Community Discussion Forum Adults and PKU Off the diet Reply To: Off the diet

Avatar of Giulio

hey everyone…
im new to this site… and my name is Giulio, 24, and have MPKU. I live in Montreal, Quebec (Canada) and have beed off the diet for quite some time now. I am contemplating restarting but my only concern is the lack of knowldgeable physicians or dietians to help me monitor this with me – this is quite annoying. The ones that are informed of this disease are the located in kids hospitals (care for children) So what this means is that if you are 18 year old your stuck finding yourself your own doctor.
Not to too long ago they (the childrens Hospital) called me and some other PKU carriers back in to see if we were interested in getting back on the diet. The only problem was that it needed to be a rigurous, monitored diet- one which invloved me to travel to the down town area every 2 weeks to get tested- not forgetting- having to drink those horrendous powder/watered shakes! I decided to attend but then never went back simply due to a very busy scedule that didnt allow me to take off work to visit the hospital every other week!
I am in the best shape (semi-pro soccer player, soccer coach) I’ve ever been and it’s partly thanks to the first 16-17 years or so of being on the diet. I work with a company Called Matrox, which is a leading, innovative graphic/video/imaging hardware/software comopany. It’s been 6-7 years now i have been off the diet and it was reccomended that I stay on the diet… although I’d really like too, it’s quite difficult at times… If i continue off the diet? does anyone know if anything or what can happen?
Here in Canada we are a bit more fortunate that all the food or low in protein products from the CLSC or (Also Known As: clinic food bank) is all paid by the government (or most of it if im not mistaken) Maybe I should get back on the formula, even though I despise the taste of the mix (powder+water)… Should I?
Thanks for listening… nGiulio

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