Returning to the PKU Diet—Easy Does It!

Going from a completely liberated diet to one that consists of limited protein intake can be rather intimidating when you look at it from a 25,000-foot view. However, breaking-up the task in small chunks and tackling the goal with baby steps can make all the difference between success and failure.

That’s the approach I’m taking after recently deciding to give the low-protein diet a try. I first started this effort last week by committing to taking my formula four times a day. I didn’t worry about altering my diet any; just made sure that I had 60 grams of protein via formula and see how that goes.

Use the RxmindMe app to set reminders on your phone to take your formula.

Use the RxmindMe app to set reminders on your phone to take your formula.

For me, getting all the formula in was not a problem. I would take one with breakfast, the second at 10 a.m., a third near the end of the workday before heading to the gym, and the final before heading to bed. I even set reminders on my phone using RxmindMe and on my Outlook Calendar just in case I got caught-up with work and forgot to take a break for drinking my formula.

After about the third day of doing this, I started to get really strong headaches, especially right after waking up in the morning. At first, I attributed them to stress at work, but when they persisted even on into the weekend, I figured there might be something else at play. Eventually, I concluded that by not altering my diet, but still consuming 60 grams of protein through formula, I was in essence consuming twice as much protein as a non-PKU person would normally eat.

First time making Cook for Love's low-protein bread! The 2nd loaf (on the right) definitely came out better.

First time making Cook for Love’s low-protein bread! The 2nd loaf (on the right) definitely came out better.

The next step in my goal of returning to the low-protein diet was to cut-out all meat. Given the persistent headaches though, I decided to ramp-up my progress. I decided to try my hand at making Cook for Love’s sandwich bread—in fact, I made two loaves and have frozen the second for eating later. I also started incorporating a few low-protein modified foods such as Aproten pasta and Cambrooke’s rice. That being said, I went from eating 60-90 grams of protein to just 15 grams as of yesterday. And the best part? No headaches when I woke this morning!

I realize the real trick will be to continue this progress in the long term, but again, to keep from getting overwhelmed, you have to take it one day at a time. Today, I am going to work on building out my menu for the entire week. I’ll pick out some new recipes, search some free foods through Virginia Schuett’s Low Protein Food List and go from there. As I try new things or find tips to share, I’ll regularly post those here. Of course, if you have any to share, please feel free to do so in the comments section below.



Filed under Formula, Lo-pro Diet Management

14 responses to “Returning to the PKU Diet—Easy Does It!

  1. Mandy

    Don’t forget to mention that the bread was tested and approved by some real bread connoisseurs!

  2. Amy Brogliatto

    I also went from a completely liberal diet to a PKU diet about six months ago….thank goodness for the cook for love website! Keep up the great work 🙂

  3. This is awesome! I’ve actually never been off diet, so when people ask me for advice on getting back on I don’t really know what to say. So now I will be sharing this with them! : )

    • Hi Elisa! Pleased to *meet* you – online that is! 🙂
      I’m so glad you decided to comment because I wasn’t aware of your blog and I’m always looking for other PKU bloggers. Please stop by often and definitely share PKU Parlor with others if you think it is helpful.


  4. Pingback: Planning a PKU Menu | PKU Parlor

  5. Emma

    Haha I was just looking for some recipes for my boyfriend (who has PKU) when I came across your blog! He has always been on the diet so I didn’t even know that there were people with PKU who aren’t on the diet! Good luck getting back on the wagon (the pku diet wagon that is) and if you’re ever feeling like you are going to fall off, check out the Cambrooke website, they have lots of meat alternatives that my boyfriend loves.

  6. Hi! I´ve just recently started my third attempt to get back on the diet since I went off it at about 17 (I´m now 41). I was just curious to know from you what effects you felt from being back on diet after 6 months….I´ve read about the mysterious “feeling better” effects…but am really curious to talk to people about the specifics of what they notice. I think it will really help motivate me for the transition. Plus, thanks for all the helpful hints about breaking it down into “one day at a time” :).

    • Hi Sylvia! Good to hear from you…apologies for the delay in responding to your comment. I thankfully didn’t experience severe symptoms from being off-diet so when I returned six months ago, I did not feel like a fog had been lifted, although I’ve heard of several others who did. Nonetheless, I have noticed that I sleep better and feel more well-rested in the morning. I also dropped about 10 lbs after returning to the diet, probably because I had to measure, weigh and write down everything I was eating.

      How long have you been back-on diet this time around? You’ll have to let me know if you start to feel better or have any other symptoms.

      Be sure to stop by often! I’m sure you’ll have plenty to add to the conversation. 🙂


  7. Pingback: Calories – Why you’re not just counting phe during maternal PKU | PKU Parlor

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