Eight Years on the Ketogenic Diet: How a Grown-Up Took the Keto Plunge by Lynne Tagawa The bag of potato chips looked inviting. I had French onion dip to go with it, too. I dove in and munched away. A large bag all to myself! Disappointingly, I was unable to finish it. And, it didn’t taste as good as I had expected. I was preparing to change my life, perhaps for good. My eating life, at least—and this new life would not include potato chips—hence the planned binge. I was planning to go on a low-carb, medically-approved diet for epilepsy: the ketogenic diet first developed at Mayo Clinic. There was a time when my seizures were fairly well controlled by drugs. But that time was past, and my doctor put me in the hospital for special testing; he thought I might be a candidate for surgery. But once the results were in, it turned out that I had juvenile myoclonic epilepsy: a genetic disorder that could not be ameliorated by surgery. My neurologist chose an effective drug for this disorder, but it only decreased my seizures by fifty percent. My hair was falling out and I was gaining a lot of weight, not much fun for anyone, especially a woman. Was there anything else I could do? I began by reading about a “ketogenic” diet for intractable epilepsy. It was observed that short, medically supervised, periods of starvation could reduce seizures, even long-term. By instituting a diet high in fat and low in carbohydrates, a metabolic state could be achieved similar to what occurred during starvation. Originally, this medically-supervised diet had been used mostly for children and was generally instituted in cases where ordinary medication was ineffective. But could it work for me, a forty-year old woman? As a biology teacher, I couldn’t imagine that my body was biochemically so different from that of a fourteenyear-old. And this diet had been successfully used in adolescents. Why then did a prominent medical school 22 Epilepsy: Insights & Strategies August 2009 claim that it did not work for adults? I decided to ignore the big name school and give it a try anyway. My neurologist was unfazed by my suggestion. He didn’t give me a hard time for wanting to do something “different.” I had suspected as much. At one point he had stated, “If hanging upside-down by your boots helps, then do it.” A fellow empiricist! The science teacher in me was thrilled. He did, however, give me a list of warnings, much as he had regularly done when he put me on a new drug. Atherosclerosis was one, presumably because of the high fat content of the diet. I also went to a nutritionist. She wondered about my calcium situation, thinking that high fat would inhibit absorption. I was unsure about that, but I did know that the traditional Inuit (Eskimo) diet which was high in fat did dispose them to osteoporosis. I decided to make sure I took calcium supplements, as well as vitamins and other minerals. So far my bones have done well, according to my most recent DEXA scan. The ketogenic diet should not be attempted without medical consultation and supervision of some sort. Because it has potential side effects, you will need to be monitored by a neurologist and dietician. But, before I began the diet, I had to face some mental and emotional–and even spiritual–issues. I had to think this through. The nature of the diet was such that I couldn’t ever cheat. Ever! Food is so powerful that many things in life revolve around it; family and social events, for example. Then there is the whole realm of “comfort” food. I knew about that pretty well; at times during my life my waistline had suffered as a result. And dieting? Oh well, that had often seemed like a lost cause. I remember being overweight in college and the huge dilemma that posed for me. Only Eight Years on the Ketogenic Diet Tagawa after much prayer–and time–did I attain a normal weight. Could I stay on this diet? Surely, not by wishful thinking alone. And if I could, did I really want my life to be governed by food in this way? The answer to that was found in the nature of my seizures. They were pretty severe tonic-clonic events, and even though Depakote had reduced the frequency of those seizures by half, I still had what I called “close calls”–frightening auras. I suppose that someone else with a less dramatic or frightening problem would have less motivation to stick to such a diet. But I had to face a terrifying reality; my seizures were not only horrible, they were slowly stealing away the ability of my brain to function. Both my memory and my “spatial reasoning” were compromised. So it wasn’t really a “diet” in the sense of a reducing diet meant to make me feel better about myself. It was a necessary medical change. And, just as I took my medication faithfully, so I would have to govern every gram of food that went into my mouth for this to work. So, having done my homework and pondering it all, I began the diet one January day. I remember those first few days as the hardest; my body’s metabolism was shifting gears and I didn’t feel well. But after I got “over the hump,” I felt fine. In fact, if anything, I felt a little better. I never again experienced the tiredness peculiar to the aftermath of excessive sugar intake; my mental state was on an even keel. I did have to do the math. The Johns Hopkins ketogenic program specified a diet that contained a ratio of 4 grams of fat to every gram of protein or carbs. In my research, I found that some people did fine on a less stringent ratio; I decided on the 3: 1 ratio of fat to everything else. That meant that protein was restricted as well as carbohydrates, and I had to weigh everything. That piece of chicken couldn’t be too big. My cookbook, “The Joy of Cooking,” was a help, with its breakdown of common–and not-so-common– ingredients near the back. I could calculate grams of fat, protein, and carbohydrate to my heart’s content. Fat comprised most of my caloric intake. Butter, heavy whipping cream, and olive oil became plentiful in my diet, as well as foods high in fat such as cheese. But no sugar! And even some vegetables had to be restricted; carrots contain a lot of starch, and even spinach, believe it or not, has enough grams of carbohydrates to have to be figured into the calculations. I kept a little notebook to calculate and record grams of fat, protein and carbs. I also had to squeeze the total into the restrictions of my estimated caloric expenditure, which wasn’t much. I knew I didn’t burn over 1800 calories a day, and it was getting hard to include sufficient protein. Even at a 3: 1 ratio of fat to everything else, I had trouble fitting in even 35 grams of protein a day. The World Health Organization had a higher minimum protein allotment than what I was consuming, and for my health’s sake, I worked hard to reduce carbs as much as I could so I could consume more protein. I began to dream about steak. Over the ensuing months and years I gradually included more protein. I discovered that nothing bad happened! What I had to learn experimentally has been confirmed by others, that protein intake does not have to be so restrictive. In any case, I rarely eat huge amounts of meat; my stomach has shrunk a bit and if we go out to eat I don’t order the largest steak. Speaking of steak, it has been nice to have whole classes of yummy foods to choose from. Instead of thinking about what I can’t have, it has helped to think more about what I can have! If you can afford it, lobster with drawn butter is up at the top of my list, along with salad with blue cheese dressing. I can’t have much fruit. But I can have a strawberry. Or a few blueberries; both of these are so good for you! I can even have V-8 juice if I drink an ounce or two at a time. These things may not seem like “treats” but they will once you’re on this diet. Over time, I have developed an “eye” for servings. I don’t weigh anything anymore, though that was certainly useful in the beginning. And my ratio has dropped; I am maintaining seizure control on less than a 3:1 ratio. August 2009 Epilepsy: Insights & Strategies 23 Eight Years on the Ketogenic Diet Tagawa Amazingly, I have no craving for sweets. I just don’t need it, and if I do want a little sweetness, a little goes a long way. It does help to have a repertoire of “treats” for those evenings in front of the TV when everyone else has ice cream. Nuts are a category of useful snacks. Just double check the carbs on the type of nuts you want to eat and adjust the amount accordingly. One “problem” I have had is the fact that most of my diet is nutrient-dense. There often isn’t much chewing involved. Suddenly, I’m done with my meal. I will feel a vague need for “more.” One solution is to fix a simple cup of tea or grab a few nuts. Celery sticks can be useful, too. Another strategy to overcome the dissatisfaction of nutrient density is to fill your main dishes with plenty of low-carb veggies. Cabbage can be a friend here. One dish I make that my kids love is called “egg roll guts.” My recipe includes hamburger, cabbage, and eggroll spices–and some olive oil. They get it served over brown rice; I get it plain. Striving for variety has really helped. At first, I was eating cheddar cheese for breakfast every single morning. That got really old. It can be tempting to fall into food ruts, with food choices restricted. I’ve developed a short list of instant stand-bys. But over time, I tried to make a point of adding new recipes. Omelets are not just for breakfast. They are one of my favorite choices for lunch: two eggs plus cheese plus low-carb veggies. Add a little salsa and you’ve gone southwestern. The possibilities are endless. Curry is another whole category of possibilities: start with a whole stick of butter! Even stir-fry dishes can be included in the diet; it helps to increase the fat content. If I need to thicken a stir-fry or stew with corn starch or flour, I take out my portion first. With all this fat, what about cholesterol? Actually, my blood work is okay even though my biggest source of calories is probably butterfat. My latest “score” was 300 mg/dl for total cholesterol, a rather alarming number, until you realize that my HDL (high-density lipoprotein, sometimes referred to as “good” cholesterol) is 100 mg/dl. My internist is perfectly okay with it. Now all this may sound good so far. But, what about social situations? Actually, there have been very few awkward moments. My friends know about my diet; sometimes I try to make some kind of tactful reminder if we’re 24 Epilepsy: Insights & Strategies August 2009 invited over or if there is some kind of event coming up with food. I just need to know if I need to supply my own foods if it’s a potluck or some such thing. Usually I’m fine. Meat and salad are usually part of the proceedings—and I can always eat cheese! Sometimes when I meet someone who does not know about my diet, and I need to explain it, I compare it to the Atkins diet. Everyone seems to understand that. Actually, the diet is easier to explain than my seizure disorder. Occasionally folks don’t feel totally comfortable about epilepsy in general, but they usually understand special diets. And no, I haven’t lost weight on this diet. You would think that on an Atkins-type diet I would, but instead my weight has stabilized. Remember, the drug I was on caused me to gain weight at a horrendous rate– everything tasted so good! But, the ketogenic diet has tweaked my biochemistry in such a way that I don’t feel like eating everything in sight. I’ll settle for that. There was one other downside to this diet that I did not anticipate. Like medication, it has made me a little tired. I think this is due to a lower body temperature. My internist keeps checking my thyroid and apparently that organ is doing its job. But it seems natural to assume that if my body thinks it’s starving (which is what the keto diet is trying to imitate), it may not run at full throttle. I’ve learned to live with this diet. Mainly because I have not had one tonic-clonic seizure since I have been on it. In fact, I have actually had a couple of bad dreams in which I forgot and did something illegal such as eat a piece of cake. Yikes! Can I make myself throw up? Is it too late? Oh, it was only a dream. Avoiding carbs has become second nature. Just like taking my pills. What about the future? I am not sure. I have thought about decreasing my medication. Not sure I have the guts to do that, at least not yet. But most of all I am thankful that I no longer have uncontrolled seizures. You can find more information on the ketogenic diet at: http://www.epilepsy.com/epilepsy/treatment_ ketogenic_diet Lynne Tagawa is married with four sons who are all now taller than she is. She is a part-time science teacher with a B. Ed. from the University of Hawaii, where she met her terrific husband. She now lives with her family in San Antonio, Texas.