PKU.com Community Discussion Forum That’s PKU life! can you go off the diet..

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  • #5890

    Is going off the diet like a chance that you can take? And if it works, then you could stay off, and if it doesn’t then you should go back on? Because through what I’m reading through all of these posts it seems as if we have a choice or something. I’m just confused. Would someone explain?

    #5895
    Avatar of Breanna
    BreaMarie91
    Member

    Taylorgabriella,
    The simple answer to this is no. We are not ever supposed to go off our diet. No matter how old we are too much phe can still build up in our blood stream and cause alot of problems like headaches, stomaches, tremors, shakes, vomitting, lower IQ, siezures etc. nSome people went off their diet when they were younger because years ago doctors believed that it was okay. They’re finding now that adults who went off as children or who are going off as adults are suffering because of this. If you did go off your diet I guess there would be nothing doctors can techniqually do, but still you should not do it, it’s just not worth your health and brain cells. So no, the motto’s is ‘Diet for life’. nHope this answers your question. nBreanna n16 w/CPKU

    #7183
    Avatar of Sarah
    oldkpugirl
    Member

    Hi I am 40 and have PKU. It was thought back when I was 7 that the brain had fully developed and that going off the diet was okay. They didn’t realize the damaging effects it would have on me. I was off the diet for over 30 years and have gone back on the diet. I see a big difference in my life and my abilities. I didn’t go back on my diet until I realized that I was having problems multi tasking as well as patience, and remembering. It was like I was living life in a fog. But since I got back onto my diet and controlled my phe levels. I have been out of my fog and normal again. So my suggestion is to not go off your diet. It doesn’t do you any good and I am living proof of that.

    #7523
    Avatar of Tracie
    Tracie_PKU
    Member

    I would not reccommend going off diet at all. nMy parents took me off diet and needless to say today i have alot more health problems. nPKU siezures,Aniexty,joint problems?
    Its just not worth it.

    #7535
    Avatar of Nick
    arkham
    Member

    Going off the diet is a chance you can take…but it’s a really bad idea. As has been said, back in the 70s, doctors believed that it was ok to take PKUers off the diet at a young age. I was taken off at age 3, as I have a milder form of PKU. However, in the 80s, they found out that many kids who were off-diet started having serious problems. Fortunately for me, I didn’t. I didn’t have any problems even by the time I went back on the diet a few years ago (I’m now 35), but have gone back on the diet because we still don’t know everything about how high phe levels will affect us as we age. Also, apparently people with vPKU like me often start having problems after 20-30 years off-diet…seeing as I was off for about 30 years, I’m not willing to take the risk of being off-diet anymore.

    #7551
    Avatar of Tracie
    Tracie_PKU
    Member

    Smart move Arkham,
    I am 39 and just went back on diet about 2 months ago.
    Its hard, but in the long run like you said
    they (DRs) have no idea what will happen to us.
    I was taken off diet when i was about 9 yrs old.
    I only went back on to have my daughter 10 yrs ago.
    Needless to say not a smart move on my part.
    I do have other health issues,but iam determined to try to live a healthier life.
    Take Care, nTracie nBorderline PKU.

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