Hi everyone, I'm Kevin, 25 years old, from Canada. Like you all, I was diagnosed with PKU when I was just two weeks old. Growing up, I was on the low-phe diet, including all the specialty foods, and formulas, but at the age of 14-15 I simply wasn't growing. We stopped going to Sick Kids Hospital for my regular checkups, came off the diet, and haven't been on it since.
That's not to say, I've gone nuts on things I know are particularly bad for me, but I haven't been nearly as regimented as the hospital told me I should've been.
I've read numerous posts on here since I found the site a few days ago, citing complications that people here have had within weeks or months of coming off their diet, but for me, I can't honestly say I haven't experienced any of the symptoms, with the exception of maybe weight gain, but that's limited to the last few years, so I'll wager that's just generally poor eating habits since I finished college.
I find it puzzling that some people here have had such trouble coming off their diet, but for me, it's been actually much the opposite. I grew substantially between the ages of 15 and 16, while I had been stuck at 4'10 for as long as I could remember, and there was a marked improvement in my grades. I finished high school with honours, and graduated top of my class in college.
I know everyone's body is different, but does this not seem like unsual findings to you?
In either case, I've chosen to try and get my diet still back to closer to the low-phe diet I used to be on, because I'm still not interested in pushing my luck with overly high blood-phe levels, and at the same time, I wouldn't mind losing a bit of the weight I've put on of late.