No diet or lifestyle measures have been shown to prevent cysts developing in people with autosomal dominant polycystic kidney disease (ADPKD). However, a healthy lifestyle may: 

• help to protect your kidney function
• reduce your blood pressure
• lower your risk of heart and blood vessel problems (cardiovascular disease), such as stroke. 

Keeping your blood pressure down is especially important because high blood pressure can damage your kidneys if you have ADPKD.  

Tips for a healthy diet and lifestyle include: 

1. Stay a healthy weight
2. Drink enough fluid to stay hydrated
3. Have a healthy diet that is low in salt
4. Drink alcohol in moderation only
5. Exercise regularly
6. Stop smoking

We explain these below. 

If you have early ADPKD, being a healthy weight can help to reduce the speed at which your kidney disease worsens. For everyone, being a healthy weight can reduce your risk of high blood pressure and cardiovascular problems.

While it can affect your health to be overweight, being underweight can make you unwell too. This is because your body isn’t getting the nutrients it needs.

Your doctor can advise you on the weight that is healthy for you. A common way of checking your weight is to calculate your body mass index (BMI) and compare this to the healthy range. To calculate your BMI, you’ll need to know your height and weight. The NHS website has a simple, online BMI calculator.

A healthy BMI is between about 18.5 and 24.9 kg/m2 for most people. Being over 24.9 kg/m2 usually means you’re overweight, while being less than 18.5 kg/m2 means you’re underweight.

Check with your doctor if:

• your kidneys or liver are larger than normal ­— you may need to take this into account when working out your healthy weight
• you’re of South Asian, Black or minority ethnic origin, as your ideal BMI may be slightly lower than the range given above.

If you want to lose weight, see the NHS website for how to make a weight-loss plan and for advice. Also talk to your doctor about a referral to a dietitian for advice and support. You can also ask for a referral to a dietitian if you’re underweight.

It is not proven that drinking extra fluid can be helpful if you have ADPKD. No studies have shown that drinking extra fluid slows the growth of kidney cysts.

Expert recommendation for people with ADPKD 

Kidney experts recommend that you drink enough so you don’t get thirsty, but don’t drink excessively.

In the UK climate, drinking about 6-8 glasses (about 1.2 litres) of water or other liquids each day should be about right to keep you hydrated. This guidance is for everyone, not just people with ADPKD. If you’ve lost more fluid through sweating or diarrhoea, you may need to drink more.

Be careful not to have a lot of sugary drinks. These can cause tooth decay and have many calories.

There is nothing to suggest that people with ADPKD shouldn’t drink caffeine. Some researchers have a theory that caffeine could affect cyst growth, but this hasn’t been proven. Drinking a low amount of caffeine each day doesn’t affect cardiovascular health. While it seems sensible to avoid lots of caffeine, drinking up to 2 cups of coffee or 4 cups of tea a day is thought to be okay.

How do you know if you’re drinking enough water to stay hydrated? The urine colour chart below will give you an idea.

Checking the colour of your urine

This urine chart is a rough guide only. It doesn't apply to people who have been given specific medical advice about how much fluid to drink. Computer screens and printers can make colours appear different. If you have any concerns about your urine colour, please speak to your doctor.

There is no recommended special diet that people with ADPKD should follow. But, a healthy diet can help control your weight, which helps to reduce your blood pressure and risk of cardiovascular disease.

For a healthy balanced diet:

• eat 5 portions of fruit or vegetables a day
• base your meals on starchy foods, such as potatoes, bread, rice or pasta
• eat some dairy (or dairy alternatives, such as soya drinks)
• have protein, such as beans, pulses, fish, eggs, or meat
• only have small amounts of food high in salt, sugar, and fat, and choose unsaturated fats
• choose unsaturated oils and spreads and eat these in small amounts.
• use fresh ingredients to limit the amount of processed and ready-made food you eat.

You’ll find more advice about healthy eating at the NHS Live Well and the British Nutrition Foundation websites.

Do you have a health condition in addition to ADPKD that requires you to avoid certain foods? Talk to your doctor about how you can best manage the dietary requirements of your different conditions. You can ask them for a referral to a dietitian if you need more advice and support on this.

Salt is made up of sodium and chloride. Pure sodium can also be found in some foods. Keeping salt (and sodium) intake down can be good if you have ADPKD. This is because too much salt can speed up ADPKD progression and increase your blood pressure.

In a study of people with ADPKD, those who ate more salt than recommended had a faster decline in kidney function than those who stuck to recommendations. Those eating more salt also had bigger increases in kidney size over time.

Salt can be used as an ingredient in many foods, including bread, breakfast cereals, bacon, ham, sausages, takeaways and ready meals. It’s sometimes listed in ingredients as sodium.

Expert recommendations for people with ADPKD

If you’re an adult, aim to keep your daily salt intake to no more than 5g, preferably less. This is just under a teaspoon of salt, which is the same amount of sodium as 2g of pure sodium. This includes salt added at the table or during cooking, as well as ‘hidden’ salt in food.

Children under 11 and babies should eat less salt than adults.

The recommended maximum amount of salt that children and babies should eat per day depends on age:

• 1-3 years old — no more than 2g salt a day (0.8g sodium)
• 4-6 years old — no more than 3g salt a day (1.2g sodium)
• 7 and older — no more than 5g salt a day (2g sodium).

Especially, if you eat a lot of processed or ready-made food, keeping your salt intake down takes dedication. Check food labels carefully for the amount of salt (sodium).

Some packages use colour coding

• Red= high salt (more than 1.5g salt per 100g)    
• Amber = medium salt (between 0.3g and 1.5g of salt per 100g)
• Green = low salt (0.3g salt or less per 100g)

Some manufacturers show salt content by portion size, while others show it per 100g or 100ml. Either way, remember to take into account how much of the food you’re eating when calculating your salt intake.

If the label shows the amount of sodium, you’ll need to multiply this figure by 2.5 to find out how much salt the food contains.

In "low salt" or "low sodium" products, manufacturers may have replaced some of the sodium with potassium. This can be a problem for a very small number of people with ADPKD. Ask your kidney specialist whether you need to limit the potassium in your diet. Don’t avoid potassium unless they tell you to, because your body may miss out on some of the nutrients it needs. 

If you’re interested in campaigning for less salty foods at your local restaurants or shops, see the Action on Salt website.

Eat a moderate amount of protein

Protein provides energy. It’s needed for growth and to maintain good health. Foods rich in protein include meat, fish, eggs, dairy, soya products, nuts and pulses.

A recent study of people with ADPKD found no link between the amount of protein they ate and kidney function or size. There is little proof to suggest otherwise.

The amount of protein you need depends on your age and body size. Eating very little protein might stop your body getting all the nutrition it need. However, eating very high amounts of protein might not be good for your kidneys. This has been shown in the general population but not in people with ADPKD.

Expert recommendations for people with ADPKD

Adults with ADPKD without severely decreased kidney function should eat a moderate amount of protein. This is about 0.8-1.0 g of protein for each kg of your body weight each day. For example, if you weigh 65kg you should eat about 52-65g of protein each day.

Ask your doctor for advice if your kidney function is severely decreased. This would be chronic kidney disease stage 4 or 5 or an estimated glomerular filtration rate (eGFR) below 30 ml/min/1.73 m².

Table: Protein content of common foods

Highly processed foods (sometimes called ‘ultraprocessed’ foods) might increase risks of kidney disease. This has been shown in the general population, but not in people with ADPKD.

Highly processed foods tend to contain a lot of salt, sugar and additives. Examples are some sausages and ham, ice cream, crisps, pizza, breakfast cereals, carbonated drinks, and biscuits.

Instead, make meals from fresh ingredients when you can. A way to do this is to eat a plant-based diet.

If you follow a plant-based diet, you’ll eat mainly vegetables, fruits, nuts, seeds, wholegrains, beans, pulses and lentils. You’ll have few or no animal products (meat, milk, cheese or eggs). Kidney Care UK has information on plant-based diets for people with chronic kidney disease.

There’s no proof that restricting the number of calories you eat, restricting when you eat, or following a low-carbohydrate diet can slow ADPKD progression. Some of these eating plans are called ‘keto diets’ or ‘ketogenic diets’.

The evidence so far on keto diets is mainly from studies of mice and rats. A large well-controlled trial has not been done in humans yet, but some trials are underway.

We will update our blog on keto diets as results come out.

 The PKD Charity’s view

We do not recommend a keto diet for people with ADPKD. This is because we can’t be sure there are any benefits or that these would outweigh the risks.

We recommend you speak to your kidney specialist, doctor, or a dietitian specializing in kidney disease before trialling any diets that differ to a normal healthy diet.

The best way to select healthy foods is to choose fresh food. This has little processing or additives.

Modern lifestyles mean many of us eat some processed food, even if it’s only a small amount. Some products are surprisingly high in salt, added sugar, saturated fats and calories. Apps are available to help you select healthy food. Also, many products have the traffic light system on them.

With the free NHS Food Scanner app you can scan barcodes on foods, to see what’s in the product and get suggestions for simple, healthier switches. 

Many food packages — especially supermarket brands — now have a colour-coded summary on the front. This helps you to tell whether the food is high in fat, saturated fat, sugar and salt:

• red = high
• amber = medium
• green = low.

The more green on your food labels, the better!

Your liver is the main organ that breaks down alcohol in your body. Unless you prefer to do so, there’s no need to avoid alcohol completely if you have ADPKD and are otherwise healthy. But alcohol does increase people’s risk of accidents and diseases including cancer, stroke, heart disease and liver disease.

Expert recommendations for all people

For lower risk drinking:

• Drink no more than 14 units a week regularly (whether you’re a man or a woman).
• Don’t drink any alcohol on 2—3 days of the week.
• Spread your drinking out over the week, rather than drinking a lot of alcohol in one session.

Drink Aware website has lots of information on reducing your alcohol intake. It also explains the amount of alcohol in common drinks and the effects of alcohol.

Regular exercise is an important part of a healthy lifestyle because it helps to control your weight and blood pressure. Reducing your blood pressure means you’re less likely to have cardiovascular disease. Healthy blood pressure can also help to protect your kidneys from damage.

There are no special guidelines for people with ADPKD on the minimum amount of exercise to do.

Expert recommendations for all people

• If you’re 19–64 years old aim for 2.5 hours of moderate or vigorous physical activity a week
• Children and young people (5–18 year olds) should aim for at least 60 minutes of moderate to vigorous physical activity every day
• Whatever your age, try not to spend long periods of time sitting or lying down

Moderate physical activity is enough to get you slightly out of breath, raise your heart rate, and make you warmer. You can split your exercise into sessions of 10 minutes or more throughout the week. So for example, you could do 5 exercise sessions of 30 minutes on 5 days of the week.

Suggestions include:

• Brisk walking
• Swimming
• Dancing
• Cycling
• Vigorous gardening and housework

Simple changes can add up. Choosing to walk or cycle part of the way to work or choosing the stairs instead of the lift could help you to keep fit.

If you have enlarged kidneys, there’s a risk you could damage a kidney by taking part in riskier sports (for example horse riding) or contact sport (for example rugby, hockey, or martial arts). If you do damage your kidneys playing sport, it could cause a burst cyst, bleeding and pain.

It’s your choice which sports you do, but consider your doctor’s advice, especially if your kidneys are very large.

People with ADPKD can be at higher risk of having an aneurysm (a ballooning of a blood vessel). If you have an aneurysm and are unsure whether this affects the physical activity you can do, ask your doctor for advice.

For ideas of activities and tips on how to stay active, see the NHS website.

Smoking is bad for anyone, but it’s especially important to avoid smoking if you have any type of kidney disease. Smoking can increase the speed at which your ADPKD progresses and lead to kidney damage. Smoking is also a known cause of cardiovascular disease.

It’s never too late to stop smoking, but it can be difficult if you have been smoking for many years. You can find ways to quit at Smokefree. Or ask your doctor to refer you for free, expert support from your local NHS Stop Smoking Service.

• Kidney Kitchen, by Kidney Care UK
• British Nutrition Foundation
• NHS Live Well Hub
• Action on Salt
• British Heart Foundation
• NHS BMI calculator
• Drink Aware: alcohol guidelines
• NHS Smokefree