All about the trials and tribulations of living with Phenylketonuria

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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.

Another thought on PKU and weight loss

This is just going to be a very brief post.

I have not been paying attention to my scale weight at all recently, simply because it is so depressing to me. Well, I decided to be brave and got back on the scales today only to discover that since starting uni in February I have lost 1.3kg.

Nothing has changed with my diet, so this leads me to believe that my idea of activity being one of the biggest factors in weight loss for we PKUers.

Activity is the biggest change in my life since I last weighed myself. Pre-February I did very, very little. I sat on the couch job hunting for most of the day and went to the gym on the odd occasion. Now I am running to and from classes on Monday and Tuesday, teaching a year six class on Wednesdays and Thursdays (so running around after them and on my feet a lot) and I work in a children’s play centre running the cafe and co-ordinating kids’ parties on a Friday and one day on the weekend – in other words, I’m on my feet… a LOT.

It will be interesting to see how it goes in the coming months, especially now that I have taken the first step to getting back into the gym.

Anyway, some food for thought, so to speak! :)

PKU Awareness Day 2010 – PKU Picnic in the Park, Melbourne

Please note that the time for the PKU Picnic in the Park has changed. The picnic will now commence at 1pm to allow for families with children involved in Saturday morning sport
Below is the information for the 2010 (and first ever!) PKU Picnic in the Park. I’m so excited that Jeremy from Vegan Perfection has generously donated some Cheezly and also BonVita Rice Milk Chocolate (that was the chocolate I used to make the low pro Easter eggs) for everyone at the picnic to try.
I sincerely hope that if you are from Victoria and you have connections in any way to PKU that you come along.
If you are planning to attend please let me know – the biggest reason for this is so I can let you know if we have a venue change due to wet weather! :)
The images below do come up a bit small, but if you click on them they will open in a new window and you can enlarge them.
See you at the picnic!

An invitation to PKU Picnic in the Park in celebration of PKU Awareness Day 2010

A map showing the location for PKU Picnic in the Park

The challenges of losing weight with PKU

Many of us know that losing weight on the PKU diet can be a real challenge. Of all the PKU people I know, a lot of us fight a constant war with weight issues. Some PKUers struggle to gain weight, but the majority of people with PKU I know struggle with weight gain, being overweight and obesity.

Despite what our dieticians tell us there is no easy solution to losing weight with PKU. I struggle a LOT with weight. I have 30 – 40kg to lose to be at my ideal weight, and my dietician has always told me just to focus on the diet and the weight will fall off. But you know what? It never has. I have been absolutely perfect on the diet for all of 2010 so far, maintaining levels below 500, and mostly around 200. That should mean, according to my dietician, that I would be losing weight but I’m most certainly not. If anything at all I have continued to gain weight, despite the fact that my lifestyle this year has been so much more active.

Something I read recently (I will try to find it) explained how the low phe diet actually counteracts weight loss. That isn’t much help to those of us with a bit – or a lot – of weight to lose, especially if like me you’re determined to stick to your low protein diet while losing it.

Recently I was talking to a couple of friends in the US and asking what they do to lose weight on the PKU diet. They all said that they go onto LNAA treatments for a while and follow a diet of lean meats, grilled chicken, grilled and steamed fish and plenty of fresh salad, fruits and veggies. Well, we in Australia can’t do that, but you know what? I’m not so worried about it because if I was on LNAAs I think I would probably be worried about the effect of all the phe in my blood doing permanent damage to my internal organs, even if it wasn’t affecting my brain.

But still, where does that leave us? Well, we can do exercise and we can reduce sugars and fats in our diets, though given that a lot of what we can eat is based on sugars and fats that isn’t always the easiest thing to do. Cutting out soft drinks will help a lot with this – if you’re like me and this is something you find exceptionally difficult, Golden Circle does a range of sugar free fruit flavoured soft drinks that are diet and sweetened with Splenda.

I think perhaps exercise is the most important element to weight loss with PKU, as well as attitude. I recently signed up to a website called No Excuses Workouts and I get a motivational email every day with a fitness challenge in it. Now admittedly I haven’t done the challenges but I’m going to be making a concerted effort to do them when I get home from my break in Queensland.

So lets talk a bit more about exercise. Firstly, I would like to dispell one HUGE myth. Weight training WILL NOT make women bulk up. So many women avoid weights because they truly believe that they will end up looking big and buff if they do weights when in actual fact, weight training is an absolutely essential component to fat loss.

It is absolutely essential when trying to lose weight to do a combination of both cardio-vascular exercise and weight training. Cardio exercise fires up your heart rate, gets you sweating and gives your metabolism a boost – helping you to burn fat. Cardio exercise is anything that raises your heart rate – walking, dancing, swimming, cycling, running etc. Basically you want to be able to be puffed but still able to hold a conversation, and contrary to popular belief you don’t need to run your little legs off. If it gets your heart rate up it’s doing its job. One of the best cardio exercises you can do for fat burning is intervals. That means you get your heart rate up and then you have a short rest before doing it all over again. Rinse and repeat. So, as an example you could do a five minute gentle warm up walk, then walk at a good place for one to two minutes, then jog for three. Do that for half an hour, including a cool down at the end.

If you have an iPhone or an iPod Touch you can download free interval applications that will help you with timing. I have downloaded the GymBoss application and programmed in an interval workout from the No Excuses Workouts website and it’s great. Only thing is, I pushed myself too hard and haven’t done it again, but more on that later.

The metabolic boost you get from cardio is short but sweet. It’s FABULOUS for fat burning, but within 7 – 8 hours your resting metabolic rate (the rate at which your body burns energy at rest) will drop back down again.

Weight training, as I said, is just as essential, if not moreso, for weight loss. Weight training build muscle, the more muscle you have the more energy your body burns. When you do a weight training session your resting metabolic rate will stay raised for the next 24 hours or so, and when it drops down it will stay just that bit higher than it was before you worked out due to the fact that you will have gained muscle.

I should point out right about now that just because I say weights it doesn’t mean you have to do weights. Anything that provides you with resistance will give you similar results AND incorporate a cardio element at the same time. Some examples of this are swimming, walking with wrist weights, water aerobics and Zumba (as long as you use the toning sticks!).

Of course, if you want to you can join up with your nearest gym and ask them to design a weights program for you. Many gyms also offer classes that will help you on your way including spinning/cycling, body pump (a weights class to set to music), yoga, pilates, aerobics and even dance classes.

You want to be trying to exercise 3 – 5 times per week for at least half an hour to start seeing results, but bear in mind these things don’t happen overnight and attitude is key. You need to ensure you have manageable realistic goals (if you have a big goal like me then break it down into more manageable, ‘bite-sized’ goals so its not so overwhelming). Don’t beat yourself up about messing up with food or missing a day of exercise – just get back on the wagon the next day. According to personal trainer Jonathan Roche, 90% of failure when it comes to weight loss is because people quit before they start to see results.

Click here to check out the No Excuses Workouts site – you can even download a free interval workout and a weight/resistance workout that you can do at home without any special equipment (just your own body weight), and I keep hearing about people getting really good results after they’ve been incorporating these workouts 3-5 times per week into their lives.

There has been some speculation that doing ‘hard’ cardio (for example a spin class) can actually raise our phe levels because it burns so many calories that it can send our bodies into a catabolic state. I’m not sure about this – personally I believe that if you eat a small, healthy snack before hand and have some formula after this shouldn’t happen (especially given that formula is full of protein). I’d be interested to see what everyone else thinks of this.

Obviously with weight loss diet is very important too, but this is a huge stumbling block for we PKUers, especially if you are very restricted. For obvious reasons we can’t do ‘traditional’ weight loss diets like Lite n Easy or Jenny Craig, however I should point out that some PKUers have done Weight Watchers with some success (if you’re one of them I’d love it if you could comment about your experiences below!).

Over the coming weeks I’m going to try to dig up lots of healthy PKU recipes that might help us on our respective weight loss journeys and I’ll post them as I find them. I’m contemplating going and buying a slow cooker and I will see what sorts of concoctions I can come up with.

Okay, that’s me done for now. Please feel free to add anything you feel is relevant to this discussion as well as any hints or tips you might have. I’d also recommend you check out PKU and Healthy Too if you haven’t already – the author, Hunter, is a PKU adult and a registered dietician, and she makes some great posts about these sorts of things. She told me just the other day she was going to write a bit about PKU and weight loss and I can’t wait to see what she has to say!


I have a load more recipes to post from things I have cooked recently… crumpets, vegetable tart and a really delicious vegetable pie.

I’m on Easter Break after Tuesday so will get onto it then… please check back soon!

An improvement on the PKU bread recipe posted recently

I have been doing a little experimentation with some of my cooking lately, and I wanted to share a discovery I have made with you all.

While making bread last week I discovered that by adding an extra tablespoon of metamucil the texture of the loaf is further improved. The bread comes out lovely and soft… delicious warm!

Click here to go to the recipe

An interview on being married to a PKUer

As mentioned in my last post, Debbie also did an interview with my husband, Ed, about what it’s like to be married to someone with PKU. In the interview Ed talks about how tough it can be on our relationship when I struggle to comply with the strict diet and keep my levels within a decent range.

PKU pancakes with savoury topping

While I usually really enjoy making and eating low protein food creations, pancakes are something I’ve never mastered… until now that is. I don’t know if it was my cooking, the recipe I had or the combination of the two, but every time I made pancakes they turned out oily, gluggy, stark white with burnt bits (they never browned) and generally icky

PKU pancakes with savoury topping


So, having boycotted PKU pancakes for years I was stuck for breakfast ideas today and I decided to give them another go. I dug out a recipe that I vaguely remembered seeking in the PKU Handbook and off I went! To make up my 2g of protein I made up a savoury topping, which I will also include below.


110g low protein flour
200mL Milupa PKU milk (you can use any PKU milk but this gives a creamier flavour)
1 heaped tsp egg replacer
Vanilla extract- I started with a capful but ended up pouring more in after taste testing the batter
For crepe style pancakes add 110mL water


1. Mix the dry ingredients with 3 tbsp of liquid to make a paste.
2. Gradually add the remaining liquid to make a smooth batter to a pouring consistency
3. Heat a little oil in a medium sized frying pan (I like to put a tiny amount in then rub it around with paper towel to minimise oiliness). Pour in a small amount of batter – just enough to cover the pan or for one pancake (it depends on the consistency as to the kind of pancake you can make)
4. Allow to cook on a medium heat for a few minutes – look for bubbles forming in the top of the batter – then flip over and cook the other side.
5. Repeat with the rest of the batter.

To serve add a savoury topping, sprinkle with lemon juice and sugar or fill with fruit fillings, a jam of your choice or drizzle with golden syrup.

Savoury topping

Chop up 1/2 – 1 tomato, dice some onion and allowed amount of mushroom and your favourite low protein cheese (I used Cheezly sour cream and chive flavoured cream cheese). Mix and season with cracked pepper and salt if desired and either fill pancakes with the mixture or place it on top. Enjoy!

A bit of an update

Well a couple of weeks back I made a post saying I was trying to get my levels down for pregnancy again and thus going back onto the preconception diet… well as a good friend pointed out to me I actually posted it to the wrong blog – my weight loss blog! Thanks Anna! :-D

Anyway, I’ve been doing the preconception diet for a little over a week now and my levels have dropped from 830 on the 22nd of January to 530 on the 25th of January. I’m pretty stoked with that drop. I’ve been doing 6g and four lophlex a day and it’s paying off. The only thing that is really worrying me at the moment is that my clinic seems to take a long time to get my levels back to me. I know from previous experience how fast my levels drop once they get going – I can be at 400 one day and at 65 or 70 two days later and feeling horrible for it. I’ll just see how it goes I guess.

I’ve been doing okay with the diet, though admittedly my diet has become quite bland and boring. I am very uninventive at the moment for some reason, and I’m the first to admit that my determination to not eat anything fatty or high in sugar means I am cutting out a lot of foods that kept me feeling full and thus happy the last two times I’ve been on the preconception/MPKU diet. The last two times I did a lot of baking – muffins, biscuits, cakes etc. I won’t touch any of that this time and I am constantly hungry as a result. I try to eat quite a lot of fruits and veggies, but they just don’t keep me full.

It’s all good. It will be worth it when my levels are perfect but I haven’t put any weight on like I did the last couple of times! :)

A PKU bread recipe that works okay with Loprofin

PKU bread using Loprofin - if Loprofin bread usually turns out with this texture then I've never mastered it! :)

This recipe is out of an American PKU cookbook called Apples to Zuchinnis and it’s the first recipe I’ve tried out of it (though I’ve tweaked it ever so slightly). the original recipe says this bread works better if you use Wel-plan instead of Loprofin, but I tried it with Loprofin and it doesn’t come out too badly. I found it had a better texture than the standard Loprofin bread I have made in the past (less holey, more soft) and it had a bit more flavour too.  Then again, I’m the first to admit I’ve never mastered Loprofin bread, and I find it quite disgusting (possibly as a result of that) :) The treacle isn’t essential to the recipe though it greatly improves the colour of the bread and I think it adds a little richness to the flavour as well. This bread is delicious warm or as a sandwich.


1 cup (110g) Loprofin baking mix (though Wel-plan works better)
1 ¾ (190g) cups wheat starch (you can buy this at asian grocery stores)
3 tbsp Metamucil
2 tbsp Powdered Milupa
1 ½ tsp active dried yeast (I measured from one of the sachets that came with my loprofin)
2 tbsp sugar
¾ tsp salt (iodised salt works fine and is great to use if you’re on the preconception diet or pregnant)
1 ¼ cups (290g) tepid water
½ tsp of black treacle (you can also use molasses)

Method (breadmaker)
1. Add dry ingredients into your bread machine pan in the order listed. Mix well.
2. Mix together water and treacle in a measuring jug. Add to the pan all at once.
3. Close machine lid and turn on using the gluten free setting if your machine has one, or if not try basic white (though not sure how that would turn out – I’m guessing okay).
4. Keep a close eye on the mixture while it is mixing. You might find you need to add just a tiny bit more water to make sure all the flour is mixed up in the dough. You may also want to scrape the sides with a rubber spatula. Make sure once you’re satisfied everything is mixing in well you don’t open the machine until it is completely finished, especially once the bread has started the rising phase.
5. Once the bread is done, turn out onto a cooling rack. Leave to cool for at least an hour or the bread will tear when you try to cut it.

Method (by hand)

If you are going to bake this bread by hand its very important you make a few modifications to the basic ingredients.
* Decrease the amount of water by 2 tablespoons
* Add an extra ½ tsp of yeast.

  1. In a small bowl, stir together the yeast, 1tsp of the sugar and ½ cup of the water. Let the mixture sit for 5 minutes – a thick foam will form on top. If it doesn’t, the yeast is old or the water is too hot and you will need to start over.
  2. In a large bowl, combine all dry ingredients (including any remaining sugar) and stir to mix. Once the yeast is proofed (ie – has formed a foam) add it to the dry ingredients along with the remainder of the warm water and stir to mix. The dough will be sticky and have a rough texture.
  3. Cover the bowl tightly in plastic wrap. Place the dough in a warm spot for 30 minutes to let it rise. You can let your bread rise in the oven by turning your oven on at 50 degrees C for one to two minutes and then turning it off. Place the covered bowl in the oven and close the door. While the bread is rising, grease a bread pan with butter. After 30 minutes of rising the dough will have increased in bulk and the top of the dough will still have a rough texture.
  4. Turn the dough out of the bowl onto a flour dusted work surface. The interior of the dough will have a sponge-like texture. Dust the dough lightly with wheat starch or baking mix and knead for 3 minutes – the dough should feel smooth, elastic and slightly tacky. Near the end of the kneading, form the dough into a shape that fits nicely into the bread pan. Make sure the dough is smooth and doesn’t have creases in its surface because the creases will remain during the second rising and will result in an odd looking and shaped loaf.
  5. Place the dough into the greased pan, cover it with a clean kitchen towel and put it in the oven to rise for 30 to 40 minutes. If the oven has lost its warmth from the first rising, repeat the above procedure.
  6. Check the dough – after 30 minutes it should have just risen slightly over the top edge of the pan. If it has, remove it from the oven, place the top oven shelf into the middle position and heat the oven to 190 degrees C. If the bread hasn’t risen quite enough, let it rise for another 10 minutes. Once the oven has reached 190 degrees, remove the towel and place the bread pan into the centre rack of the oven.
  7. Bake the bread for 15 minutes. To enhance browning, remove the loaf from the oven and brush it with 1 – 2 tbsp of melted butter. Return it to the oven and continue baking for about 20 minutes (you can omit the butter if you prefer though the loaf won’t brown as well). A fully baked loaf of bread will have a firm crust and sound hollow when lightly tapped.
  8. Once the bread is baked, remove it from the oven and gently shake the loaf out of the pan. Place onto a cooling rack for at least an hour before cutting – if the bread is too warm it will not cut well and may tear.

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