Out on the town with PKU!
Hello everyone, my name is Clair Willcocks, I am 27 years old and I am Galen Medical Nutrition’s new PKU blogger. I am an adult with PKU and I was diagnosed with Classical PKU 8 days after birth. I am on 5 exchanges of protein a day and currently taking the PKU EASY Microtabs substitute 6 times a day.
But over the years, there have been huge innovations made with low protein food and not only has the taste improved but there is also now a huge range of different types of food from, biscuits, rice, pizza bases, flour, snacks, all types of pasta, milks and puddings. The range doesn’t just apply to the foods but also now how many companies there are, each one offering something different and all striving to make the best possible food to cater to the low protein diet.
So why is low protein food important? For me, being Classical PKU means I can only have 5 exchanges of protein a day, which seems to be around the same amount of protein as most cans of ‘crème of’ soups! As I’m sure you can imagine, that doesn’t give me much wiggle room for how much I can eat in a day. When I was off diet, I thought I could just get by on supermarket products like cans of soup, crisps, chocolate bars and potatoes and that did work for a little while, but I realised because I was relying on ‘protein’ food for my main source of nutrition and energy, my exchanges in a day could range anywhere in a day from 10 exchanges to 3, my levels were always high and it felt like I was always hungry.
When I decided I wanted to go back on diet, I got as many samples as I could from all the different food companies, some foods I had to request from my dietician and for others I contacted the company directly. When I found the foods that I liked, I then emailed a list over to my dietician so they could contact my GP. Unfortunately, the GP’s can sometimes be the biggest issue with trying to get access to low protein food but if I had any trouble at all, I would let my dietician known straight away and she would always be ready to help with a strongly worded letter or telephone call.
I also struggled with home delivery companies, it may just be I had a bad experience, but they just never seemed to work out for me, so I decided I would directly order my prescriptions from the GP and pick them up myself. After all that work, I’ve now got a great list of food to choose from and I have a regular routine of ordering. Once I realised it can take anywhere from 2 days to a week to get the food ordered in, I always make sure to order food way before I’m due to run out.
I won’t lie, at first low protein prescription food seemed a bit bland, especially after being off diet when I was eating all sorts of things that were tasty but of course very bad for me. To make my food more interesting, I decided to try all sorts of different vegetables, herbs, spices and all the vegan food that was low in protein I could get my hands on.
I mixed and match all of these different things to find what worked for me and now I can’t imagine life without them, as they not only add flavour but also a bit more bulk to a meal; they are the difference between just having a plate of low protein pasta to having a delicious meal. I really enjoy finding new ingredients I can use and bulk cooking meals, which means not only do I have a delicious filling meal in the evening but also left overs for lunch at work the next day.
Back on diet, I now know low protein food like pastas, rice, snacks and flours all provide the necessary energy that ‘normal’ protein food just can’t give me. Having low protein food means I can have a filling meal, without worrying about weighing or counting, snacks to keep me going through work and delicious pancakes for breakfast. Just because I’m on diet, it doesn’t mean it has to be boring!
Here are some of my favourite PKU meals I really enjoy, and not only do these all use low protein prescription pasta, bread, flour, pizza bases, but all of them are also either under 2 exchanges or completely free!