Community Discussion Forum Adults and PKU need advice Reply To: need advice

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Hi Kate,
My name is Alicia and I am in the same boat you are. I am 22 and recently got marrried. We would like to start a family as well as you know I am trying to get back on my diet. I have been off my diet since I was about 10 yrs old. So I didn’t know a lot either. I just saw my doctor a week and a half ago. They will test your levels of protein, vitamins, etc. My nutrtionist told me to cut out meat first. I did that and I kept eating pastas to keep my levels somewhat high because if you get to low with your phes you will starve your body. I got some food ordered. There are special pastas, cheeses, burgers, breads, etc. A good place to look for those foods is Cambrooke Foods. You can search it on the internet and look at all the foods. Also there is Dietary Specialties. Also I was wondering where you live. Some states in the U.S. will cover some of your special foods. It is hard to get your levels down without your formula and special foods. Just make sure you don’t starve your self from protein before you get your foods and formula. With starting my diet (formula and foods) I am eating 600-700mg of phe compared to 2,000-3,000mg phe when I was off my diet. I feel a lot better too I have a lot more energy now. I feel like a millon bucks!!! Oh and just so you know Phe stands for Phenylalanine (which our bodies can’t break down). It is an amino acid in protein. Our bodies don’t produce the enzyme that breaks down the Phe. Just in case you didn’t know. If you have anymore questions don’t be afraid to ask. I will try and help!! I don’t know anyone else that is going through what we are so its nice that we can chat. Send me a message if you would like.
P.S. Sorry this is so long. I hope it helps though.

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