Viewing 7 posts - 1 through 7 (of 7 total)
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  • #5730
    Avatar of timothy
    Ginsui
    Member

    Hi,
    I feel a little weird about this post since I have read some of the stories that you guys have shared. My mom told me when I was little that I have PKU but it is only marginal. She told me to stay away from certain foods like any thing with aspartame and she also mentioned beer. I always ate any food i wanted…chicken, beef, pork…anything. I never had a diet drink or beer. I am doing fine, I have never had any trouble with my thinking or personality. I currently work for a law enforcement agency and I do Computer Forensics for them. I never put too much thought into it until now. I am beginning to work out now to get ready for the rigorous training program that I will have to follow to become an officer and wanted to get stronger. Thats when my trainer told me to go to GNC and get some protein whey. I was reading the label and it says that it contains Phenylalanine. I am very confused how this or anything that I have avoided all my life will affect me. I know my family doctor will not be able to give me answers that I seek. Does anyone have a similar situation, or know where I need to start to find answers?
    Thanks guys and I am sorry that I seem stupid here.
    Tim

    #5735
    Avatar of karan
    pkukid
    Participant

    Hi, nYou’re probably hyperphe. I’ve noticed that people with milder forms of PKU seem to be able to eat more things that those of us with more severe PKU can’t eat and these foods seem to have little to no effect on them. It just all depends on what kind you have and what your tolerance is for foods that would be taboo for those of us with a more restricted diet. YOU GO BOY!!!!!

    #5744
    Avatar of timothy
    Ginsui
    Member

    Thank you pkukid.
    I did not want to come off as arrogant in my post, so I hope I didn’t. I have read some of the stories and I was shocked. I am very sorry some of the things that many of you have to go through.
    What kind of doctor would I see if I wanted answers, and what kind of tests would they do on me?
    Thank you for your help.

    #5745
    Avatar of Stephanie
    smorff
    Member

    Ginsui,
    Hi my name is smorff and i am a 36 yr old female with classic pku. Just wanted to help u out..
    You can start with a genetics dr. let them know about your youth and you would like to be tested for pku all they do is draw blood send it off takes about a week for results..
    Hope this helps
    nnSmorff

    #5746
    Avatar of Stephanie
    smorff
    Member

    Ginsui,
    Sorry 4got something if not just PKU to be tested for but if it is more mild form of it.
    nsmorff

    #5747
    Avatar of Breanna
    BreaMarie91
    Member

    Ginsui
    I would agree with smorff. You would probably have to find a medical geneticist near your, or a metabolic dietitian or somebody like that. They would most likely run some sort of blood tests on you to see how much Phenylalanine is in your blood stream. And yes, you probably have a very, very mild case of PKU if you don’t have to watch anything. Are you sure you aren’t just a carrier or PKU (somebody who only carries the gene…which would be what parents of PKU’ers are). Don’t worry at all, you did not come off sounding arrogant at all!
    If you had a more serious case like me and my little sister (Erica is 8 and is the other one out of the 7 of us with PKU)do then if you ate things with to much Phenylalanine in it nothing would happen at first. It’s kind of a slow progressing thing, but I know that if I eat to much high protein foods in a day then I do get tired alot easier. Other things that could happen would be things like headaches, lack of concentration, lack of energy, tremors/shakes, faster reflexes then normal and eventually if blood levels aren’t good for along enough time then seizures could accour. nAnd don’t say sorry for the fact that we live with special diets I’ve got PKU and I’m proud of it! Yeah, the lack of variety in food and the frequent blood tests does get annoying at times but whatever, atleast PKU is something that allows me to live a perfectly normal life. There are alot of other worse things like diabetis, down syndrome, cancer ect that us PKU’ers could have! So I count myself lucky that besides what I eat I’m just like my Non-PKU siblings. nBreanna n15 (16 in June!) w/CPKU

    #5757
    Avatar of timothy
    Ginsui
    Member

    Thanks guys! I am going to make an appointment with my family doctor and get a referral. I also got an email back from EAS, a company that makes protein drinks and they say that their product does not contain any Phenylalanine.
    My wife and I are trying to have a baby. I am thinking of having her checked too just to make sure she is not a carrier or something.
    Again, you guys have been a great help, and I will report back to you when I get some information.
    Good luck to all of you!
    Tim

Viewing 7 posts - 1 through 7 (of 7 total)
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