Put briefly, it works.
My diet was:
1. Prescription grade MCT Powder every morning, approximately 140 calories (provided free of charge by the BC government -- Canadian health care is one of the things that makes Canada awesome!).
2. Eating at home: Under 15% of calories from fat. Sounds simple, but it isn't. Let's put it this way: 100 grams of corn has 96 calories and 1.5 grams of fat. At 9 calories per gram, that is 13.5% of calories from fat. The baseline fat in many foods we consider fat-free is actually more than zero.
2(a): Watch out! In the US, if it is less than 0.5 grams of fat, they may simply say "zero". You don't normally see food labels list 0.3 grams of fat.
2(b): Canadian products, including "fat free" dairy products, actually DO list fractional grams of fat. Surprise! Many "fat free" dairy products do have fat in them. Read the label.
2(c): I normally want every single ingredient to have less than 15% of calories from fat. That way I actually eat less than 15% calories from fat -- because I assume that through the course of the day I may make errors and this lets me make a mistake (such as when they give me "skim milk" creamer at a restaurant that is really 2%) without blowing the 15% mark.
3. Eating away from home: This requires a bag of tricks.
3(a) First, nothing on the menu is going to work. Seriously. I can count on one finger (or less) the number of times I was able to just order a menu item without having to have a conversation with the server about fat content.
3(b) Second, pizza. Pizza is a fantastic choice, with a giant caveat: "I'd like to order the Margherita Pizza, but with no cheese. If there is any oil in the pizza sauce, please just put some tomato slices on it instead." Done this way, it is basically bread and vegetables. Some breads have more than 15% of calories from fat, but it isn't going to destroy your diet ratio. Just offset it...
3(c) Third, offset it. Order some rice or a dry baked potato to eat with the meal. This gives you extra carbs and reduces the overall percentage of calories from fat.
3(d) Fourth, your dessert is always fruit. Always. You don't have a choice (except periodically sorbet when it is available).
3(e) Fifth, you don't get to order fancy coffee either unless it is fat free. One regular latte pretty much blows your ratio for the day.
3(f) Sixth, get creative. Tell the server that you have a muscle disorder and you're medically limited to 15% of calories from fat and you'd like to order a piece of grilled chicken on a roll with no mayo, no cheese, nothing else with fat. Then smile and say "I'm not allowed to eat anything fun anymore, so instead of fries can I have a salad with no cheese, no dressing". The self-deprication prevents the server from getting annoyed with you.
4. Learn math tricks.
4(a) 15% is a difficult thing to calculate on the fly, particularly when you're at the supermarket and looking over dozens of nutritional labels in an hour. What is 15% of 145 calories? Yeh, I don't know either. The good news? It doesn't matter -- use the trick in the next paragraph.
4(b) Long chain fats have 9 calories per gram (medium chain fats have 8 calories per gram, but those with CPT2 can metabolize them, so they don't count against the 15%). It turns out that 9/60=15. In other words 1 gram of fat = 9 calories = 9/60. This makes life simple: You can eat anything that has 1 gram of fat per 60 calories or less. If it has more than 1 gram of fat per 60 calories, you don't get to eat it. Quick test: 4 grams of fat in 218 calories -- OK or not OK? Easy answer: 4x60=240. 240<218, so all good, eat away. What about 6 grams of fat in 250 calories? 6 x 60 = 360. 360 calories > 250 calories, so the amount of fat is too high (i.e. 6 grams of fat requires at least 360 calories to be 15% or less).
5. Protein: I was told by a former nutritionist to stay away from protein. That is not the advice my CPT2 specialist gave me. During an active muscle breakdown episode, protein can be risky since metabolizing muscle fibers and protein both happen in the kidneys, putting them at heightened risk of failure. If I'm not having an episode, I no longer limit my protein (except almost all proteins have fat in them, so I do the "no more than 1 gram of fat per 60 calories" trick.
I had my second visit with an Adult Metabolic Disease Clinic nutritionist last week, and learned I was doing things almost right. The "almost" was a trick that I'm not allowed to do anymore. I was adjusting the total number of meal calories by ordering juice or pop (with sugar) with my meal so that it would offset the fat calories. It turns out it is far more complex. Yes, you can offset, but only with complex carbohydrates. So a side order of whole wheat bread is all good, but a Pepsi, as delicious as it is, is not a legitimate way for CPT2 patients to offset calories. You can still have sugar pop drinks, but just don't use them to offset calories.
Importantly, I was told to make the carbs I eat as complex as possible. This is itself complex, because whole foods often have more fat than their simple carb counterparts. For example, brown rice has 1.8 grams of fat per 8 ounces. It is still ok, because it has 216 calories (rounding up, 2 x 60 = 180, so brown rice is just fine). But in terms of a fat-free food offsetting other foods with fats, complex carbs aren't a magic bullet.
Also, now that I've moved to Vancouver, I will say that Kombucha is awesome. My nutritionist was clear that Kombucha is sufficiently complex that it is just fine to drink.
I am one of the very few people to have been diagnosed with a genetic disorder called Carnitine palmitoyltransferase II Deficiency, or "CPT2 Deficiency". In between episodes, life with CPT2 is very normal. However, during an episode CPT2 patients experience muscle pain, rhabdomyolysis, myoglobinuria and other unpleasant symptoms. I will use this blog to periodically describe my experiences with CPT2 in the hopes that others with the disorder will find it useful.
Thursday, July 26, 2018
Tuesday, March 27, 2018
Getting close to asymptomatic
After visiting the Vancouver Metabolic Disease Clinic, I made two big changes in my approach to CPT2:
1. I now have at least 140 calories, and sometimes 280 calories, of pharmaceutical grade MCT powder. The first 140 calories are consumed right after I wake up.
2. I have strictly limited my diet to 15% of calories from (long chain) fat at a maximum.
I've felt CPT2 symptoms hint that they were coming on. One day I forgot to eat breakfast and lunch and by dinner I had some shaking. But it never progressed beyond the worrisome early signs. As far as I can tell (mostly from looking at my urine), I haven't had significant muscle breakdown since I started MCT and lowered my fat intake to under 15%.
Will this work for everyone? Probably not. Is it unlimited protection from CPT2 episodes? Surely not. But it is still the best my muscles have done since I became an adult.
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