Ketogenic Diet

[green]

The ketogenic diet is used as a mainstream medical treatment for intractable epilepsy. It involves reducing calorie intake to 70 % of RDA, and eating a 2:1 - 4.5:1 ratio of calories-from-fat to calories-from-protein-and-carbohydrates. No one knows why this helps with epilepsy.

It seems promising as a potential treatment for POTS for a couple reasons: 1) it allows current body weight to be maintained while reducing meal size, and virtually eliminating carbohydrates which seems like it would help with post-prandial fatigue. 2) it is supposed to increase energy levels by altering metabolism (but no one knows exactly how this works)

Has anyone ever tried it?

[EarthMother]

Oh wow! I just wikipedia'd it. My goodness breakfast would be eggs with bacon plus HEAVY WHIPPING CREAM and 2 TBLS of BUTTER with a tiny slice of apple. Oh wait, snack is even better ... spoonfuls of peanut butter mixed with real butter. My cardiologist would lock me up if I brought this to him.

All joking aside, I do think there is some interesting benefits from using real butter and whole milk as well as things like coconut oil. Since my crash last spring, I have re-vamped my entire diet. Eliminated all processed foods (even protein powders and other "healthy" processed products.) I swtiched from healthy margarines to using organic butter and I start every morning with 8 ounces of organic whole milk. Needless to say, I'll be asking my Doctor to check my cholesterol levels this month when I go in for my check up! But I do believe that what we eat can substantially alter our symptoms.

As Hippocrates said,

"Let your food be your medicine, and your medicine be your food"

[flop]

I'm doing a lot of changing of my diet at the moment (under the guidance of a holistic health practitioner). The main thing that we are using is "metabolic typing" which uses the principle that there is no one diet that works for everyone, we each need to eat according to our body's nutritional requirements. I am currently on a high protein, high fat, low carb, no dairy, no grain diet. It does seem to be helping me a lot. Also eating frequent meals and snacks is helping to stabilise my blood sugar levels.

I would be very wary of a ketogenic diet. I know someone who's child has Dravet syndrome (severe epilepsy) and he is being tried on a ketogenic diet but under very close hospital and dietician supervision. Ketones are a toxic/waste product made when the body can't create energy via the normal pathways. (I remember studying aerobic and anaerobic repsiration/metabolism in A level biology at school. Anaerobic metabolism is an inefficient way to release energy from food (hence how the Atkins diet causes weight loss) and creates ketones). It is ketones that cause the ketoacidotic state that kills so many type 1 diabetics.

One of the main things that I have adopted is trying to eat everything as "natural" as possible. Where possible I buy organic or grass-fed meat, organic vegetables and try to cook everything myself so avoiding all processed foods. I was horrified to realise quite how many chemicals are stuffed into supposedly healthy foods, things like protein shakes are some of the worst culprits for being full of junk. I think that natural fats are probably healthier than processed fats such as trans-fats and hydrogenated oils (ie butter better than margarine). Cholesterol levels are interesting as the vast majority of the cholesterol in your blood is actually manufactured by your own body not due to high cholesterol in your diet (that is why going on a low fat diet often only reduces your cholesterol level by 0.5 to 1 point).

There is so much that we don't know enough about. If in doubt stick to the sensible approach of "everything in moderation"!

Flop

[EarthMother]

I was horrified to realise quite how many chemicals are stuffed into supposedly healthy foods, things like protein shakes are some of the worst culprits for being full of junk.

Here! Here! I buy my protein shakes at my local organic natural health food store. Who knew the items in it are loaded with free glutamates (think of MSG reaction). I have led a whole grain, whole food, vegetarian diet for years and still when I looked at the labels of the "natural" foods I was eating I was shocked to see so many had additives that are listed as NO-NOs by way of the MSG reaction folks. When I cleaned up my diet (started baking my own bread again etc.) I also saw a big improvement in my blood sugar levels and a decrease in the daily flares.

I made a fresh cranberry chutney for a holiday meal -- I had planned to use only fresh cranberries with a bag of frozen peaches, cooked and then pureed. But when I looked at the Frozen Peaches they had a bunch of other additives! Who knew? I was lucky that my daughter could pop out and pick up some organic frozen mango. I have to be SO careful with what I am using as ingredients and read and re-read the labels.

[green]

I just noticed that the topic of ketogenic dieting has been broached before on this forum, with one dieter reporting anxiety and hunger.

Flop and Earthmother - the merits of nutritional holism not withstanding, ketogenic dieting is safe if managed properly. As evidence, the inuit people of Greenland subsist on a ketogenic diet and they are renown for their feats of physical endurance. From what I've been able to gather a ketogenic dieter risks hypernatremic dehydration (dehydration due to electrolyte imbalance), constipation and vitamin-deficiencies. These can be prevented with supplemental sodium/potassium, vitamins, and fiber. Cholesterol problems are rare and I suppose they could be minimized by eating plant oils instead of animal fats. (my sources are: Miller, (1998) Iatrogenic Neurology, and Freeman (2006) The Ketogenic Diet).

Dr. Freeman says that the diet is a serious medical intervention that should only be used while under a doctor's supervision.

I think there must be an additional risk to people with dysautonomias - the loss of body volume due to dehydration and carbohydrate depletion would exacerbate orthostatic intolerance. I wonder if this is why the sole previous ketogenic dieter on this forum was struggling so much?

[flop]

Hi green,

there is a difference between eating a high protein / high fat diet (such as the Inuit people) and deliberately inducing a ketotic state. As I said before I am on a high fat & protein diet but I check my urine regularly for ketones (urine testing sticks) as I and I am to contact my practitioner immediately if I get a positive result.

I hope you find a dietary combination that suits you.

Flop

[ramakentesh]

Before I was diagnosed I would eat certain foods and get a reaction which I took as meaning i was 'allergic' or 'intolerant' to that food. But I soon realised i was getting a reaction to pretty much everything and it was actually postprandial hypotension.

thankfully this symptom has gone away after my first and worst boute.

Things that still sometimes bring this on for me:

- oats or porridge

- yellow cheese

- caffiene (oh how I miss my coffee)

- anything with nitrates - particularly hot dogs and pizza with cheap meats

- salmon sometimes for no apparent reason...

- and applying aftershave to my neck brings it on as well...

Pretty much anything that is regarded as a migraine trigger also can be dangerous for me in either coping a nasty migraine or a pots episode.

WHen I was very sick I experimented a bit with my diet - high salt always helped - fatty meats always seemed to help too but i have no idea why.

Two foods that I found to be very helpful are green apples and celery - again i am not sure why, and ofcourse good ole licorice is a godsend!

[firewatcher]

Before I was diagnosed I would eat certain foods and get a reaction which I took as meaning i was 'allergic' or 'intolerant' to that food. But I soon realised i was getting a reaction to pretty much everything and it was actually postprandial hypotension.

thankfully this symptom has gone away after my first and worst boute.

Things that still sometimes bring this on for me:

- oats or porridge

- yellow cheese

- caffiene (oh how I miss my coffee)

- anything with nitrates - particularly hot dogs and pizza with cheap meats

- salmon sometimes for no apparent reason...

- and applying aftershave to my neck brings it on as well...

Pretty much anything that is regarded as a migraine trigger also can be dangerous for me in either coping a nasty migraine or a pots episode.

WHen I was very sick I experimented a bit with my diet - high salt always helped - fatty meats always seemed to help too but i have no idea why.

Two foods that I found to be very helpful are green apples and celery - again i am not sure why, and ofcourse good ole licorice is a godsend!

There is a diet specifically made for migraineurs, avoiding certain foods as a whole and limiting others. I knew several people who tried it with great success, but it is VERY limiting. The interesting thing is that is almost exactly the same diet they "treat" you with for histadelia (too much body histamine.) Your salmon problem is probably too much histamine in "older" fish, it is common misdiagnosis for anaphylactic reactions to seafood. As it sits, the tissues break down, releasing histamine into the meat. I wish they would get this thing figured out. It seems like all, or at least most, of the pieces of the puzzle are there but nobody is looking at it as a whole. Each center concentrates on their own little piece and won't back up to see the pattern (or there are just several puzzles there with similar looking pictures )

[green]

Hi green,

there is a difference between eating a high protein / high fat diet (such as the Inuit people) and deliberately inducing a ketotic state. As I said before I am on a high fat & protein diet but I check my urine regularly for ketones (urine testing sticks) as I and I am to contact my practitioner immediately if I get a positive result.

I hope you find a dietary combination that suits you.

Flop

Flop. What you say is interesting to me. I agree that there is a difference between high protein / high fat diets and the ketogenic diet. I am under the impression that the traditional Inuit were actually in ketosis most of the time, because they obtained many more calories from fat than meat. However, I don't know much about this topic first hand - I read about the Inuit in this article ( http://www.nutritionandmetabolism.com/content/1/1/2 ). Because the article referenced the ketogenic diet and the Inuit, I assumed the Inuit ate a ketogenic diet, but on re-examination the article appears ambiguous as to whether their diet was ketogenic or just very low carbohydrates.

Do you mind me asking why it is that you check for ketones in your urine? I have heard of urine ketone tests for ketoacidosis, but I read that ketoacidosis is the result of a deranged metabolism, while ketosis is a normal metabolic state that results when the body is using fat for fuel. Is it because you want to avoid ketoacidosis, or for some other reason that you check your urine for ketones?

I am getting ready to try this ketogenic diet, barring new revelations about the risks. I am counting on their being a significant difference between high protein / low carb diets and high fat / moderate protein / low carb diets; I tried an high protein/low carb diet last year and I was very irritable much of the time. I am under the impression this was because protein is a very inefficient source of energy relative to both carbohydrates and fat.

[flop]

I'll try to explain my understanding of the biochemistry, I haven't got my old school biology book here so it might not be exactly right!

Normal Metabolism

Energy (ATP) is formed via the Kreb's Cycle (Citric Acid Cycle) (well eventually after the electron chain reaction).

The Kreb's cycle needs Acetyl-CoA and Oxaloacetate to function.

The Acetyl-CoA comes from fat (Fat in the liver undergoes lipolysis to give fatty acids and glycerol, the fatty acids are changed into Acetyl-CoA).

The Oxaloacetate is reused in the Kreb's cycle repeatedly (it is bound to other compounds but at the end of the reaction it is freed to be used again).

The fatty acids from fat can also be used by the body as a direct source of energy, but nerve/brain cells can't used them they use glucose as their energy source.

In starvation / Carbohydrate Deficiency

The brain needs glucose to survive.

If not enough glucose is available from carbohydrate ingestion and the body's store of glycogen has been used up the body activates a self-protection mechanism. Glucose is formed from Oxaloacetate to feed the brain.

As the Oxaloacetate has been used the Kreb's Cycle can no longer happen.

This changes the metabolism of fatty acids. Most of the body can use fatty acids directly as a source of energy but the brain can't. In order to provide energy for the brain fatty acids are broken down into ketone bodies and acetyl groups. When in a state of starvation the brain learns to use ketones as an energy source. Creating energy this way is very inefficient (hence dramatic weight loss on Atkin's diet) (I seem to remember you get 2 ATP from ketones rather than the 34 ATP via Kreb's Cycle). Because the brain only uses ketones when there is very low blood glucose and no glycogen left this means that the liver is under severe stress and muscle destruction occurs. Basically it is a state of chronic starvation.

The brain can be "taught" to use ketones as energy. By day 3 of low blood glucose the brain gets 30% of its energy from ketones. By day 40 this has gone up to 70% of its energy from ketones and the brain is using 40g of glucose rather than its normal 120g of glucose.

Differences

The diet that I am on (70% fat+protein, 30% carbohydrates) was calculated for my metabolic type by my practitioner. My body is still getting its energy via the Kreb's Cycle even though most of that energy comes from the fat and protein part of my diet. If I was producing ketones then it shows that I have got my dietary balance wrong. I check my urine for ketones as this would alert my practitioner that we need to adjust my diet.

The ketogenic diet's main feature is that you only take in 70% of the body's caloric need (other energy must come from breaking down fat / muscle). That is why you loose weight and is the key feature of the Atkin's diet.

The Inuit people have a high fat + high protein diet but they are not in a state of starvation and they do get small amounts of carbohydrate so they are not on a ketogenic diet.

I hope that what I have written makes sense. If not please ask and I'll try to untangle my thoughts.

Flop

[flop]

I read that ketoacidosis is the result of a deranged metabolism, while ketosis is a normal metabolic state that results when the body is using fat for fuel.

Green you are quite correct that ketoacidosis is due to deranged metabolism, the ketones build up and change the pH of the blood. This acidotic state can kill very rapidly.

I personally wouldn't agree that ketosis is normal - if your body uses fat for fuel but in the presence of small amounts of carbohydrate then "normal metabolism" occurs (Kreb's cycle). Ketosis only occurs in the absence of glucose.

My view concurs with that of the vast majority of doctors and scientists. There are a minority who believe that ketosis is not harmful and they are the people who will advocate a ketogenic diet and publish most of the available data.

For some people the ketosis of the Atkin's diet certainly produces dramatic weight loss. However it does place the body under stress and the long-term effect of that stress has not been adequately studied. My practitioner was worried that my dysautonomia shows that my nervous system is already malfunctioning and she is anxious to avoid placing it under any additional stress.

As ever we are all different and what works for me may not work for another (particularly if you follow the metabolic typing theory that we all need different diets based on our own body's metabolism). If you are going to change your diet I would advise that you consult someone with experience who can advise and monitor you.

Flop

[Dizzysillyak]

green,

I researched the ketogenic diet at one point too and ended up trying the Modified Atkins Diet (MAD) for seizures instead. John Hopkins recommends this for adults now.

If you research these diet protocals, you'll see that those on these protocals weren't evaluated for food intolerances. Which could account for why it works for some and not others.

I thought it might help me with my spacey episodes / petite mals since I have a history of myoclonus (jerking). I stopped because my blood glucose level was staying too low and I looked and felt like I was going to faint. I was actually out of town with a family member who was soo scared that I was going to faint that she insisted I eat some fruit. And when that stopped me from feeling faint, I never tried the MAD again.

I'm currently on a Paleo / low carb / low oxalate diet. The Paleo diet is known to fix blood glucose problems which some think are responsible for seizures. I've been on the Paleo diet since last year though and although it helped me pass the GTT (glucose tolerance test), I still feel hypoglycemic if I don't eat every 2 - 3 hours.

FWIW .. it appears that my hypoglycemia is from a chromium deficiency. I tested deficient in this about 6 weeks ago. I've only been supplementing for 6 weeks so I don't know for sure yet. It takes 4 - 6 months to get our levels back up where they belong.

Here's the link for MAD.

http://www.hopkinsmedicine.org/press_relea...8/01_28_08.html

In 2002, Johns Hopkins researchers began testing a modified version of the Atkins diet in children with epilepsy. The modified diet shares the high-fat focus of the ketogenic diet, prompting the body to generate ketones. However, it allows more carbohydrates and protein, doesn?t limit fluids and calories, and has no fasting period. When studies showed that the new diet prevented or curtailed seizures in children, the researchers began testing it for efficacy and ease of use in adults.

Edited to add ...

Here's a link for a current group who're using the MAD for seizures. I don't know if it's mostly parents, but even if it is the info will be the same.

http://health.groups.yahoo.com/group/atkins4seizures/

[flop]

Oops I've just realised that whilst I said I was doing high fat/protein and low carb diet, I completely forgot to say that I am dairy free, gluten free, grain free at the moment for suspected intolerances (under the guidance of my practitioner).

Flop

[jjb]

Hi all. My name is Jen & I am new to this forum.

I was excited to see this topic here.

I have quite a bit of info re keto. Med professionals are now experimenting w/ keto and many other neuro issues beside epilepsy ... brain cancer, autism etc.

I have a hx of EDS & Dys. I have a 4 y/o daughter w/ EDS, hemiplegia from stroke & refractory epilepsy.

She has been on a couple of meds for her seizures but they failed. She is currently on a modified ketogenic diet called the Low Glycemic Index Treatment (LGIT). It was dev by one of the leading keto experts (our epileptologist). LGIT is not as rigid as keto or unhealthy, but can be as effective for some.

One of my daughters biggest dys symptoms is heat intolerance. I believe that her face does not sweat. Her intolerance is quite significant and can cause seizures. Some of her other dys symptoms are GI, pupil, & skin color issues. After being on LGIT, I noticed many of her autonomic symptoms improved quite a bit, that is until this past summer. We had a huge mold issue (inside & out).

My dysautonomia issues are the usual. POTS, ortho hypotension, the usual GI & bladder issues and temp regulation problems.

After seeing many specialists and trying many meds, the one thing that actually works for most of my issues is diet and avoiding certain med types (especially dopamine antagonists).

The diet that works for me is also fairly low glycemic, but I could never tolerate the low carb part of the diet that my daughter is on. It will actually trigger more pots & low bp.

Anyway, I look forward to getting to know you all.

I have zillions of articles on the different diets, Ketogenic, LGIT, MAD (another mod keto diet) and so on.

If anyone is looking for any specific info, I'd be happy to provide links.

[green]

Hello,

Sorry to let this thread die. Flop, thank you for the detailed exegesis of the Krebs cycle. Biochemistry is fascinating, even to someone who barely understands any of it, like me.

I wanted to report on my experience experimenting with a ketogenic diet. I'm on my 16th day now and it hasn't been so great. I may have been wrong about the diet being a treatment option for people with dysautonomia - apparently, it causes dehydration through loss of electrolytes. I think this is why my OI has certainly been much worse, and even though I've been drinking electrolyte supplements and getting my carbohydrate ration from potassium rich foods, I still feel drained of energy.

It has seemed to help my brain fog - my memory seems sharper and I've been able to concentrate longer. This could be a kind of placebo effect though and the loss of physical energy almost outweighs the benefits. I'm probably going to quit / adopt major modifications tomorrow. I wanted to report back on it though.

[flop]

Hi Green,

sorry to hear that you haven't found the right food combo for you yet, it is always interesting to see what works for others.

Have you read about metabolic typing? This website has more information about what I am trying out at the moment (started in September and seem to be doing better so far).

Flop

[green]

An update: I am about 27 days into the diet now and I am feeling much better! My OI seems no worse than it used to be and my memory still seems much improved.

I strongly believe that much of the trouble people have reported with the initial stages of this diet is due to the loss of potassium, salt and the resultant dehydration that occurs when one lacks electrolytes. Being dehydrated and potassium deficient may be particularly hard for someone with a dysautonomia. I have been coping by getting most of my carbohydrate ration from bamboo shoots which have ~250 mg of potassium and 2 g of carbohydrates per cup. (here is a link to a list of some potassium rich foods: http://westernhealth.nl.ca/uploads/healthy...vegetables.pdf). I have also been drinking water, taking electrolyes supplements (but sparingly, because my "nuun" tablets have sorbitol in them, which is a sugar) and pouring salt on my oil soaked meatloaf dinners the way cheese lovers will pour parmesan on their spaghetti.

I am pursuing a more relaxed modified atkins plan - < 20 g of carbs, 1 - 1.5 grams of protein per day, and the rest of my 2,500 - 3,000 daily calories from fat (primarily olive, flaxseed and coconut oil). Those numbers are much much higher than my original calculated needs - regular exercise dramatically increases the amount of carbs and protein one can eat without exiting ketosis. I also lift weights and I think this is really complicating things - I've been advised that I need to break the diet once a week to replenish my muscle glycogen stores so I don't become weak and unable to lift. I have had success taking 36 hour breaks to eat a couple sweet potatos, bannanas, etc. during the weekend, and I suppose I will keep doing some kind of break whenever I do a heavy weight-lifting workout.

So, I am sticking with ketosis, at least 80 % of the time, for now and have recorded my experience thus far here for posterity! Contact me if you read this and have experimented with the diet yourself!

[green]

Whoops. When I wrote that I consume "1 - 1.5 grams of protein per day," I meant to write "1 - 1.5 grams of protein PER KILOGRAM OF BODY WEIGHT" per day.