more beneficial for people with PKD. But, reiterating the fact that I am not a doctor and this is my personal belief. It just makes sense to me!

I’m on keto and wanting to switch to vegan keto because I believe animal dairy is causing me issues, help!

On a personal level when I cut out dairy my allergies got better. I was prone to eczema and once I went vegan that cleared up and hasn’t come back. Many people are allergic to dairy. Maybe try cutting it out for a while and see if you improve?

Will protein intake will be helpful or a harmful to me?

Again, not a doctor, not a dietician. Speak to your nephrologist and renal dietician because diet really depends on the stage of kidney disease you are in. Dietary requirements at stage 2 are starkly different to stage 5. That said, most people in the US eat way more protein than necessary. Which gets excreted by… you guessed it, the kidneys. But before you know how much you “should” have, track how much you’re getting now.

How is your Cholesterol?

Good question! Honestly, I haven’t had this checked recently. This is something I want to get done soon as I am curious. I’d also need to search back through my patient records for my last cholesterol test too. Maybe in a future update!

Any tips on vegan keto? Starting the diet in the hope that it will help my polycystic kidney and liver

Check with your medical provider before starting, then do some research and begin trying some recipes now. Then choose a date to go “all-in”. My recommendation is to stay on the diet for 3 months minimum. Have your labs done before and after. Track your meals, and assess your health/pain levels daily.

For liver cysts, be mindful of soy. It can aggravate some liver cysts. Thankfully I do perfectly well with soy. Also, if you’re on the pill find a different method of birth control.

How are you doing it? even with just vegetables I go over 50g carbs!

The first thing to remember is that on the PKD keto diet we need to track NET CARBS. Not total carbs. What are net carbs? Those are the carbs grams minus the grams of fiber. What’s left are the net carbs. Those are the carbs you should be counting.

Also, not all vegetables are made equal. The difference in carbs between potatoes and zucchini is huge. So, definitely be mindful of the type of vegetable you’re choosing. A quick google search of high/low carb veggies should set you straight. Another thing is that I do not prescribe to the 10g of carbs keto diet mythology. Instead, I choose the macros for ketosis.

Personally, I choose to use macros. Why? These are easier to adjust with my activity level. With the cronometer app I can easily track calories, fat, carbs, protein, and activity levels. For me, this is a much easier, and lenient way to do a PKD keto diet.

What do you eat in a day?

Firstly, since September 2019 I’ve been doing intermittent fasting and I haven’t eaten breakfast. My current eating window is 12pm-8pm so lunch and dinner, with occasionally a snack between. Meal-wise I highly recommend the book Vegan Keto by Liz McDonald, and trying out some recipes beforehand.

• Taco’s
• Chia Pudding
• Salads
• Wraps
• Coconut Curry
• Spicy riced cauliflower
• Pizza
• Zoodles
• Palmini Pasta
• Zucchini Layered “Lasagne”
• avocado chocolate pudding
• Coconut “Porridge”
• and more

When I switched to PKD keto diet I spent a month trying new recipes and researching alternatives to my then-current meals. A quick google search and you’ll find recipes for keto-friendly pizza dough, bread, etc. As well as alternatives to things like maple syrup, and sugar. The keto diet is pretty popular now, and plant-based diets are growing too.

PKD keto diet conclusion

Truthfully when I first heard about the PKD keto diet study I was extremely skeptical. I did not really go into this with an open mind, but the results from the study were so striking that I figured it was worth a shot. To say I was surprised at the results is an understatement. I fully expected this to not work. But a GFR increase and creatinine increase were just bonuses from just feeling much better. Yes, the honest truth is that the diet takes time, planning and work. But, as I said in the video, the alternative is dialysis and transplant. Choose your challenge.

What will I be changing in the future? Well, I’ll be trying the BHB/keto-Citra supplement when it’s released. Currently, I’m trying a shorter eater window (12-6pm) and possibly longer fasts in the future. If you have questions, then let me know in the comments. I already have requests for “what I eat in a day” videos, as well as recipes and product reviews.

Questions

• Have you tried the keto diet?
• What high carb foods/meals are your favorites?
• Do you have any questions about the PKD keto diet?