Hello PKU.com

Hello PKU.com

Avatar of Hunter

Hello PKU.com

November 4, 2009 in Uncategorized

Hi Everyone! My name is Hunter and I am 23 years old. I have been on diet in one way or another all my life but really struggled in high school and college... and even got to the point where I tried LNAA supplements (NeoPhe). More recently I have had some big changes in my life and have flipped 180. I am now drinking my formula and counting exchanges again... weighing foods and recording everything I eat. My levels have gone steadily down since the summer, when they were ~20. I am a graduate student at Boston University in their Nutrition Program. I love nutrition, and got into the field originally because of PKU. I have always loved learning what is happening in my body, but for so long failed at "practicing what I preach." I even found my mind often make excuses to not follow the diet from my nutrition background. I am in my Dietetic Internship right now, finishing in December and sitting for my Registered Dietitian exam in February in hopes of working with families, kids, adults and women with PKU. My rotation right now is with outpatient nutrition counsleing. I find myself everyday helping patients with diabetes, acid reflux, crohn's, IBS, and other issues figure out what they can eat that is healthy for THEIR body. Something clicked one day... if I am going to talk the talk I gotta walk the walk. At this point I had been on a low pro diet for some time, but something in me changed! My levels were OK... but not where I wanted them to be and the motivating talk I was giving to my patients suddenly was my own voice speaking to me saying YOU CAN DO THIS, YOU WILL DO THIS, YOU HAVE TO DO THIS. And so far I have not looked back... thats not to say it hasn't been easy. It's been almost a month I have been tracking and not skipping formula. I plan ahead. I carry extra snacks and formula. Sometimes I feel like ALL I think about is PKU and how many exchanges are in this and should I eat that? But I will say to everyone that is struggling on and off diet like I had been for years and years... I have not felt as good as I feel right now for a very long time. My mind is clearer, I am not getting headaches, I am not exhausted all the time, I do not have muscle twitches or anxiety. And the best part of all is I have found products along the way to prove my old self wrong--- PKU foods can be delicious! AND more importantly, HEALTHY!! I love food and I love to cook and over the past few months I have not sacrificed either. I do have to be creative and find things I enjoy, and I do want some 'real' pasta occasionally, but my mind is clear enough and focused to say no- I can make a LoPro version of that easily, and I won't feel terrible about it after! So... so far so good. I know I have a long way to go but from how far I have come in such little time and for how GREAT I feel... that is enough motivation to keep on truckin! I'd love to hear other's experiences about going back on diet, or being off diet, or being inbetween. I am always looking for great recipes and snack ideas. Please keep in touch- we all can be such a great support to each other. : ) Happy Eating! -Hunter

4 Reviews of Hello PKU.com

  1. Registered: Feb 26, 2007

    Posts: 0

    Chicago, Illinois

    I know EXACTLY what you’re talking about. I have been on/off for the past 15 years or so…always feeling better when on. I’ve spent my life fighting the diet — even when trying to manage it I tried to avoid lo-pro breads & pastas as much as possible because I wanted to seem healthy, not different. Plus, sometimes I want to spend money on entertainment or shopping rather than dietary products. :). Something clicked with me about a month ago too…I took my boyfriend to an educational meeting, and he was like “this is something you really need to do!” So I’ve been working hard & have stopped avoiding all the low protein foods for the last few weeks. It’s made life much easier overall, and my boyfriend has noticed how I’m SOOO much less sensitive & emotional than I was a few weeks ago. (I don’t cry over everything now). Anyway, I’m glad to meet people who understand my story. Nice to meet you & hope we can be of help to each other somehow.

  2. Registered: Oct 1, 2009

    Posts: 0


    I can relate to both of you, lorsar and Hunter. I too went right off diet in my teenage years and wanted to pretend it just wasn’t a reality. I wanted to be able to eat out with my friends and not order something different and be asked a million questions about why! I didn’t have my formula on a regular basis either. However since I got married in 2003 and decided we wanted children I knew i had to get it under control. I have been on diet since then and have two healthy children to show and try to keep my levels in a safe range. I incorporate the low protein products into my daily diet as well as “normal” foods and i don’t weigh anything I just make sure I have one low protein meal a day and stay away from high phe foods. I have found a really good balance now. It is so great to have found people who I can relate to. take care :)

  3. Registered: Jul 1, 2009

    Posts: 0


    *Applauds* way to go Hunter! It’s really encouraging to hear your story and to know that we are not alone in our struggles, and that there IS a way through it. I too have struggled with my diet since my teen years and been in the ‘denial’. It wasn’t until this year when I realised the commitment it would take for pregnancy and when people started mentioning that we don’t know the affects of off-diet for elderly years (Alzheimers etc) I pulled my head in a bit more and I hope that once I have had all the children I want to have (2-3) I will continue to follow my diet correctly for benefit in later life. I have noticed I feel MUCH better now that I’m following it properly in preparation for pregnancy.

  4. Registered: Jun 27, 2009

    Posts: 0

    , New York

    Hi Hunter
    Hearing stories like yours make my day. As a parent of a child with PKU, it is such a source of encouragement for me.

    If you are looking for recipes, I recently launched a culinary website devoted to low protein cooking called Cook for Love. When you get a chance, please check it out (www.cookforlove.org). I would really value your feedback — let me know what you like and don’t like and what you would like to see more of.

    Take care,

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