PKU – Phenylketonuria

PKU is an inborn error of metabolism that results in decreased metabolism of the amino acid phenylalanine. 
I was born with that metabolic disorder and it has been a huge part of my life ever since. When I was a child every little bit i was eating had to be measured, protocolled and strictly controlled by doctors and everyone around me. To "save" some protein units and to get saturated i have extra low Proteine products, such as pasta, bread, milk and rice. Furthermore i am taking amino acid supplements that provide me with all the nutrients i am missing due to a limited consumption of protein rich products.
My parents and my Grandma did an excellent job taking care of me and explaining me why i was different to others and why I wasn't allowed to eat the food they were having.  When i went to a friends birthday party i was the only one not being allowed to eat any cake or gummy bears. But i never felt that i was missing something troughout my childhood and i grew up just like any other kid.
For me the most exciting moment every day was when we calculated at night how much protein i had eaten already and how much was left to have something special like potato chips or some tiny peace of chocolate.
I always celebrated the food i had and still do! I love to create special recipes on my bread or pasta sauce, combining all sorts of different low protein ingredients together. For instance low pro bread (from my grandma) with butter, tomato paste, small cut little pickles, peppercress, and black pepper!
i (still) need to pay heed of how much protein i eat, every day.
Luckily, besides loving the country thailand, i also do love thai and vegetarian food. In October 2017 i became vegan which made it easier for me to take greater care about my PKU diet. IT ONLY GETS COMPLICATED TRYING TO LOSE WEIGHT or TO gain a lot of muscles, because i only have a limited amount of protein each day. 
I would love to know how you are dealing with PKU !?
How was your Childhood and what makes you struggle the most,
or what can you recommend ?

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