All about the trials and tribulations of living with Phenylketonuria

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Taking a break from blogging

Hi everyone,

You might have noticed that Living with PKU has become a little quiet lately. For various reasons I’ve decided to pull back from blogging and my efforts in PKU advocacy. The blogging will hopefully be a temporary hiatus and I still might get the chance to post once in a while until I can get back to how often I’d like to be posting.

At the moment I’m just not in a situation where I have the ability to cook as much as I like and… well… my cooking experiments are pretty much the entire basis of this blog :) Hopefully this will change in the near future but I’ve just moved from Australia to England with my husband and baby daughter and until our belongings arrive via a sea shipment we’re living in a converted barn at my mother-in-law’s. It’s nice (apart from the fact I keep bashing my head on the low beams!) but small and I’m a bit worried about doing too much in the kitchen because aside from the fact that it’s very small and not very functional, the splashback hasn’t been done yet and I’m afraid of ruining the plasterboard!

On my move wishlist is a good sized kitchen so hopefully that will see the return of my low protein cookery experimentation and blogging :)

As for the PKU advocacy, well… I’m pulling away from that for reasons that I won’t go into as I don’t think it would be right of me to be particularly public about the events that have led up to this decision but I do not forsee me feeling compelled to do more advocacy work any time soon. Maybe I’ll get back into it one day but for now I do not have the heart to keep going with it.

Please keep coming back and using the recipes I have posted so far and I’ll see you all when I am in a position to cook more :) Happy cooking!

Decadent low protein PKU chocolate cake

I was going through my stack of recipes for a friend last night and I came across this recipe for a low protein chocolate cake that I had. It’s good! Really good! In fact I’m not entirely sure why I haven’t made it more often (wait, yes I am… I was pregnant and didn’t think I could control my chocolate cravings if I had anything chocolatey in the house lol).

I thought I had blogged this recipe quite a while ago but I’ve gone back through the site and I can’t find it so I’m posting it for you now.

I am not sure where the original recipe for this chocolate cake came from, but I know it has been around for a while and it’s delicious. This recipe is not free, and the protein content is entirely dependent on the brand of cocoa you use, so make sure you calculate it before you start eating.

The cake is rich, most and light in texture – my husband (non PKU) loved them and I ahve served them to non-PKU friends who didn’t seem to notice they weren’t normal high protein cupcakes! I found the cooking times in the recipe weren’t that accurate and that I had to cook my cupcakes for a lot longer than stated in the recipe, though this may be because I used silicon cupcake cases instead of paper cases (and had never used them before nor since!). Make sure you don’t skimp on the sifting/whisking step as that is part of what makes this cake recipe so darn good!

This chocolate cake is light, moist and best of all it's low pro!

6 tbsp oil
2 tbsp cocoa
1.5 cups of Loprofin
1 cup sugar
1 tsp baking powder
1 cup of cold water or coffee
1 tsp vanilla extract
1 tbsp vinegar
1 tsp salt

Pre-heat oven to 175 degrees C

Sift the Loprofin into a bowl. Add the remaining dry ingredients and whisk together (the whisk is important as it helps to keep the air in the mixture).

Add all liquid ingredients and mix on high with an electric mixer until the batter is nice and smooth.
Pour the mixture into a cake tin or cupcake cases.

Bake at 175 degrees C for 35 – 40 minutes for a cake, or 20 – 30 minutes for cupcakes. The cake is done when a skewer comes out clean. Decorate as desired and don’t forget… you can have some fun with it! This recipe freezes well.

Low protein omelet and quiche from Cook for Love

This coming weekend I’m going to a tea party so tonight I decided after months and months of procrastinating to try the Eggcellent Mix on the Cook for Love website. One of the things that will be served at the tea party is mini quiches so I thought it would be a good idea to try to make some low protein ones I could take.

I made some mini quiches for dinner tonight but I didn’t read the full recipe first (naughty!) and so I didn’t realise I had to let the quiches sit for at least 20 minutes before removing them from the tins so I decided with some of the remaining mix I had left to attempt and omelet. I’ve tried low protein omelets before and while they’ve been sort of okay I’ve never really gotten into them. They have been too much work for an underwhelming result.

The quiches didn’t take too long at all – most of the time was in the cooking – 25 mins in the oven and a min 20 minute resting period. So, while they were cooking I set to work on the omelet. I was done in less than 10 minutes, from start to finish! Amazing! I think I have a new favourite fast and easy meal :)

Omelet made from the Eggcellent Breakfast Mix at

I loved it! It was delicious. Only problem I had was that I forgot that since being pregnant raw onions DO NOT agree with me – and of course I added them into the omelet so thanks to that I’m feeling a little rough now (DEFINITELY the onion… its a very distinct feeling).

Next up was a test of the quiches. I struggled to get them out of the muffin tin at first – they didn’t just tip out and I thought they’d fall apart if I tried to spoon them out but I was wrong. Once I carefully got them out with a spoon they were perfect.

Mini quiches from

These too were lovely, though I enjoyed the omelet more as I found these a tiny bit bland. I will have to play with the fillings I think (the recommended filling is something we don’t have in Australia – Morning Star imitation bacon strips). Don’t get me wrong, they were still delicious, but I just didn’t get the flavours quite right for the fillings I chose.

You can find these recipes at You do have to register but registration is free and it’s well worth it :) Admittedly yes, you DO have to make the baking mix yourself and I find quite often that the ingredients are not available in Australia but Brenda, who runs Cook for Love is fantastic at coming up with substitutions for ingredients we can’t get in Australia and the baking mix makes the best low pro products I have ever made or eaten (and said low protein products frequently get devoured by my non-PKU husband and friends before I get a chance to eat them!).

I’m back :)

Well, I apologise for my absence and lack of posts over the last few months, however I assure you that it has been for a very worthwhile cause.

I’m very excited to report that my husband and I are expecting our first baby, due in January 2011. I haven’t had the nose (or stomach!) for cooking since I have been pregnant but the good news is that my smell senses seem to be calming down a bit, which means I can get back to my favourite past time and get myself back into the kitchen!

After already losing one baby last year we decided to be more cautious and keep the pregnancy fairly quiet until I reach the second trimester, and I have made it, relatively incident free.

I’m certain that you can expect quite a lot of posts on PKU and pregnancy too. I will try my best to keep these posts as informative as possible, but right now I’m just going to tell you a bit about my personal pregnancy journey so far.

I won’t lie to you. Managing PKU and pregnancy is a lot harder than I ever imagined it would be. I found the pre-conception diet easy and last time I was pregnant I got my levels down and they stayed down, but then I only made it to 6.5 weeks so I never had to deal with morning sickness or huge amounts of fatigue.

The reality of PKU and pregnancy has been a bitter pill to swallow for me. I honestly thought it would be a lot easier than it has been because I found the preconception diet so easy. Now I realise that thinking like that was rather naive of me. The fact that I am writing this blog from a hospital bed with glucose being pumped through my veins (and this is my second night) is a testament to that. No, it’s not from the morning sickness (well, it kind of is I suppose), but my levels have been very erratic. As it turns out, PKU and pregnancy is completely different to ‘normal’ PKU. Your body just doesn’t respond in the same way and it’s a steep learning curve, but one that I have no doubt will be well worth it in the long run. I think my levels went so unstable because I basically stopped being able to eat. With week 6 started the morning sickness (seems to be the time it hits for a lot of women from my dabbles in forums!) and with that came a total intolerance of all low protein products except stuff I could bake from the baking mix. I haven’t been able to stomach any of the biscuits, pastas, bread, Milupa etc. On top of that baby decided he/she doesn’t like fresh veggies! I’m hoping this isn’t a sign of things to come when Cupcake (I have nicknamed the baby Cupcake as the joke seems to be that I have a bun in the oven/am baking, plus I hate referring to it as ‘it’) is a toddler! It has certainly made life interesting and despite charging myself with calories (and gaining 7kg in the process…. ouch!) my levels have been very erratic (up as high as 580) just from a lack of volume of food. I’ve heard this is actually quite common (not meaning to scare anyone!) and they have admitted me to hospital to get my levels down. Unfortunately I’ve been put in the gastroenterology ward, simply because thats where the first available bed was, and thus am surrounded by people vomiting every 5 minutes. Not good for a sympathetic vomit-a-phobe like myself, but hopefully I’ll be going home tomorrow as it turns out as soon as I started eating more food (same phe intake), my levels started dropping, and I’ve been eating proper food for about a week now. Yay!

Anyway, pregnancy has had its perks thus far. I have discovered a few great recipes (admittedly cooked by my mother who has been visiting with me for a week) which have gotten me through the last three months that I plan on sharing, plus I’ve found some great new products that are available straight off the supermarket shelf.

So, as soon as I get home and recover from my lack of sleep from my hospital stay I will start posting things. I hope you enjoy them! Personally, I have been delighted to find some of these products and they have been a godsend to me!

Taking a break…

Hi all :)

I hope everyone is doing well.

I thought it was probably a good idea to make a quick post to let you know that I’m going to take a bit of a break from posting on the blog for a while. The reason why will be revealed in time, but for now I’m not doing a whole lot of cooking. If something comes up that is post worthy I will of course still post it, however chances are there won’t be much going on here for the next couple of months or so.

Happy cooking all!

Healthy packed lunches for adults with PKU

This year I have been discovering that eating healthily with PKU is possible, and so is weight loss.

I have lost a total of 1.5kg since mid-January (Another .2kg this week!). Okay, so I know that is a very slow rate of weight loss, but as they say, slow and steady wins the race!

Slow weight loss is a good thing because it won’t push your levels up, plus the more slowly weight is lost the easier it is to keep off (and I think this may be where I have gone wrong in the past – previously I have gone at weight loss hell for leather, lost very, very quickly and usually either burnt out or injured… or both).

Anyway, onto my (very brief) topic for today.

It *is* possible to do healthy packed lunches for adults with PKU. I’m actually on my way to uni at the moment, so I will do a more comprehensive post on this later (probably tonight), but I just wanted to post a picture of my lunch today.

It is possible to have a healthy and satisfying PKU friendly packed lunch

Now this may not look that filling or that there is much ‘substance’ to it, but a lunch like this is surprisingly filling and healthy. The most unhealthy thing in there is the museli bar, which is my 2g of protein for lunch. By watching my fat and sugar intake (I have completely cut Coke out of my diet, and I used to drink it every day) and increasing incidental exercise I have started losing weight as a result of this.

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