Anyone on a low protein PKU diet?

JojoHookway
JojoHookway Posts: 2 Member
in Food and Nutrition
Hi, I have PKU and for this I have to reduce my protein, any fellow PKUers trying to lose weight and have some good low protein recipes?

Replies

  • paperpudding
    paperpudding Posts: 9,230 Member
    I am surprised you are asking this now.

    PKU is a genetic disease diagnosed soon after birth via the Guthrie heel prick test and people with it are on a life long strict diet.

    You wouldn't be 'reducing your protein' now - you would be on a very low protien diet all your life.
  • yirara
    yirara Posts: 9,853 Member
    True, but you don't know how old TO is. When I was born there were NONE of those tests done. In my country they became common in the 90s mostly. Of course with such a condition I'd think that TO is young, but you never know.
  • paperpudding
    paperpudding Posts: 9,230 Member
    yirara - people born before the test was done (since 1966 in Australia, presumably similar in most other countries) who therefore did not reduce protein in their diet since infancy suffer Irreversible brain damage and marked intellectual disability beginning within the first few months of life.

    It isnt a condition an adult just finds out they have later.
  • yirara
    yirara Posts: 9,853 Member
    Ugh, I was thinking of a different condition. Sorry. Back to topic!
  • JojoHookway
    JojoHookway Posts: 2 Member
    Paperpudding, i do not find your comment at all helpful and to be frank slightly patronising! For your information, I was diagnosed at birth and yes was immediately started on a low protein diet. At that time the advice was you came off diet around 14, which I did. It wasnt until much later as an adult the advice changed to a diet for life. I very happily had no issues related to PKU so rightly or wrongly, time will only tell, I chose to stay off diet. Since getting older and with possible cognitive issues in later life, I chose to go back on to diet, and have been very successfully have done so since March. Perhaps wrongly, i reached out on this site for help and advice, not to be judged by the likes of you!!
  • paperpudding
    paperpudding Posts: 9,230 Member
    I dont see how my post was at all judgy, seemed neutral and factual to me.

    if you have other facts, just say so - I am open to that.

    But never mind - if you came back 4 months later just to post that and presumably to flag my post , so be it. :*

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