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

#7535
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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.

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