August 19, 2008

PKU and the 3 R’s

By Paul T.

I remember when I first started seeing my dietitian on my return to the diet, sounds a bit like a movie title! PKU and the return of the Diet!! She explained to me that to help maintain consistently low blood Phe levels, management will involve a three-pronged approach known as the 3 R’s: Record, Restrict, and Replace. I must Record the amount of Phe I consume, Restrict my diet to the right amount of low-Phe foods, and replace those higher-Phe foods with low-Phe alternatives, such as Phe-free protein supplements like Lophlex and Add-ins. I know this type of management is not a cure, but it has been effective in helping to prevent many of the symptoms of PKU in myself such as the drowsiness and bad temper. So remember the 3 R’s: Record, Restrict, and Replace.

Record

You should work to keep track of how much Phe you consume every day. A registered dietitian should be consulted and can give you a daily number of exchanges (In the UK, one exchange = 50mg of Phe, but this varies from country to country. In the US, one exchange = 15mg of Phe and in Germany they count every mg!! Now that’s dedication!!). This number gives you your Phe tolerance. Everything you eat in a day should be counted toward the number of allowable exchanges. So the best thing I’ve found is to keep a food diary of everything I’ve eaten so I know how much Phe I’ve consumed.

Restrict

I soon realised that there are so many foods that have too much Phe to be included in my diet, including meat, eggs, and dairy. Because of their high Phe content, they must be avoided entirely. There are a variety of substitute foods, the recipe section on this site has quite a lot of good ideas for cooking when on the low-pro diet:

http://www.shs-nutrition.com/lowproteinliving/recipes/

Replace

I was told that protein is an essential part of my diet, even though too much can harm me, I must consume some protein. Therefore, an absolutely essential part of my PKU diet are special low-Phe or Phe-free protein supplements. I’ve found the effects, convenience, and most importantly, taste, vary wildly from product to product and company to company but I’ve found a diet I’m happy with and adherence isn’t thie issue it was only 5 years ago, never mind ten years ago.

So that’s my little tutorial, back to my day job (unfortunatley) and good luck to anyone out there on following and the diet..and just remeber your 3 R’s!!

Topics: Diet Tips, General Nutrition, Thoughts on PKU |