Weight gain is an issue for many people with CPT II deficiency. That's partly because the frequent feedings recommended for the disorder plus the exercise limitations tend to encourage weight gain. But it is also because dieting for people with CPT II deficiency can be downright risky. In some cases, calorie restriction has resulted in serious episodes of muscle breakdown known as rhabdomyolysis.  

Given these difficulties, we were delighted to hear of two people with CPT II deficiency who have been successful in losing weight. How did they do it? Very carefully. 

Here are one man's original comments as published in the Fall 99 issue of The Spiral Notebook, and his detailed update. 


Fall 1999
"With CPT deficiency there’s a tendency to eat out of fear because you’re not always hungry. That feeds into overeating and gaining weight. I’m always floating an extra 20 or 30 pounds strictly because I have to deal with CPT. I eat, not out of desire, but out of necessity to give my body something to work with. If I didn’t have CPT, there would be days when I would go 8 hours without eating.

"I used to do a protein diet a lot to lose weight. The first two or three days my muscles would react severely, but after that they’d be fine. I never knew what that was about, but it was awful, almost like drug withdrawal. Now that I know what I have, I would never do that again.”


Update Summer 2000
"I have been wrestling with the weight issue for a long, long time. This past year something has clicked for me and I do not know if it is totally my own doing. Maybe it is being positive? It may also be the development of what I call a "Plan B." So many of my attempts to diet have been foiled by a ravenous food intake after a muscle cramping incident or by eating out of fear. So I found it necessary to always have a Plan B. What this means is that I have my normal circle of foods that are available in optimal situations like at home. I then have a circle of foods that are a back-up plan. I keep these with me and I know they will not derail me mentally off my diet.

"Losing weight is such a mental game. As long as you think you are in control, you can succeed. Having Plan B allows me to deviate but not derail! Plan B is also a mobile type of thing that I always carry with me. I have to do that because if I am cutting back on calories I am also exposing myself to CPT episodes. I keep Plan B in the car or in my backpack, or when I am away from home in Hotel rooms, etc.

"For me, Plan B consists of a small bottle of corn starch and a specific power bar called a Steel Bar. I do not claim that this is the ultimate choice in nutrition or in content, but it works for me. Even though it is sweet and has substantial calories I see it not as a luxury, but as a necessity. It has 53 grams of carbohydrates. Yes, it has 330 calories, but it will see me through for several hours if I drink some water with it.  Again, this might not be right for everyone and there are plenty of things on the market. It is the attitude that has worked for me. Sometimes I allow myself a can of sugared soda if it is an emergency. Although I have found that a can of soda doesn't have enough legs to take me very far. Sometimes I carry fruit as well. Raisins are good and easy to carry. I always carry something so that I will not end up in trouble physically or mentally.

"With this method I have lost 51 pounds since June of last year. I have lost weight before but not this much and not this way. In the past it has always been more risky, as I was trying more conventional diets which do not take into account the dynamic of having CPT deficiency. I also ultimately failed with those approaches, as I put the weight back on! In the past my dieting also increased the likelihood of CPT attacks because I was often depriving my muscles of what they needed, or more importantly, wasn't giving them what they needed when they needed it.

"When I started this diet a year ago I started to exercise more. I tried to gradually increase the walking and sometimes early on it was two steps forward one step back. At first my muscle performance wasn't that great and was a bit unpredictable. I tried to throw in some little challenges along the way so that I could have some victories to make me feel good. I played tennis, ping pong, rode bikes, walked, anything to move as often as possible. About five months in to the exercise/diet I had my first major victory by climbing a local mountain called Squaw Peak. It took an hour and a half to get up and I was really worried about having enough to get back down. I took the right food, a telephone, and had company with me. I made it and it felt tremendous! 

"It has now been a year and I am exercising very aggressively. I burned 640 calories in 45 minutes on an elliptical machine called an EFX recently (set on maximum resistance!). I try to be active in some way every day. I am certain that the stronger I am the wider the latitude I have before having any muscle problems. I have been so strong, in fact, that I haven't had any episodes at all. Not even minor ones in a long time. 

"I haven't had any fried foods, pizza or ice cream in over a year. If I am at a restaurant I always leave a little just to show I have some discipline. (Again, a mental head game!) I also drink a lot of water. This is very important! For my diet: a reduction in fat intake, not eating after 6:00 p.m., watching the portion size, including not over-doing the 
carbohydrates, and the "Plan B concept" have all allowed me a better chance at success over a long period of time. It also has resulted in the best year health wise I can remember." 
                                                                                     --Jeff DuPonte