LowproteinLIVING

hi i am 23 years old and have been off diet since i was proabably about 16, i want to get back on diet but i need help anybody have any ideas what would be the easyiest way to get back on diet?  also what formula is the best out there now i used to drink pku3 and that was disgusting i hated drinking it.  and one more thing where can i buy the low protein food at, and recipe books for low protein food?  your help would be much appreciated.

Hi Angie,
Your local doctor should perhaps be able to help. Wishing you the best of luck with getting back on the diet anyway.
Mazza.

Hi Angie,
I am 25 and just started to get back to my deit, like you I stopped at about 16. The first thing I did was get hold of my dietitian, then in feb I went to the annual conference in Northampton, which really hit home how important the diet is. Once I saw my dietitian it really started the ball rolling as now, I am fully on my suppliments and doing blood test every month along with seeing my dietitian. I really reconmend you get hold of your dietian, as I now feel so much better now I am back on the diet.
Hope this helps

Jen

Hi Angie

I’m 25 and also came of the diet at about 16. I’ve been on and off the diet for about the past two years, and now am making a renewed effort as I’m booked in to start on the preconception diet in October!

I often find that having someone to talk to about the diet really helps - someone who knows what its like rather than doctors or family. If you like, I’m happy to keep in touch and talk about stuff with you, almost like a diet buddy!

The first thing I did when i wanted to go back on diet was go to my doctor and get a referral to the PKU clinic in London (depending on where you are based of course!). I went to the PKU clinic and met my doctor and dietician, then not long after I had another day at hospital in the metabolic kitchen with one of the dieticians. I found that really useful - they stock a full range of low protein products so I got to try out everything, including formulas. From there we made a list of what I liked and what I didn’t like, and used that as the basis for my prescription list. I also tried formulas, which is a big deal to me because i HATE formula, doesn’t matter what it is. However, I found one I can stomach without gagging (which was a first for me), so I’m now on Lophlex LQ orange - its a pre-made drink that comes in a foil pouch. You just need to get it out of the fridge, shake and then drink. Its not too bad - I used to be on Aminogran as a child and it would make me throw up, but this stuff isn’t too bad as formulas go. On the kitchen day I also had the opportunity to learn some basic low protein recipes, including a lasagna, basic white sauce and bread.

I was quite shocked to find that the low protein products have come a long way since I was last on diet and I could get microwave packet pastas, baking mixes that make bread that actually looks and tastes good and all sorts of other things.

I’m still not very good at doing my blood tests - because i’m ‘pre’ preconception I’m meant to be doing tests once every two weeks. I haven’t managed one yet though

Seriously, get booked in and go to a PKU clinic… it was nowhere near as bad as I thought it was, and after a week on diet my levels were the lowest they’d ever been. If you want to be ‘diet buddies’ let me know!

Kate