Could Keto Be The Change You Need?

The keto diet is a high fat and low carbohydrate diet. Beware of imitations though – there are several variations. We’re not talking about keto for fitness, usually wrapped up in lycra. Keto for epilepsy is different. It’s not for weight-loss. It’s a medically prescribed and monitored diet used to manage your seizures. It’s always supported by a specialist dietitian, epilepsy doctor and epilepsy nurses. However, in adult epilepsy care within the NHS, the diet isn’t as widely available as a treatment at this time. There are a few clinics you can get support from and Matthew’s Friends clinics will take NHS referrals. You will need to be supported by one of these clinics so that they can medically supervise a ketogenic diet in adult services. You can still wear lycra if you want to though, there’s no judgement here.

Every single body is different and everybody’s epilepsy is different. Keto may work with huge success for some and not work at all for others. Your epilepsy doctor will be able to talk to you about whether it could be an option for you.

Generally, your body breaks carbs (rice, potatoes and pasta) down into glucose to give you the energy you need day-to-day. Without enough glucose your body uses fat as an energy resource instead. By limiting carb intake, the keto diet mimics starvation. It encourages your body and brain to use fat for energy instead of glucose. When this happens, our bodies produce a chemical called ‘ketones’ and are in a state of ‘ketosis’, hence the name of the diet. You could think of ketones like a necklace and the fats as pearls. As your body and brain burn the pearls the necklace dissolves. Which means you can check if you’re in ketosis by checking your wee for the necklace (ketones). Ketones are not what make the diet work though…this is still to be discovered. Research suggests it may be linked to medium chain triglycerides (types of fat) but the jury is still out.

Keto is STRICT. It’s more about a lifestyle change than a diet – if you don’t make the change it simply won’t work. To stop your body using glucose for energy, it will use fat. And this will come from naturally fatty foods like cream and butter and dairy-free alternatives like avocado and coconut. Every ketogenic diet differs depending on YOU and how YOU respond to the diet. Each diet will have a strict ratio of protein to fats to carbs – which is why you’ll need to be supported by a specialist ketogenic team. The diet is completely prescribed – you will need to keep track of what you eat, measure your intake and plan ahead. It can be daunting which is why you get so much support from your epilepsy doctor, dietitian and even psychologists. There are whole charities and YouTube channels dedicated to helping you with recipes and advice, should you feel stuck in a rut or feel like quitting. You usually stay on the diet for two years before weaning off but the toughest part is the first three months.

You shouldn’t put weight on if you follow the diet and exercise plan tailored specifically for you by an expert dietitian.

Keto can have side-effects. These include kidney-stones, diarrhoea, constipation, high cholesterol and weight loss. Which makes regular contact with the team essential. Don’t let this put you off though, you may not experience any side-effects at all.

If you are someone that the diet works for, you have approximately 40% chance of reducing your seizures by at least 50% after 3 months, and 10% chance of becoming permanently seizure-free. If successful, you may be able to come off your antiepileptic drugs and potentially stop the diet after two years.

It can be tough, but there are great support networks out there and some wonderful recipes! So, if it works, it's worth sticking to. Remember if you are struggling, you can always talk to us or your epilepsy doctor.

The first support you need is your willpower. Secondly, it’s those close to you – family, friends, flatmates and colleagues. All the people who eat with you, cook for and with you so they know what you can have and what you need to avoid.

If your epilepsy doctor suggests trying the keto diet, you’ll have their full support – plus that of a specialist team. Together they’ll help you plan meals, find recipes and understand what vitamins and dietary supplements you might need. You’ll need to have regular urine and blood samples taken to measure the level of ketones in your blood or urine, so if you’re not a fan of needles chat to your epilepsy doctor about your options.

The fun comes with researching recipes for yourself and working with your dietitian to find what works best for you. And it doesn’t stop there – you could don your apron and learn some culinary skills of your own with specialist classes run by experienced and highly creative keto chefs. Matthew’s Friends will also provide an invaluable support network and better recipes than you can find in most keto books. Matthew’s Friends is a UK registered charity specialising exclusively in medical ketogenic dietary therapies - join the forum here.

Keto is very strict and can be hard work at times. Falling off the wagon could affect your epilepsy so it’s important you have the support of everyone around you. And if you feel like you’re struggling your epilepsy doctor and dietitian will be there to help.

Share your keto stories with us and your favourite recipes in the thread below.