Trying to lead the best diet we can

Hi everyone,

how do you get along with the diet? Is it always easy for you to stick to the “allowed” and low protein foods? For me, since I’ve tried out almost every kind of normal food (which I do regret at times, I guess it’s less likely to long for something its taste you don’t know 😀 ) it’s pretty hard. I’m always trying to fight against longings and BE RESONABLE.

First of all it’s important to be aware or get aware of your main problems.

When I am extremly hungry and I go shopping, I make unwise decisions. Also
when I am at home and too hungry, I use to eat while cooking the meal (or even before), usually out of the refrigerator. Also a difficult situation
is more likely to appear when it’s the end of the week and shopping needs to be made. Just had this problem yesterday. Since had no fruits at home, I grabbed a slice of normal bread from my fiancés supplies. I simply didn’t think properly about this action. I could have eaten a slice of PKU bread instead since there was still enough there plus I really like the taste of this bread.

Then it’s all about finding solutions which work for you.

I know we shall be dieting for life. Which is good and I don’t put that in question at all, since I know that it is necessary to keep healthy and sane. But it might not be the best phrase to convince you in a difficult moment to grab something with low protein. Do you agree with that? It might even demoralize and lead to worse failures. I’m trying to tell myself that I take it step by step. It’s not the slice of normal bread or the glass of milk or the chocolate bar or even pasta or a meal with meat from time to
time which threatens the diet or your health, it’s the sum of them alltogether which makes it dangerous. So I am a big fan of allowing myself exceptions every now and then. I also use to calculate normal bread into my diet plan when I’m longing for it. I just need to be conscious of what I am eating exactly and how much phe it contains and then enjoy it as well, not eating something out of the refrigerator. I’m working on that.

What are your main problems with the diet? Are you doing well? What are your ideas of outthinking yourself during difficult situations?

In the end we really have to be proud of every step we’re making. Most (healthy) people don’t even have a little clue on how difficult it is to be restricted in food matters and they don’t even think about how blessed they are to be able to eat without thinking about any consequences because for them there are none (except for a possible overweight when eating to much 😀 ) But on the other hand, we are blessed too, we should not forget about this. We have the possibility to follow the diet, we have good medical guidance, we have special foods which makes a lot easier. A lot of people in the past hadn’t. So we should all make the best out of it.

I’m really excited about your thoughts and tips.

Katie xxx


6 thoughts on “Trying to lead the best diet we can

  1. Kay Emerson says:

    I returned to the diet during the 1990’s and I was a little like that . I chose higher protein food choices, as the clinic in Milwaukee likes to put it . But I will like to point out from a PKU er who is now 55 and suffering from those choices ,it is not a choice I will ever make again. It is for that reason , I am Psycologyly unable eat any high protiein foods again . This can be a double edged sword if my levels get low. So I fight just as hard to keep my levels at a happy medium as some adults do to keep them low. So the next time you are hungry stop and make yourself some formula . I know you may not want to hear this, but ultimately your brain and body will be happier in the end. Because I ate shrimp and steak when I Was on the diet I later had increased memory loss and neurological problems . Now that am back on the diet these have disappeared . If my levels are off they reappear quicky. But I am true to the diet and happier because of it. You aren’t any different then anyone else. So you shouldn’t beat yourself up about it . We all slip. It is Normal it is a hard diet to follow. I just want people to know what happened to me.

  2. laura says:

    I’m so glad that’s it’s not just me that finds this hard or difficult and when I contemplate ‘Diet for Life’ it can sometimes get me down but I totally agree with all that you’ve said. I don’t always make the best food choices but I’m trying to rectify that. I have always taken my formula but I find after a really stressful day at work(I have a really demanding job as a financial analyst) sometimes I am so hungry when I get home that the food choices are not always the best. I’m trying to just get back into the swing of it and trying hard to eat every 3 hours to avoid the bad choices. Here’s hoping it works 🙂

    • pkugirl says:

      Hey Laura,

      yep, it’s so great to hear that other PKUs actually do have the same problems… What are the favourite “fast foods” after work?

      And all the best for YOUR diet!

      Katie xxx

  3. Mackenzie says:

    It is nice to hear about someone who has a similar situation to me. I have recently met PKU people in my area but they both have been on diet forever. Which is great. But They cannot relate to me on the same aspect of being off diet and having real food. I was off diet since 9 and I am 26 years old . Since I was 24 I have been doing our diet in steps just like you. Because the big transition is very hard. At first I had a hard time with the fact that I always wanted real cheese and real bread cause lord knows they don’t have that stuff in our world . Then I had spoke to people and I use Molly Mc butter cheese which is a powder cheese and its yummy and very low in phe. And I use Lo pro bread and toast it and try and order yummiest breads like cambrooke or PKU perspectives 🙂 I haven’t had real bread or cheese in about 4 months . I did this because I found an option that works and cause everytime I think of eating regular bread or cheese I think of how horrible it makes me feel afterwards. I usually have a massive headache and can’t even think right and very short fused and moody and tired and its very scary and not fun. It is not my personality at all. I was never a big meat eater when I was off diet so that wasn’t very hard to give up. Then I had a hard time with measuring cause its a pain when you Are starving like you said you just want to grab something that will fill you up that’s yummy but lately I been grabbing something I can have and not measuring it and guessing what the phe might be . Which is so much better for us. Then I was having a problem with being bored with foods and so I came upon oil for love website and wow! Her recipes are incredible! They all taste so much like real food. I always say if non PKUers won’t eat it why would we? Right ? I have not found one of her recipes that I do not like. I try and make one of her recipes a week in my busy life and store it for later use. Which helps so much. It gives me variety and I M actually excited to eat and make things. Then there’s always the cost of these things, which was a challenge . I have support where someone in my area has been sharing foods with me . Which I am very grateful for. I am now in the process of getting insurance in which I have been denied so I am trying to get NBS to help me. So that I can get coverage or apply to for foods. Then I had an issue with formula which my made me sick so then I had to find new in which another PKUer offered hers to try and I loved it. Vitaflo orange flavor . But now I’m surviving on samples til my next appointment in which NBS us going to help me to get to the clinic to get them to help cover formula til insurance works out for me. It has been a stressful emotional frustrating road. Slowly getting it together. Thank goodness. I have my appt on jan 22 so we will see what happens. My issue now is. That I am following my diet but I am very active and sometimes after all my phe is gone and I drink my formula I’m still hungry in which leads me to eat more. So sometimes I am ok if I drink formula with my meal and it makes me full longer . That helps. But sometimes my schedule won’t work that I can do that and which leads me to just eat lo pro snacks in Which takes up phe and I’m still hungry when I drink my formula with that. It’s still a challenge I am working on. Also one more challenge I have is that I just want to guess the phe i eat and that never works out cause I always eat too much phe and I feel horrible. I think people who have been diet for life can do that cause they are use to it. Where with us we are tempted to just have a higher phe snack cause we know the taste and that adds up real fast and makes us feel horrible in the end . I appreciate this support a lot !! Thank you !! Wish you luck and would love all the advice I can get and wonder where you Are in your diet path and wonder if we can help each other out. I’d be so grateful.

    Thank you
    Mackenzie Guiliano – Lewisville, Texas- 26

    • pkugirl says:

      Dear Mackenzie,

      thank you for sharing your story with us and thank you for the kind words!

      I’m actually doing good, I’m back to a strict diet since August now, I had days, where I had a little more than I should but it was never really off track, so my last level was 3,0 mg / dl, which is fantastic 🙂 Of course we can share our daily experience and help each other out – just drop me a line 🙂 k_babygirl2204(at)

      Katie xxx

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