Keto College with Matthew’s Friends

In June 2016, I attended the first ever “Keto College” organised by a wonderful charity in the UK, “Matthew’s Friends“, with whom I have been in touch for a good while. Matthew’s Friends are a UK registered charity set up in 2004 by the fabulous Emma Williams and specialise exclusively in medical Ketogenic Diet Therapies. While Matthew’s Friends mainly provide services for epileptic patients, they also offer consultations to patients with Glut1 deficiency and, very recently, also in oncology, i.e. some types of brain tumours.

Topics covered in Keto College

The 2 days promised to be information and science-packed but also very practical- here’s an overview of the topics that were covered:

• Introduction and overview (Prof Helen Cross)
• Preparing for ketogenic therapy and choice of diet (Emma Williams and Liz Neal, RD)
• Classical diet workshop for dieticians
• Neuro-metabolic disease/ GLUT1 DS& PDH (Prof Joerg Klepper and Dr Archana Desurkar)
• Placing dietary therapy alongside other treatment choices for epilepsy (Prof Helen Cross)
• Basic science and mechanisms of action (Dr Lyvia Dabydeen)
• Monitoring and side effects (Prof Anita Devlin)
• Ketogenic therapy for adults (Sue Wood, RD)
• Ketogenic tharapy in oncology (Prof Matt Williams and Sue Wood, RD)
• Medications and over-the-counter products (Helen Grossi, RD)
• Management of emrgency situations (Dr Lyvia Dabydeen)
• MCT diet workshop
• Supplementation (Linda Air, RD)
• Enteral feeding and PN KD (Helena Champion, RD)
• Fine tuning and weaning (Helen Grossi, RD)
• Ketogenic therapy in infants (Helena Champion, RD)
• Modified diets workshop (MAD, MKD and LGIT)
• Ketogenic cooking (Maureen Benn and Neil Palliser-Bosomworth)
• Case studies

The majority of attendees were dieticians from across Europe, including Italy and Holland. I also had the pleasure of meeting and hanging out with Dr Angharad Powell, a GP based in Wales, and my nutritional therapy buddy Alessandro Ferretti.

The great thing was that in the hall outside the lecture room, there were many really interesting exhibitors showing off their innovative products. I particularly liked Hannah’s and Ruth’s stall with their yummy products from The Natural Low Carb Kitchen. They produce 100% natural snacks, treats and meals that are low carb and keto friendly- and even deliver them. What I particularly like about their products is that they’re free of sweeteners and other additives. Some of their products, like the dark chocolate coated Brazil nuts, contain some small amounts of sugar, so if you do follow a very strict ketogenic diet, make sure you read the ingredient list first (as always ;)).

Matthew’s Friends also had a great stall with lots of gadgets and useful tools to have when following a ketogenic diet, especially for children:

My main Take Aways

Ratios

As a nutritional therapist working with cancer patients, the application of a ketogenic diet for epileptic patients is a pretty new world. I remember researching all the different types of ketogenic diets and also the ratios that are calculated for epileptic patients  (e.g. 4:1) when I initially started myself. The Charlie Foundation provide a handy overview of the different types here and I might write more in-depth about this. Although I knew about the idea behind these ratios, I never fully understood how to calculate them because I tend to rely on % of macros- and I’ve definitely learned this now!

In epileptic patients, calculations have to be very exact to make sure seizures are under control. A few (or even less!) grams of carbohydrates or not getting the protein intake right could mean that the patient suffers a seizure, which is why weighing most foods all the time is very important. When I work with cancer patients, I usually take a slightly different approach: Weighing food is very important initially, but once the patient has a good handle on portions (unless new foods are introduced, of course), I consider it sufficient to monitor blood glucose and ketones to make sure they’re on track. When there are no seizures involved, weighing food all the time might not necessarily be required as long as glucose and ketones “behave” and all other markers are on track!

GLUT1 Deficiency

I also learned a lot more about GLUT1 deficiency, which is a condition I was only vaguely familiar with. It is a genetic disorder caused by a mutation in the SLC2A1 gene that impairs brain metabolism and it is commonly diagnosed with a lumbar puncture. The SLC2A1 gene regulates the glucose transporter type 1 (Glut1), which is the main transporter of glucose across the blood-brain barrier. This obviously causes a host of symptoms, which may vary among individuals. Here is a graphic depicting the most common ones:

 

There is no cure for Glut1 deficiency and the current standard of care is the ketogenic diet, which gives the brain an alternative fuel source (mostly fat instead of glucose) and helps improve symptoms for most patients. Just recently, in June 2016, a paper was published that demonstrated that the MAD (modified Atkins diet) could provide similar effectiveness for Glut1 patients, which is great news because this is a less restrictive and generally more palatable form of a ketogenic diet.

Monitoring, fine tuning and weaning for children

Other things I learned was how dieticians monitor and fine tune the diet as a child grows and his/her requirements change, which again is (obviously) done differently with adults who have cancer.  I constantly fine tune my clients’ protocols as well- provided they’re working long term with me- but this is mostly dependent on treatment and side effects, changes in the environment but also weight loss or gain.

What I wasn’t really aware is that most children are weaned off the ketogenic diet fairly soon. They tend not to stay on the diet for more than 2 years after implementation , depending on the child, of course. The decision to wean off the diet is obviously a very difficult one and should be done fairly slowly, over a few weeks: Some parents are very reluctant and scared to wean after the child has done so well. And I was wondering during the course that when a child is generally thriving on the ketogenic diet, why not to leave them at least on a moderate low carb diet instead of putting them back onto a “normal” diet… My assumption is that the more evidence there is coming out that a well-designed low carb approach can be beneficial for many people- and also children- the more this will be implemented.

But there are also cases when there is no improvement in seizure activity after a trial period, where ketosis cannot be achieved adequately, difficulties with compliance are not uncommon either and some parents also have concerns when there are side effects on the diet. This is when weaning is appropriate and necessary, too, of course.

Keto Oncology

The list of interesting topics goes on: management of emergency situations (illness, status epilepticus, ICU), enteral feeding and parenteral ketogenic diet (which I’m sometimes asked about by cancer patients as well) and ketogenics for infants.

But there was also a session on keto oncology, one of the latest addition of services in Matthew’s Friends. Prof Matthew Williams presented his views on the use of a ketogenic diet with cancer patients. He made it very clear from the beginning of his presentation that he is “interested in the ketogenic diet” but that this doesn’t mean that he believes it works in (all) cancers. In his opinion, the main “advantage” is that we already have a track record of safety for the ketogenic diet, thanks to RCTs (randomised controlled trials) conducted in the field of epilepsy and the ketogenic diet. So, phase 1 (safety) is done and what needs to be happening now is more phase 2 and 3 trials in humans. Matt revealed that they are planning a translational, non-randomised phase 2 trial on keto in conjunction with chemo-RT.

Matt Williams also explained that currently, the gold standard treatment for glioblastoma (WHO Grade IV glioma), one of the most aggressive forms of cancer, is surgery, chemo-RT and chemotherapy. His problem: “It doesn’t work”. Median survival for GBM is 15 months, 2-year survival 25% and 5-year survival 6%. Not very promising figures indeed. His interest in the ketogenic diet is mainly based on the fact that deranged glucose metabolism in GBM patients is bad (NB: according to my own research, not only in GBM patients!) and that the ketogenic diet has shown to reduce inflammation.

He reminded us that human trials are urgently needed (because “Many things work in mice, but fail in humans”) and that the ketogenic diet is an attractive research idea because:

• We have a treatment that is safe in humans
• That works in mice
• Where we have some mechanistic ideas

After the session, my feelings were mixed: On the one hand, I took my hat off to Matt for stepping forward and acknowledging that he IS indeed interested in the ketogenic diet. I know from experience- from both talking to my own consultant and also to other oncologists- that making this statement is brave and that many of his colleagues prefer sitting on the fence until everything is “set in stone” and the trials are out- without exposing themselves too much. On the other hand, there were a few key aspects that weren’t discussed at all and that left me with a few questions- after some reflection.

• If the gold standard treatment for GBM clearly doesn’t work, why still put patients through it? I guess everyone is aware how gruelling this treatment combo is and how much it takes it out of patients- on every level.
• What about quality of life? Matt mentioned that he’d had two GBM patients on the ketogenic diet who both died. BUT we didn’t get any more information with regards to when they died (more or less than 15 months?), what they’re quality of life was like and what type of ketogenic diet they followed.
• If we know the ketogenic diet is safe when implemented and monitored correctly, what do people have to lose? And I say this completely from a (admittedly slightly emotional) standpoint of a cancer patient whose life might look very different now if I hadn’t come across the ketogenic diet 4 years ago. It’s simply food for thought, no provocation intended!

To finish this article, I encourage you to watch this interview with the lovely Katie Sheen, founder of the Astro Brain Tumour Fund, who I had the pleasure to talk with at length. Don’t forget to check out the website she talks about and to try it out!

 

Domini, my co-author of “The Ketogenic Kitchen” and I, would like to take the opportunity to thank Emma and Sue for their continued support and encouragement in the past few weeks during our (slightly stressful) book launch. It was just lovely to see our book pop up on a few slides throughout the course and we sincerely hope that our recipes will help many of your patients implement a ketogenic diet!