This title may be a little deceiving. Yes, I do love food, not really to the point of obsession (though I'm sure my spouse will tell you otherwise). I have phenylketonuria, better known as PKU, a rare metabolic disorder in which phenylalanine cannot be digest. Phenylalanine can primarily be found in protein which means I cannot digest protein. People with phenylketonuria are treated with a low protein diet; being left untreated can result in seizures, brain damage, behaviour problems, and more. Since this is a serious disorder, it is screened for only a few days after birth, as to ensure treatment can be given right away.
While developing, the tolerance that children will have to protein can fluctuate. I had a higher tolerance most of my life though I honestly don’t remember what my tolerance was as a child. I do know that since I was a teenager my limit was 12 grams of protein a day. Do you know how much 12 grams of protein is? A plain bagel is about 8 grams of protein. That’s plain. No butter, no cream cheese, no jam, no peanut butter, nothing. That means that if I ate a plain bagel for breakfast I would only be able to have 4 more grams of protein for the entire day.
Very limiting isn’t it? That’s where my obsession with food comes in. Food is delicious. Food helps us grow. Food is our fuel. And yet a high percentage of food is off limits for me.
Today for children with PKU (or other disabilities) there is an actually plan that the school and parents put into action to make sure the child is well taken care of and doesn’t eat anything that can harm them. This plan is called a 504 plan which is a legal document to ensure proper conditions are met. I’m a little older so when I went to school there was nothing my parents could do to ensure that I was eating properly besides let my teacher know about PKU.
The only time that I actually remember the teacher doing anything or caring about it was in the third grade. While other classes were having a pizza lunch my teacher prepared a picnic day where we ate fresh fruits and vegetables to learn what sort of things rabbits ate. I didn’t realize it at the time and remember having a great day with my friends, but looking back now, I see how my teacher had included me and feel touched that she cared. I’d like to say that the other teachers cared but they didn’t. The rest of my school career was spent dodging pizza or hot dog days and getting funny looks from my classmates for having lunches that were different from theirs. People accusing me of making up PKU for attention.
I was also lucky that I’m from a small town and that my elementary school didn’t have an a cafeteria so I could rely on my packed lunches. That all changed when I started high school. There was now a cafeteria to deal with. Of course I could still pack my lunch, and often I did, but of course I wanted to fit in and do what my friends were doing. Of course, in a cafeteria most often the only foods that with someone with PKU can consume is fries and salad. Not the most complete meal, and let’s face it, as a teenager my meals at the school cafeteria were usually fries and a bottle of coke, and sometimes I'd split a bag of M&M’s with friends. Not very healthy.
When I was growing up there weren’t very many alternative options for food. I remember being excited about a vegan cheese coming out that was low enough in protein that I could eat. It was a giant block of cheese, and didn’t really melt but rather got mushy. It didn’t really taste like cheese either. Had a strange after taste as well. I should also mention here that a lot of alternative or vegan foods still have a lot of protein, and a great deal of research needs to be done before any is purchased.
Let’s talk for a minute about those alternative foods. The cost of them is insane. Let’s do some math. A pack of cheese slice of the average person would cost them maybe three to four dollars whereas a pack of vegan cheese slice would cost me about six to seven dollars. Did I mention that the price for the average cheese is for 24 slices and the vegan cheese is 12 slices?
Now this is for regular food that can be bought at the grocery store. There’s also some companies that cater specifically to the PKU diet. Let’s price some of these out. Let’s say pasta. The average pack of spaghetti can be purchased for about two to three dollars, whereas a pack of spaghetti from one of these specialty companies can be purchased for about $12-$16. Gets a little pricey. Especially since the quality of the food does not always match the price.
Because of the cost of these foods and restrictions I have a healthy appreciation for food. I enjoy cooking, which is good because sometimes I have to be creative to be able to find things that I can eat. My close friends know of my obsession and will humor me by detailing things they may have eaten or restaurants that they went to. I guess with food I live curiously through others.
The most recent turn of events is the introduction of Kuvan. Kuvan is what I’d like to think of a miracle drug. Kuvan stimulates the enzymes that digest phenylalanine. Though it isn’t a cure, it drastically changes the life of someone with PKU. While on Kuvan, I went from being able to tolerate 12 grams of protein a day to 25 grams. This has made life a lot less restrictive. Before I had to sit down every morning and plan out what I wasn’t going to eat, and if something happened to change the plans, it sometimes couldn’t be fixed. Now I don’t have to sit down and make plans. I still have to think about what I’m eating and keep track of it, but now I can have that bagel and not regret it for the rest of the day.
I’m glad that I live in Canada where I do have access to Kuvan and have a support health team. Other places are not so lucky. My friends in the UK have been battling to get Kuvan for 10 years. If you would like to sign the petition for them to get Kuvan please go here.
There was a challenge that started a little while ago where people are trying to eat a limited amount of protein to see how it is to manage with the PKU diet. So I challenge you for one day to each a limit of 10 grams of protein. See what it’s like to walk a mile in my shoes.
Shout out to my dad who would try any low protein food that I thrust in his face. He’s a meat and potatoes guy, and the fact that he’d try my weird foods and medicines so I didn’t feel alone meant the world to me.