Coming Off the Diet

Reaching the age of sixteen, and more importantly, the end of my PKU diet, had been a goal I had focused on for as long as I can remember. Despite growing up knowing there was an end game, I didn’t just reach sixteen and say “Goodbye PKU, hello freedom!” It just wasn’t that simple.

When I was young, I had no idea what freedom of eating even looked like. I just knew that it meant being the same as everyone else. The need to not be different was all that drove me in those early years. It was the lack of fulfillment in my diet, at about ten or eleven years old, that fuelled my interest in the forbidden foods. Whilst I was wary of trying new things, I was driven by a new awareness that everyone around me wasn’t just rushing through every mouthful, just to clear their plate. People around me were really enjoying what they were eating; comments like ‘this chicken is so tender’, or ‘it’s not chewy at all’ really opened my eyes to the lack of different textures on my plate.

Whilst some moments were very much planned, like my first ever ‘Big Mac’, many big moments of stepping away from the PKU diet were just impulsed decisions. A moment of bravery, driven by curiosity and a real need for a variety of flavours and textures. The world had so much more to offer me! I couldn’t wait to break free from my boring PKU diet of fruit, vegetables and other synthetically processed foods and flavours. I always had this image of a wild-haired professor like ‘Doc’ from ‘Back To The Future’, in a lab somewhere in the world, concocting all these disgusting formulas; and using PKUers like me as his unfortunate test subjects!

Coming off the PKU diet was a very strange time for me. I was leading a double life. By day, at college, I was leading a perfectly normal existence; nobody knew about my diet. I went through my days as just one of the lads, eating sandwiches out of the cafeteria at lunchtimes, just like everybody I hung out with.

By night and at the weekends, I was very much still a PKUer. I didn’t tell my parents that I was slowly coming off the diet because I didn’t plan it. It just naturally happened over time. If I’m completely honest, the journey off of my PKU diet began when I started gaining my independence. Knowing I would be coming off the diet in a few years. Bite by bite, I slowly started eating my way towards freedom. I didn’t notice any changes in myself through those years (every PKUer whose been off diet will tell you the same!), this gradually encouraged me to keep raising the bar and pushing the limits of my protein intake.

When I finally turned sixteen, in my head I was free, but in practice I found it hard to just walk away from my supplements. I didn’t have the first clue how to start a conversation about stepping away from the diet with anyone. I certainly don’t recall having a conversation in my teens with my PKU support team and dietitian. We never spoke about what would happen when I turn sixteen; how would things work? Do I get up on my sixteenth birthday and shout “Woo-hoo!” and head straight for KFC to celebrate? Could I go out in the garden and burn all my PKU booklets and t-shirts? No one helped me, or my incredible parents navigate this important time together. There was no support at all. We were just dropped.

Landing my first job on my 17^th birthday; I started working for a well-known pizza company. This was an exciting phase of my life that, not only put real regular money into my pocket, but also introduced me to pizza! That job would also re-unite me with many faces from both secondary school and primary school; faces I hadn’t seen in years.

Within a week or two of working there, I learnt that, as an employee, I got fifty percent off! As I’m sure you can imagine, I soon plucked up the courage to try my very first pizza. I had only recently discovered melted cheese, in the form of cheese on toast and I was already hooked. My cousin Gavin had introduced me to it one Wednesday lunchtime. I had a half-day at college every Wednesday, and I would leave college at midday on my motorbike, and head straight to his house to turf him out of bed. We would then have cheese on toast and a mug of coffee whilst watching ‘Terminator 2’ or other epic nineties movies, before heading out to the garage to dissect our motorbikes for maintenance!

Again, Gavin had introduced me to cow’s milk. I had never had coffee without my Aminogram supplement. My supplement originated as a horrid gritty paste, which over time had been watered down into a gritty, sickly sweet, but yet an extremely bitter flavoured milk; the only thing that was strong enough to take the edge off that rancid flavour, at least enough for me to be able to take it without gagging, was coffee.

I’d never tried a real coffee before! I was surprised by its smoothness. It was sweet but not sickly sweet, and so creamy. I had no idea how to take ‘real coffee’ so I just took it the same way Gavin took his coffee, white with two sugars. I guess this kick-started my journey off PKU, as gradually, I dropped my supplement in favour of real coffee.

Remembering that first cheese on toast still makes me smile! It just blew my mind completely; the cheese I tried was Red Leicester (I loved that orange colour; it still attracts my attention in the cheese aisle now!) with Branston pickle on top. I remember my cousin dipping a large knife into the jar; this was to cover the knife with the pickle, whilst avoiding the crunchy lumps. I adopted this same tactic myself, until I discovered ‘sandwich’ pickle. I’d had enough of hard crunchy food! I just wanted to focus on the texture of that soft melted cheese!

It had been a busy Friday night delivering pizzas. Every time I returned to the shop, turning the corner on my moped, the smell of pizza in the air made my stomach spin with excitement. Needless to say, it didn’t take me long to give in to the attraction of that inviting aroma. I decided to get myself that ‘fifty percent off pizza’ in the form of a Garlic Pizza Bread, using some of my generous tips from that evening. Opening the box, I took in the view before me and then tucked right in. I remember thinking ‘Oh my goodness! What have I been missing all these years?!’

My next step was to progress to the all-famous Hawaiian pizza; my first ever real pizza! I was always conscious that it was high in protein before even adding having meat on it, hence my choice, with just a bit of ham and then pineapple, which was protein-free (in my head I was still taking everything step by step). Any odd mistakes or undelivered pizzas were often given to the crew members on long shifts or overtime, so opportunities soon came along for me to try every variety of pizza available on the menu, slice by slice!

Free pizza was like a dream come true, and my love for this Italian cuisine grew and grew. This led to me frequently purchasing pizzas, as I stepped away from the humble ham and pineapple and replaced it with my new favourite, Pepperoni pizza. During the summer of ’94, I ate enough pizza to sink a battleship. I was living the dream! I had money in my pocket, my own transport, an incredible social circle and my huge appetite for food was being satisfied beyond belief.

They were good times; one of the best summers of my life! However, unbeknown to me during this time (and this I have only discovered whilst writing this blog) the PKU guidelines had already been changed from ‘coming off the diet’ at the age of sixteen to ‘diet for life’. Although the guideline was changed in 1993, I didn’t find out about this until 2005. After getting my first computer connected to the internet at home. I accidentally stumbled across it. I was completely gobsmacked!

This blog has been quite a journey for me. Raising yet again, many more questions and emotions. If any of my blogs have raised any questions for you, please get in touch with me via the links to Facebook, or leave a message here. I can also be contacted by email at truthaboutlifewithpku@gmail.com

I hope to bring a Q&A podcast to accompany this blog soon, to answer some of the questions you’ve put forward.

Thanks for reading once again, and stay safe.

Dan

Sneak Eating into Adulthood

During my teenage years, my sneak eating grew to new heights. Despite the allowance of my Protein intake being the highest it had ever been, the PKU diet was still extremely tough. I just needed to eat all the time!

When I started secondary school, I got my own key, and I would be the first to get home most days. I would walk around the corner of my road expecting an empty driveway, and, on confirmation, I would excitedly pick up the pace. The all too familiar ‘Ready Brek’ man burning sensation inside me as I approached the door, key in hand.

I had about twenty minutes before I needed to leave and collect my younger brother from school. Once we had both returned home, Mum wouldn’t be very far behind! Hastily letting myself in, I didn’t mess around! I knew I only had a short window of time. Kicking off my shoes, I would bound upstairs, dumping my bag and uniform in a heap on my bedroom floor, change my clothes, and hurry back downstairs in a flash.

A sneaky packet of crisps, a biscuit; anything ready to eat which I could waft down quickly and easily, with no mess. I was always sure never to eat the last of anything. If the biscuit tin was full up, game on! If it was almost empty, then I would hunt for something else. Anything that would be less obvious it had been raided! Then, making a swift exit out of the front door, I would rush off to collect my brother.

During this period of my life, things were constantly changing. It wasn’t long before my brother was walking home from school on his own. I would just have to be home for when he arrived, to let him in. This meant my twenty-minute window home alone had now (thanks to my brothers very slow walking home, Cheers Bro!), become more like forty-five minutes.

This meant the end to my panicked rush home. Although I never hung around after school, my time home alone was too precious. I generally didn’t do any clubs, and I was very careful not to get any detentions. I would never do anything after school until I had gone home and ‘changed’ out of my uniform. Nothing would make me change my routine of going home to ‘stuff my face’; except for one person from school. That very special person, is now my beautiful wife!

Now that my brother had started walking home, I would let myself in and carefully check that the house was actually empty, before getting changed and hunting for grub. I had even started checking the garden and garage everyday now! This paranoid behaviour all started when I came home from school one day and, as I’d expect, there was no car in the drive. But to my surprise, when I let myself in, I found Dad unexpectedly at home! This was because the car had gone in for an MOT and Dad had finished work early. This really shook me at the time! I remember the disappointment and my heart sunk when I suddenly realised I wouldn’t be able to find any extra snacks that afternoon. It was also a real wake-up call! A huge realisation that getting caught mid munch was a very real danger.

It was at this time I developed the habit of sneak eating while standing in the lounge. I stood, transfixed on the lounge window looking up our road, watching out for an early returner! I started gobbling things down; they were barely touching the sides. Looking back, there was no enjoyment in this. I was on full alert at all times, my heart pumping hard! I was sure that I’d get caught sooner or later, and the thought of that scared the life out of me.

I was around 12-13 years old when I discovered it was a much safer option to go to the shops to buy and eat my food out instead. Best of all, I could go out with my mates and do it without sacrificing time with them to eat. So gradually, this became the new thing.

Whilst all my friends started going to the shops and into town at the weekend, spending all their pocket money and paper round wages buying the latest clothes, trainers and music; I was spending every penny I had on food!

I never had the latest clothes. All my Iron Maiden and Metallica T-shirts were old ones, that were ‘reduced to clear’. I just couldn’t afford to have the latest stuff and fund my eating habit.

When I went into town, whether on my own or with friends, I would always get off the bus, walk through the crowded market, into the shopping mall, and straight to the bakers. First purchase was a sausage roll from the ‘Swiss Chalet’. Sausage rolls were my thing. But, like I have mentioned previously, it was not about the sausage, but the pastry. I always had to have my pastry ‘fill’ and sausage rolls just happened to be the cheapest option. If any other pastry had been cheaper, then I would have bought that instead. On the rare occasion that a vegetable slice was available, I would have always opted for that instead.

My visit to town always ended with a visit to ‘McDonalds’, or preferably for me at the time, ‘Burger King’, as I would get to have onion rings as well as fries.

Prior to us heading home via the bus stop, we would always end up in a music shop. My friends would be buying T-shirts and/or albums; but, after eating my way around town, I never had much money left and would only have enough to buy a couple of singles, or maybe, on the odd occasion, enough to get a marked down T-shirt.

During this time, I was still sneak eating at home when a safe opportunity presented itself; while eating away from home progressively became my new normal. As I turned 15 and 16 years old, I spent more and more time out and about, with sleepovers becoming more frequent. I began getting a new fulfilment from eating with others; others who didn’t really know a great deal about my PKU diet. I never spoke about my PKU and, as I moved into new circles of friends, it was a huge relief to just blend in with everybody. Consequently, my PKU gradually became my secret and slowly, I moved away from it, in the knowledge that, being over sixteen I had outgrown the need for my restrictive PKU diet.

Writing this article has been tough. I have had to look really hard at myself. I have not only started dealing with the guilt I carry from this period of my life, but I do now question whether I have also been fighting ‘Binge Eating Disorder’.

I want to finish this by giving a special thanks to my fantastic parents. I have been truly blessed to have them. My Mum has worked tirelessly, cooking for me over the years and organising menus for school and camping trips etc; and I took this all very much for granted, as I guess all children do at that age. But I now know and appreciate the hard-work, dedication, support and love that was poured into my life from the moment I was born and every day since. Thank you both for everything.

Images from GettyImages and NSPKU

Sneak Eating in Childhood

The very first time I made the snap decision to start sneak eating, I must have been 4 or 5 years old. Back then, the house we lived in had the bathroom downstairs, at the very back. The only way to get to it was through the kitchen.

I remember that day clearly. Mum had left the kitchen and had gone to another part of the house. I spontaneously opened a cupboard door, grabbed a slice of bread from an opened loaf, and then dived into the bathroom to hide, while I devoured it.

I remember how I felt during that moment; that feeling of sheer panic when I almost got caught. That moment when Mum returned to the kitchen, while I was still eating that slice of bread, has stayed with me forever. Having stuffed it all into my mouth at the point I heard her returning, I was fully committed. To make it worse, Mum was now asking what I was doing in the bathroom! Unable to speak, I continued chewing ferociously in silence. I felt like the ‘Ready Brek’ man as I burnt inside with adrenaline! Mum had realised I was up to something, and subsequently, I remember getting told off, after sheepishly appearing from the bathroom.

Unbeknown to me at the time, this would become a regular habit in my life. I hated doing it even at that early age (and it never got any easier). I always felt extremely guilty. It felt very wrong, like I was stealing; but I was hungry!

I can’t remember the second or third time I took the opportunity to sneak eat, but I do know that the habit continued to grow. It started with the items I could easily get, and just the foods I knew I could eat. I was too scared to try anything forbidden by my PKU diet. I knew it was dangerous, and so it started with a biscuit from the biscuit tin or a bag of crisps; anything to ’fill a hole’.

As I got older, the habit of sneaking food grew with me. Over time, one sneaky biscuit became two, then three. At family gatherings, I would find myself hovering around the buffet table. I would wait for ages until everyone had left the room or area around the table. Then I could add a few extra crisps to my plate. Sometimes, I would quickly eat something and then replace it on my plate, before sitting with everyone in the next room. As I became older (about 10 years old), it then progressed to shoving a sneaky cocktail sausage in my mouth when no one was looking, or a party sausage roll; and so it continued. Anything I could find that would fit in one mouthful would be my target; and so my interest gradually turned to try new things.

This pattern of behaviour became a way of life for me. I can only describe it as some kind of survival instinct. This behaviour has never sat right with me. It felt wrong on every level, yet I felt I had no other choice! I was always hungry and increasingly dissatisfied with my PKU diet. It sounds ridiculous, but the satisfaction I had from a cocktail sausage, my goodness! The flavour, and the texture was like nothing I’d ever experienced. My mouth used to water at the mere thought of a chance at getting to eat something like that.

When I was sat in the car, and we would be driving to an Auntie’s house for tea; whether it was a party or a general gathering, I was already thinking about the buffet table. Depending on the occasion, or which relative’s house we were going to, I would already know what was likely to be on the buffet table. I would already be hoping to see party sausage rolls; they were my favourite! Although I loved my PKU pastry (it was unique in both its flavour and texture), having discovered ‘normal’ pastry, I just couldn’t get enough of it.

I always looked forward to family events immensely; whether it was barbecues, birthdays, or Christmas. It wasn’t just because I loved spending time with all of my family. I would also be very excited at the thought of a buffet table, and the treats it had to offer me. Every child loves the exciting build-up to Christmas. Putting up the Christmas tree, decorations, letters to Father Christmas and I was no exception. But for me, Christmas had another exciting event to offer. It was buffet season! We were talking back-to-back buffets, for a week or more! By January, I had certainly had my fill of vol-au-vonts, as well as sausage rolls. I even ate mushroom vol-au-vonts on one occasion, just to get my pastry fill (and I hated mushrooms)!

For me, one of the things I have always identified as a PKUer is the majority of our low protein food is either soft or crunchy (or both). Neither of these take much chewing; a few chomps and it’s gone.

As a child, I would always be the first to finish eating at the dinner table. I remember always being told to slow down, that I should chew my food properly. “You need to chew your food at least twenty-five times before you swallow it”, my Dad would advise me from time to time. I always took this challenge very seriously, but I could never understand why, before I had reached the tenth chomp, I was chewing on fresh air?! Despite this, and trying my best to continue taking it seriously, I would sit there and carefully count, chewing an extra fifteen times, even though my mouth was empty. Hence, I quickly reverted to my original eight chomps a mouthful. It felt like I was trying to beat ‘The Guinness Book Of Records’ for the greatest number of chews ever, whilst eating a single mouthful of roast dinner (with no meat)!

Consequently, as I grew older, so did my frustration at the lack of variety and satisfaction the PKU low protein diet offered me. As I grew into my teens, my appetite grew massively. I had many successful (or so I presumed) years behind me of sneak eating, that had meant my confidence was at an all-time high. Despite all the extra protein, at the time, I always felt fine. I was never ill. I never felt the slightest change in myself (although looking back now, I have a very different opinion), so I continued pushing the boundaries of my PKU diet.

Gradually, this continued to build confidence in me, allowing me to normalise the habit of sneak eating in my head. I convinced myself, over time, that I was in control, and the habit became bigger and bigger. Instead of just taking the rare occasions to sneak eat, I started looking for more frequent and safer options. It was at this point I started creating my opportunities. As I got older, this became easier, and I became braver, taking more and more risks. It had become a completely normal part of my life.

My next blog continues my story of sneak eating through to adulthood, which will be available here, in 4 weeks.

Thank you for taking the time to read this. Please comment and share with your friends and family. You can also follow me in between blogs, by clicking the link to my Facebook page.

Take care and stay safe.