Living with PKU and staying on diet


Written By

Hello everyone, I am James a 22-year-old adult with PKU. This is my blog about living with PKU and staying on diet. Recently I graduated from Nottingham Trent University where I studied International Business. I have travelled across the globe, visiting Europe, the USA and Africa. I am a sports enthusiast regularly playing rugby union and training in CrossFit, as well as several outdoor activities including hiking and water sports.

Peer pressure and PKU

Growing up with PKU can be difficult as a child because every time you take your protein substitute or open your lunch box in public or around new people you always get the same old strange looks or you get bombarded with questions like ‘oh that looks odd’, ‘what is it?’ or ‘why does it look so different to my food?’ as well as the time consuming and challenging question ‘what is PKU?’

On or off diet?

So, when I first learnt about the idea of going off diet, my first instinct was that it would be fantastic as I would stop having to explain PKU and I’d be able to eat all the foods I could never have growing up like chocolate and bacon; foods I’d tried, loved the taste of and would occasionally sneakily eat behind my parents’ backs without them knowing, even though I knew I shouldn’t be doing it!

PKU Cake | Living with PKU and staying on diet

However, with age this perspective began to change, perfectly confirming the saying ‘with age comes great responsibility’. As I grew older, I began to notice the effects that eating too much protein had on my body, from headaches to more extreme mood swings, so I began thinking what negative impact it would have if I followed a ‘normal’ non-PKU diet every day.

Living with PKU and staying on diet

University was the place which confirmed my decision to stay on diet. As I started to become fully independent, cooking for myself, buying groceries, planning meals and adapting my diet for sports and health benefits. Combining this with additional online research, I realised how much staying on diet actually helped and benefited me. From having to research the nutritional information on foods for protein levels I found more and more I would also look at sugar and fat levels and then I would compare these against any alternative before selecting which I brought.

So inadvertently PKU allowed me to become more aware and health conscious. However, this freedom of buying whatever I wanted backfired slightly, as I tried foods which I would never have done whilst at home and probably shouldn’t have done due to their high protein levels, like bread, milk and chicken. Although, this was probably a blessing in disguise as I found that I didn’t actually like the taste of most of these products so moving away from a PKU diet would have been extremely difficult.

Low protein cooking – taking on the responsibility myself

I’m not the best at cooking, which I’m sure my mother would definitely confirm, so cooking generally can be quite difficult, but after 3 years of cooking for myself at university I am finally beginning to understand cooking with the low protein products and making meals. Therefore, swapping over to cooking ‘normal’ non-PKU foods would present me with a huge problem and something which would take at least another few years to understand, so I am happy sticking with what I already know and enjoy!

PKU salad | Living with PKU and staying on diet

Most importantly though, is my confidence and attitude towards PKU, leading to my personal belief that PKU shouldn’t stop me from doing anything. This belief has been passed down from my parents and combined with my personal attitude whereby I am completely open about my PKU so if someone asks a question about it, I will be completely honest and if they don’t like the response then that’s their problem. I can’t say whether it’s my attitude towards PKU and managing the diet, or whether it’s that I’ve been extremely lucky meeting friends.

They have all been so welcoming towards me; my close friends all understand the core items that I can and can’t eat to the point they know the kinds of restaurants we’d be able to dine in. I believe that this attitude and belief has meant that I have no problems with bringing my own pasta to a restaurant or saying that I am unable to eat in certain places so could we look elsewhere. As a result, I think that this has removed the social pressures around having PKU and following the diet to the point in which I don’t feel the need to move off diet and change because I am happy and comfortable following a PKU diet.

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