Tips for Returning to a Low-Phe Diet

    Don't look at your low-Phe diet as a burden. Look at it as another opportunity to help learn important life skills.

    John, adult with PKU

    Returning to a Low-Phe Diet can be challenging, but there are people here to help you every step of the way.  Your first step is to find a clinic near you and surround yourself with people to support you.  

    Set a goal date for transitioning from getting all your protein from your diet to getting your protein from prescribed medical formula and your low-Phe diet. The key: do it slowly

    Tell you family and friends!  It is important to have support from family and friends as you make this transition.  When returning to a low-Phe diet it is important to visit a PKU clinic.  They can help you set and then reach your PKU goals.  They can monitor the amount of Phe in your blood to find your Phe tolerance, help you find the best medical food for your needs and provide guidance.  Your PKU team is the best resources as you return to the low-Phe diet and they will help you work out a treatment plan that works for you.

    The main treatment for PKU is a diet that consists of a medical formula.  Protein is a necessary part of everyone's diet -- people with PKU just get their protein from a difference source. The good news is that medical foods and formulas have improved since you last took them!  Ask your clinic about new alternatives that are available, such as glycomacropeptide (GMP) foods.    

    It's important that you drink the amount of medical formula that is prescribed for you every day.  Click here (link to pdf) to tips on how to make sure you are getting enough medical formula.

      You will also need to eat low protein foods.  In addition to having foods that have been modified to be low in protein (medical foods), you can click here for a list of some less expensive low-protein foods that can be found at your grocery store.

      If you need a step by step example of a menu to help get you back on a low-Phe diet download a copy of the 5 Steps to the PKU Diet.

      Many people who have been off diet say that when they returned to the PKU low-Phe diet that they felt better, found it easier to get along with others, had more energy and could concentrate better.