Has PKU Given Me an Eating Disorder?

My parents had always been preparing me to take control of my diet for as long as I could remember. As I was growing up, I should have been starting to prepare myself for that all-important time, when I turned 16. The time when it would finally be all on me to take control and manage my PKU diet – on my own. Instead, I was fully focused on the fact I would be coming off the diet.

Growing up through these years with that mindset led me to a path of discovery. I can remember when I started eating a whole bag of chips from the ‘chippy’ instead of weighing out the usual handful I would normally get. This is how I gradually took control and started really drifting away from my PKU diet, particularly during my last year of secondary school. I ate the things I had always eaten, many of which were those good foods that I had been using to disguise the bad foods on my plate. Those foods that, in many cases, I hadn’t been able to fully enjoy all my life. The foods I had always loved but had been forever dissatisfied with the small portions I’d endured over the years.

For me, it started by not weighing anything. Where I could, I increased the portion sizes of everything I had been restricted on. I would go around all my local chip shops (it didn’t matter how good or bad the chips were) and I would measure up each portion size. By the time I was about 16, I was eating enough chips, I now realise, to feed a family of three! After settling on my favourite chippy, I would happily and regularly cycle a 40-min round trip. Many times, I even walked it, if my bike was out of action.

The chips kept me satisfied for some time but eventually, I tried my first battered sausage. Of course, this addition wouldn’t stop me from still having the biggest portion of chips available! This continued until I had tried everything off the menu that appealed to me. I was feeling great. I didn’t feel any different and so I ventured ever further away from the PKU diet.

On my 17th birthday, I landed my first job, delivering pizza. Enjoying every aspect of the job, I eventually worked my way into management. The hours were long and at one point I was consistently clocking up 80-90hr a week! I was earning good money, having huge amounts of fun, and I was more than happy to be eating pizza for breakfast, lunch and dinner!

It was also around this time that a new housemate led me to discover bacon sandwiches and the BLT. The salad had never tasted so good! I was loving food to the extreme and I started eating as if someone was going to come and take it off me at any minute! Eating had never been so much fun. As these early years away from the PKU diet progressed I became overwhelmed by all the exciting choices. It was like there was something new to try around every corner.

I still hadn’t discovered the world of Chinese food yet. Sure, I had had a couple of vegetable dishes over the years, but I had barely scratched the surface. Nor that of an Indian menu. I had still never tried chicken, lamb kebabs, or even a proper burger. Still, other new worlds of food opened before my eyes.

Engulfed by choices, I began to forge a new relationship with food. Searching and eagerly trying these foods for the first time. I was fast developing a taste and an overwhelming desire for all these often unhealthy but extremely tasty foods. Every day I felt like I was the winner of the Golden Ticket in Charlie and the Chocolate Factory!

One normal working day, with my good friend and work colleague in 2003, I ended up at an impromptu pub lunch and business meeting. This introduced me to what would be my ultimate nemesis, a world of food I hadn’t explored yet that would change my eating habits forever – pub grub! Lasagne, bangers & mash, scampi & chips, steak & ale pies, and real burgers like I’d never seen before! Before I knew it, I was eating lunch in my local pub four or five times a week, for months and months.

Once I tried eating bangers & mash I wanted more. After eating those fancy burgers, lasagne, pies, and scampi; I wanted more and more and more! And so, with my newfound freedom, I ate more.

All of this came at a huge cost. I never had any spare money as it always got spent on food. The same as when I was a teenager, most of my pocket money was spent on cheeky bags of crisps and sweets. Now I was easily spending a hundred pounds a week, just eating out.

Eventually, my eating out habit started to influence what I was cooking at home and my portion sizes became excessive. I was literally eating and then sleeping almost immediately afterward (this is one of my many side effects of not following the PKU diet). The only thing that would get me through the days at work was planning a pig out (as I called it). Sometimes I would even pull a sicky so I could eat to excess, knowing I’d crash out for hours afterward.

I must have lived like this for about seven years, eating every meal like it was going to be my last. After a series of major events in my life, including ill health, debts, having to sell my home, and allowing myself to get into a series of very poor and unhealthy relationships. I found myself in a deep depression and I really struggled through the days. Bit by bit, I cut myself off from the world outside my front door. Back-to-back I would be watching seasons of 24, and films. I built up an extensive DVD collection over time whilst I continually munched on endless crisps and biscuits.

I was overweight, unhappy and unfulfilled in most of my life goals. It was then that I remembered the discovery I had made some years earlier, PKU was a ‘diet for life‘ I had buried my head in the sand with regards to returning to the PKU diet. Sure, the idea had been in my head for a few months after the initial discovery, but I hadn’t been about to give up my freedom. How was I supposed to make such a huge step backward?!

It had been about 12 years since I had come off the PKU diet and finally, in desperation during 2008, I reached out to my local pediatric doctor and dietitian. I spent a short six months back on the diet, lost four and a half stone, and admittedly felt like a new person. Sadly, despite those improvements, it was totally unsustainable. A serious lack of their support at the time, coupled with hating my new supplements, meant I was doomed from the start.

I quickly became miserable. Having broken away from feeling down and depressed, and very soon after restarting the PKU diet, I had returned to the feeling of low moods and depression. It wasn’t long before I caved in to my need for ‘real’ food (which was everywhere). I cracked under pressure, abandoning the PKU diet. I succumbed to the temptation and, once again, headed back to the road of overindulgence.

I buried my head in the sand once again and got used to living my life with very high phenylalanine (Phe) levels. Living on cooked breakfasts, burgers and the like, the deeper I got into this downward spiral and the worse my eating habits became. I was spinning totally out of control. Latching onto certain unhealthy foods, and eating patterns, I would just happily eat them day after day.

Another decade on, in more recent years it has really felt like higher Phe levels were having a bigger effect on me than ever before. I felt more stressed, more irritable, tired, and the brain fog had become unbearable. Some days I just couldn’t function at all, with minimal amounts of focus and concentration. My weight was totally out of control, I’d gained nearly 10 st in as many years, and I was now suffering from severe obstructive sleep apnea.

I do worry now about how much damage I have done to myself. During these many years, I have abused myself with food. My concerns are not just from a general health point of view, but the damage done by PKU. Very little is known about the future of PKUers. Indeed, very little is known about the effects of PKU on older adults. This is something we need to change, together. I don’t want to see the young PKU generations fall into the same ‘bear pit’ as I have. KUVAN must be here for the long term for everyone in the UK and so do any other new drugs and treatments of the future.

I grew up on the diet and I know managing it as an adult is extremely tough. It is near impossible when you are fighting the symptoms of high levels. Add to that an overeating disorder, or indeed any eating disorder, and it is impossible to adhere to a strict PKU diet. How do I know? From experience.

Setting up our future PKU generations to grow up on a super relaxed PKU diet (e.g. using KUVAN) and then expecting them as young adults to suddenly go on to a hardcore low protein diet, with zero experience, is going to have devastating results for many individuals and their families. We must keep fighting this together.

Thank you once again for reading and following my blog. As always, I appreciate your comments. Please keep sharing with family and friends and let’s spread the word. PKU is for life, not just childhood.

Stay safe.

Dan

#PKUisForLife