Ketosis in a Nutshell – Part 3, Happy Campers Galore

the best part of whipped cream

the best part of whipped cream (Photo credit: thepinkpeppercorn)

Many people find that they are pleased (joyful even) to have the option of making use of nutritional ketosis to help them improve their health.

(terminology list at bottom of Part 1)

The numbers of those people are growing steadily as barriers to use of ketogenic diets fall:

  • in the neurological community, the diets have gone from being perceived as too onerous to use in all but rare cases – – to – – progressively becoming more practical and more palatable
  • in the weight loss community, use of nutritional ketosis has gone from often being perceived as an overly strict diet that a person will often “blow” and not use long term – – to – – being much better understood and developed into an eating style that many have adopted over many years with sustained health benefits
  • in both communities, people have gone from a situation with lack of support at the community and peer level – – to – – LOTS of peer support is now available online and in other forms
  • the day-to-day experience of the foods and the meals is much enhanced by the many recipe sources and “foodie” sites online
  • people are able to share their positive experiences with nutritional ketosis and network this information online
  • people are able to share their negative experiences with nutritional ketosis online and get trouble-shooting support
  • continued experience and research has shown that, while there is potential for side effects and there are certain cautions to keep in mind, with proper instruction in a nutritionally sound eating pattern and a reasonable degree of medical support, over-all nutritional ketosis can be used safely over time (with more intensive supervision needed for the stricter versions of the diet, for younger children, for people with more medical problems and medications – particularly during the transition phase)
  • particularly, one of the most important barriers has been concern over the safety of the very high fat intake that is an absolute requirement for long term use of nutritional ketosis.  Reams and reams and web page after web page have been written on this topic and I am not going to attempt a review of it here.  Research done on people following a ketogenic or very low carbohydrate diet in a clinical or research setting (and thus having received some instruction, support and lab monitoring) have not born out these concerns – although monitoring is important to spot the relatively small number of people who do not do well on such a diet.  Also, considerable doubt has been thrown on the concept that there exists any scientific evidence of harm from a high fat diet – at least in the absence of high glucose or a moderate or high carbohydrate intake (other than in those with specific genetic susceptibility).  The research has not separated out the impact of high fat from the impacts of glucose loads.

The availability of home blood ketone test meters and better understanding of their use is likely to substantially speed up the expansion in the use of nutritional ketosis (ketogenic diets) as it will likely help people achieve benefits more reliably and with less confusion and effort.

The Nutritional Ketosis “Nation” Comes from Two Founding Peoples:

(1) Ketosis for control of epilepsy in children

(2) Ketosis for weight loss

Nutritional Ketosis (ketogenic diet) for Epilepsy Control

  • for wonderful stories and pictures of people who have had dramatic recovery of their health from using a ketogenic diet for epilepsy control see HERE. This is a page of personal stories on the website of The Charlie Foundation.  Most of the stories are of kids, but some are reports by adults of their recovery with the diet when they were children.
  • more happy stories on the website of the U.K. organization Mathew’s Friends.  On their home page, click on About Us and then on Our Stories.

Short version

Although remarkably effective for many patients, the ketogenic diet for epilepsy control fell into obscurity as more and more medications, as well as surgical options, came into use.  It was remembered the way it was in the early decades of use  – suitable for a very small number of people, requiring a specialised team and hospitalization to undertake, being very challenging and unpleasant, and presenting medical side-effects and potential nutritional compromise, such as growth restriction.  Time has brought much progress, though.  Now, not only is the “classic” version of the diet much easier and more pleasant than it was in the 1920’s and 1930’s when it was first in use, but also there are less stringent versions of the diet as an option.  In the past two decades, it is the pleased parents of the recovered kids who have pushed the medical community to play catch-up in recognizing this critical medical intervention.  Clinical use continues to rapidly expand around the world and researchers are expanding the horizons of the potential uses of ketogenic diets in medical care.

Longer version

It was in the 1920’s that the “classic” form of the ketogenic diet was developed and first used for epilepsy. They knew that sometimes people with epilepsy would improve during periods of fasting or starvation.  Trouble is, they didn’t know what it was about starvation that caused this improvement – or if it was due to a combination of factors.  They knew that the level of ketones went up during starvation and they knew that there also tended to be dehydration.  Also, in starvation there were not the nutrients to allow for growth.

The diet plans were being developed to try to help with children who were in very serious and difficult medical circumstances.  These children had severe epilepsy that was not responding to other medical treatments.  For this reason, the most effective diet plan possible was the goal. The “classic” ketogenic diet involved all three of these factors combined together.*

  • The diets were designed for the highest promotion of ketone levels in the blood – meaning the least protein compatible with health, tiny amounts of carbohydrates, and the rest as fat – all measured exactly.  They were trying to mimic starvation as closely as possible.
  • There was a limit placed on fluid intake – both the total amount per day and the amount at one time.
  • In addition, the diets were designed with precision to give the children substantially fewer calories per day than the standard calculations said they needed – in fact, only 75% of their calculated needs. The plan was that a child would not lose or gain a pound (despite the fact that normally children grow).  The children were weighed often (e.g. monthly). If the child lost or gained any weight, the food allotment would be adjusted up or down to correct for this.

These diets were dramatically beneficial for many of the children.  Still, some did not benefit and some had partial improvement.  The most remarkable finding was that some children, if they had excellent seizure control, could return to a full normal diet after a couple of years without the seizures coming back.. They were effectively cured of their epilepsy.  Given that the stakes were so high, the degree of response was frustratingly unpredictable.   It could also be erratic – sometimes a child who had been doing well would have a brief recurrence of seizures for no identifiable reason. Sometimes the seizures returned and no adjustment in diet could be found that resulted in regaining seizure control.  The seriousness of the situation, the great hope for improving the lives of these children, the unpredictable and sometimes erratic nature of the response and the lack of helpful insights from research or lab tests all combined together to make it difficult to stray from the “tried and true” version of the diet plans.  The diet plans required intensive highly expert supervision and were extraordinarily stringent, difficult and nutritionally tenuous.

It isn’t hard to understand why the use of the ketogenic diet for epilepsy control fell into obscurity as more and more prescription medications for seizure control were developed – along with more surgical options.  It languished for decades.  Where it did remain in use, by a dedicated team at John Hopkins, the passing decades brought substantial improvements in the practical application of the diet. A big reason for the diet becoming easier and more pleasant to use was the fact that tables of the detailed nutrient content of all common foods became available, which was not the case in the 1920’s.  This, along with home use of highly accurate food scales, enabled the design of diets composed of a greater variety of normal household foods.  Still, the implications of these developments went un-noticed by the greater medical community.

It was the parents who changed all that.  The hospital team kept the knowledge alive and developed it to a more usable form.  It was the parents who insisted (INSISTED) on spreading the word about the life-altering potential of the ketogenic diet.  Why the enthusiasm for a dietary treatment that still, despite the improvements, was still difficult and a serious medical intervention?  Many children continue to suffer from severe epilepsy despite being tried on any number of medications, medications in combination and despite the availability of improvements in surgical options.

In the early 1990s, the desperation of the situation these children and families faced led to a resurgence of interest in the ketogenic diet.  With The Charlie Foundation and Mathew’s Friends anchoring the voices from the parents’ and patients’ side, the medical community has scrambled to keep up as demand for and use of the ketogenic diet has rapidly expanded, now world-wide. (It only sounds like hyperbole because it is such a good story.)

Recently, doctors were very surprised to serendipitously find that a much less strict version of a ketogenic diet (rather than the “classic Ketogenic Diet”) could be very effective for some people for epilepsy control.  This finding led to the development of a specific dietary program called the “Modified Atkins Diet”.  It is very much like the classic Atkins Diet, but with some tweaking to make it more steady in its effects.

Another more liberal version of the diet was developed in 2002 based on the Glycemic Index. This is a diet that keeps total carbohydrates low (not as low as the above two versions), but also focuses on the quality of the carbohydrate foods chosen. It incorporates carbohydrate foods that are slow to digest – meaning that the glucose from the food is absorbed from the digestive tract slowly.  Refined sugars and high GI starches are avoided.

Other diet variations are the MCT Ketogenic Diet, which incorporates MCT oil, and the Modified Ketogenic Diet.

There is one confusing aspect to the terminology about the diets.  The use of ketogenic diets for epilepsy has evolved, until recently, as its own little insular world.  There were no other deliberate medical uses of ketosis in the early decades.  Neurologists got used to using the term “Ketogenic Diet” to describe the very specific highly regularized diet program they were using (including fluid restriction, 75% calories with normal weight children, three meals of identical nutrient balance, etc).  Why not?  No one else was using the term.  Now this causes some confusion as, of course, this is just one possible version of “a” ketogenic diet (a sustainable eating pattern that causes the development of ketosis).  It is helpful to refer to this as the “classic Ketogenic Diet” or “Classic Ketogenic Diet”.  Unfortunately, those in the epilepsy diet community are so used to using these terms (and so often are speaking to each other and implicitly know what each other means) that often the term “classic” is left off.  This can cause some confusion. Also there seems to have been some lack of understanding as it seems that at least some in the neurological community did not understand that the Atkins Diet was intentionally designed to promote the development of ketosis in the early stages – to take advantage of the known appetite suppressing effects of ketosis (ref – Atkins 1973 book, see next installment of this series).

The more acceptable the diets become, the more reason researchers have to delve into the science of what is going on in the body in response to the diets and what other medical conditions might benefit from the use of ketogenic diets.  We still don’t know exactly how these diets cause their beneficial effects.  It is clear that not everybody needs the same combination of diet mechanisms to achieve similar levels of benefit – that is, some people need stricter, more ketotic diets and others do as well with less strict diets. (For more details on the research, see some of the medical papers listed (with links) at the bottom of Part 2 of this series.)

To reflect the new understandings, a term now being used is “Metabolic Therapy”, which incorporates the idea that there are a number of ways to manipulate metabolism that may be harnessed for treatment of neurological conditions.

To see videos of a one day conference in Toronto, March 2010, about dietary treatment of epilepsy, including the various diet options and the treatment of adolescents and adults, please visit my web page HERE

Nutritional Ketosis for Weight Control   ….. to be continued next installment

* some of the core Ketogenic Diet principles detailed in the 1996 book “The Epilepsy Diet Treatment: An Introduction to The Ketogenic Diet, 2nd edition” by John M. Freeman, M.D., Millicent T. Kelly, R.D., L.D. and Jennifer B. Freeman of the John Hopkins Pediatric Epilepsy Center.

Other Resources:

The Charlie Foundation – an American organization that has played a central role in the resurgence over the past 2 decades in the use of the ketogenic diet for epilepsy control.  The web site offers extensive information.

“The Charlie Foundation was established in 1994 in order to raise awareness about the ketogenic diet as a treatment for childhood epilepsy. The modern success of the diet has led to new demands on the medical community. In order to meet these demands, the Charlie Foundation has expanded its priorities to include educational programs for dietitians and neurologists as well as support for clinicians and researchers working to perfect its administration and discover its mechanisms.”

Mathew’s Friends  – an organization in the U.K. that similarly plays a central role in providing information and supporting access to treatment.  Extensive information is available on their website.

Books oriented to the dietary control of epilepsy:

The Keto Cookbook: Innovative Delicious Meals for Staying on the Ketogenic Diet

Ketogenic Diets: Treatments for Epilepsy and Other Disorders

Dietary Treatment of Epilepsy: Practical Implementation of Ketogenic Therapy

Fighting Back with Fat: A Parent’s Guide to Battling Epilepsy Through the Ketogenic Diet and Modified Atkins Diet