Avatar of Heath


January 28, 2011 in Uncategorized

Ok so my name is Heath and I just started this last night still not sure how it all works but I need help. So I am 25 and I know that I have pku but I have not ever done any type of diet for my pku since I was about 14yrs and I know that I should be on a diet that goes hand and hand with how I should be eating when I was younger I remember eating weird things but nothing like the things on this site. I work at a now gym and i have been trying to gain weight I am currently 175lbs and I want to get to 210lbs but the only problem with that is protien is the main thing you need to get big. so I was making a diet for myself and realised that its all egg chicken and broccolli, which isnt going to work for me. I dont even know what I can eat and can eat or where to find what I need. I have read a few of the blogs on here and they all talk about the formula, I remember the formula for way back when and I remember it being the wosrt tasting thing I have ever had but I know I need to fix this I dont want to hurt myself in the long run, I feel as though I will if I keep up the same thing im doing. If anyone has any advice, tips, food list, what happens if I dont stop it would be greatly appreciated. thanks to anyone that can help. alt


  1. Registered: Oct 31, 2006

    Posts: 0

    Taylor, Michigan

    well i am 22 and i have been a pku patient for all my life i have never been off my diet but i pretty much eat anything that i want . but i don’t touch meat at all no cheese on a regular basis i eat things that i am not supposed to but i don’t over do it i just do it for a diffrent taste . But i have just found out not that long ago that here are other things that they have out now that are made with veggitables . Hotdogs, hamburgers , corn dogs , chicken nuggets they all have a little bit of protien in them so you can’t over do them but it is a good and they are coming out with more every day

  2. Registered: Feb 17, 2011

    Posts: 0

    covington, Georgia

    The formula is the worst thing you are right! But there are ways to make it more tolerable.You can mix your favorite kool aid with sugar or you can use tang there are so many ways around it! It makes it drinkable without throwing it back up and formula will put weight on you fast! I am twelve weeks pregnant and already showing because of the formula I used to mix it with kool aid and sugar to be able to drink it now I take it without anything because I got used to it. I will admit pku is a NIGHTMARE to have to go through and I hate it but I was told this diet is very important to be on regardless I dont judge anyone with pku off the diet because it s so hard and I know as soon as I have my baby it s goodbye diet hello mcdonald s. I will probably be on this diet after my baby but not so strict.But try to find a pku specalist in your area and he or she can help you reach your goals the best and safe way for you! I hope this helps good luck!

  3. Registered: Dec 12, 2009

    Posts: 0

    Pitman, New Jersey

    my name is victoria and i am 22 years old…i have always struggled with my diet but being off of it gives me alot of health problems…but you need to find a pku doctor and go get checked out to see what kind of diet you should be following and yes the milk is very nasty but they have improved it over the years and you might be able to find one that you like the best thing to do…is STAY AWAY FROM ANY MEAT…that is the biggest thing with protein that we are not suppose to eat ….once you find a pku doctor they will be the most help

  4. Registered: Feb 24, 2011

    Posts: 0

    Yonkers, New York

    Heath — I’m a mother of a three year old with PKU who we adopted from Russia. The first thing we did was find a major hospital that has a Genetics Department. If you live in or around NY Mt. Sinai is terrific as is Westchester Medical Center in Valhalla, NY. If you want to tell me where you live (just your state) I can help you find an appropriate doctor and nutritionist. They will test your PHE tolerance and tell you how many grams of protein/PHE you can tolerate each day. They will also give you samples of formula to try. My son drinks PhenylAde Essential mixed in 8 oz. of coconut milk and dairy-free chocolate powder — and he loves it! He actually asks for it.

    The nutritionist on the hospital staff will craft a diet for you. With regard to weight gain, I think it’s fairly typical for people who are not on the diet to lose a substantial amount of weight. But for right now have a doctor determine the amount of protein your body can tolerate and go from there.

    There’s hope.

  5. Registered: Jul 1, 2011

    Posts: 0

    sheridan, Indiana

    My name is Katrina. I also agree that you need to find a doctor in you area. I also know they make candy bars that are low protein . It’s pku chocolate it’s not bad between meals. You should ask your doctor what your best options are. The high protein foods do effect you some people may not think they do but they do. They effect your eye hand coordination, your memory ,focus, comprehension,attention, your energy levels,the way your brain functions and processes info. you feel like you can’t clearly think . It is easy to overlead your brain with too much info at one time. I know what I’m talking about I’m pku and I’ve experienced all these things when I’m off diet.

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