Community Discussion Forum New to pku and have an eating disorder can any1 help

Viewing 5 posts - 1 through 5 (of 5 total)
  • Author
  • #7120
    Avatar of marion

    hi i’m 27 and have had porblem with food for a number of years now i went off the diet for 7 years and put a lot of weight on went back on the diet about 2 years ago and i lost a lot of weight now it gone to far i’ve lied to my dietien and friends, family i was wondering if there is any1 out there with pku who has been thourgh this that could help or give me some advice.

    Avatar of

    could you be a bit more specific? how much weight are you talking about now? what is your BMI? – are you conciously refusing to eat? I lost a lot of weight at one point when I was off diet.and not in a good way.
    maybe I can help.

    Avatar of Tracie

    Hi Marion, nMy name is Tracie,and i am a recovering Anorexic for 4 yrs but suffered for 10 yrs.
    I am PKU just like you. nMay i ask what your weight is?
    I know that is something we (Anorexics don’t speak about)
    I am very open about my PKU and Anorexia. nDo you Starve yourself or make yourself Vommit? nPlease let me know if i am over stepping my boundries.
    At 1 time i was 180lbs,and now i weigh about 102lbs.
    I have been hospitalized one time and refuse to relapse. nPlease let me tell you it is very hard to gain weight when you go under 100lbs.
    What type of PKU do you have?
    I am Borderline-PKU.
    I am allowed 60 grams of protien a day.(2700 PHE’s)
    I will do a friend req. if you want to talk.
    I struggle day to day with it,and its not easy
    when people say (just eat).
    Take care,and i am here for you.

    Avatar of Rebecca

    Hi. I have pku and was treated for eating disorders in my 20’s. One thing I would suggest is for you to seek treatment for your eating disorder, if you aren’t already, and make sure those treating you know about your pku. Another approach would be to go to a PKU specialist or clinic and let them guide you towards treatment for your eating disorder. I’m in somewhat of a similar situation now. Instead of an eating disorder, I have recently been diagnosed with coronary heart disase. That requires a significant lifestyle change including special diet, exercise and medication. I’m not currently on the PKU diet though. I’m 46 yrs old-will be 47 in a couple of months.

    Avatar of Tracie

    Hi PKUSince62,
    I am assuming are you first generation?
    I will be 40 in July.I too am PKU and am a recovering Anorexic. nWhat was you PKU to do for you?
    I live in an area where there is no possible team of Drs i can get together for my Anorexia. nPlus i need one on one councling.
    If you have any advice please if you are comfortable share it with me.
    I actually councle a group of young women and men on Anorexia daily. nThere a great support for me,but it is all done online.Personelly i need face to face.
    Let me know what you think. nHey Thanks for sharing. nAlso who is your PKU DR.? nMine is Dr. Koch in Los Angeles.(Familar with him?)
    Take care, nTracie-PKU

Viewing 5 posts - 1 through 5 (of 5 total)
Quick Poll
Which of the following best describes you?
Parent/caregiver of an infant with PKU
Parent/caregiver of a child with PKU
Teenager with PKU
Adult with PKU
Grandparent of a child with PKU
Know someone with PKU
Healthcare professional