Confused, Going back on diet

Confused, Going back on diet

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Confused, Going back on diet

April 3, 2011 in Uncategorized

So... I'm 22 and haven't really been on my diet since I was a young teen. I guess it took me a while to realize I want to be the best I can. I never really noticed a change in myself so I didn't try. I think that is strange considering I have CLASSIC pku but I suppose I just figured everyone gets depressed, anxious, eczema-like skin, bad memory, can't pay attention. But since I have not been in the game for so long, I have NO idea how many exchanges I'm allowed. I thought when I was young it was around 15 but I tried my absolute hardest the past couple days and still got up to 30 or so and I was hungry all day! I'm waiting to get my blood levels checked and find out but the doctor can't get me in for a while.. I know my Phe levels wil be insanely high probably even from just lack of knowing what I'm doing anymore. Does anyone know how many exchanges an adult can have daily? I would really appreciate it.. This is only Day 3 and I feel like I'm barely eating.

6 Reviews of Confused, Going back on diet

  1. Registered: Feb 26, 2007

    Posts: 0

    Chicago, Illinois

    Hi Lindsey, nice to meet you. The number of exchanges your body is allowed is really based on each person individually, because each person metabolizes differently. You really need to see a doctor to determine. What sorts of foods are you eating? Ordering & eating low protein foods really helps out with the hunger so you can have your versions of breads and pastas, etc. Products have improved greatly in the past ten years.

  2. Registered: Feb 15, 2011

    Posts: 0

    Macomb, Michigan

    I agree with Sarah. It depends on a number of factors. My doctors have told me that I can handle more phe and exchanges because I am training for an elite law enforcement team and i regularly work out and run 4-5 times a week. This exercise in turn increases my metabolism. If you are having trouble controlling your phe levels then I strongly suggest forming a regular workout regiment. When I had my epiphany, like you I am a CLASSIC case, I went from a 22mg/dl to 3.1mg/dl… (all based on 3 day diet records)

  3. Registered: Feb 15, 2011

    Posts: 0

    Macomb, Michigan

    One thing I forgot to mention is to consult with your dietician before starting a workout program. With their help you both can set goals and determine a proper phe level per day (mine is set at 600mg right now), as well as a proper calorie intake per day. With a structured program daily monitoring of your diet is something I also recommend strongly. They have good day-by-day diet record sheets you can print off of this website. Feel free to message me if you have anymore questions, I’ll answer you to the best of my abilities!! =)

  4. Registered: Sep 12, 2006

    Posts: 0

    Franklin, Wisconsin

    I have to agree with what the others have posted. The amount of phe that each person with PKU can have is very individualized. Unfortunately the only way you will be able to determine how much phe you can tolerate is by keeping track of what you are eating and doing blood test. If your phe level comes back high our doctor or dietitian will adjust your phe intake accordingly.

    As for being hungry are you drinking any formula in addition to the low protein diet? The formulas are packed with calories that can often times keep you full so that you won’t need to eat more food to fill up on. If you aren’t drinking a formula yet I would speak to your doctor or dietitian to see if you can get samples to try. There are so many new formulas on the market today that I am sure you will be able to find something that you like.

    Other than that eat lots of fruits and veggies! They are usually very low in phe, so you will be able to eat a lot more without taking up too much phe.

  5. Registered: Oct 12, 2010

    Posts: 0

    belfast, INTERNATIONAL

    gale said on May 28, 2011

    on the diet now you wont be able to do it without low protein food on a regular basis. its no wonder your starving. can you contact your gp and tell him you need a regular perscription for loe protein products every month? that at least will lower your levels a bit more.

  6. Registered: Jun 21, 2011

    Posts: 0

    Pittsburgh, Pennsylvania

    Wow, I’m in the exact same situation as you are… I used to be on 15 exchanges when I was little and I remember being hungry all the time. I too thought the depression/anxiety, bad memory, focus, etc. was normal or a coincidence. I’m pretty much going on the diet again to be in the best of health. I feel like at last someone actually understands!
    The amount of exchanges you have varies depending on how many of enzymes you have to break down the protein… It’s different at different ages though. At least I think so.

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