Community Discussion Forum Adults and PKU need advice

Viewing 11 posts - 1 through 11 (of 11 total)
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  • #6052
    Avatar of kate

    Joined: 7/21/2007 Hi, my name is Kate and I am new to this site. I am 34 years old and have been off my diet from i was 6 months old. I have had no follow up medically from i was 11 years old and have just started to research PKU as my husband and i are trying to start a family. I really have no idea about PKU and to tell you the truth this is now frightening me somewhat! could anyone suggest how i go about starting a diet before pregnancy? I have contacted a metabolic clinic and i am going to have my levels checked, fist time in 23 years! I think i have slipped through the net somehow! Any advice would be really appreciated. k

    Avatar of Breanna

    I can see how that would be frightening. I’ve heard from adults who are trying to go back on diet say that they had to slowly go back on. What I mean is first they would start to drink the formula, then they would take out meat, grains (regular breads and pastas etc) and they would take one thing out of their diet at a time. nAre you able to get access to low protein foods? That would most likely make things alittle bit easier for you. You can order from places like dietary specialties, Cambrookes (, Maddy’s, PKU perspectives etc. I’m sure if you talk to your specialist doctor that your working with to get back on diet they could point you in the right direction.
    I guess I’m not to experienced in this because I’ve never been off diet and had to go back on. But I wish you the best of luck with all of this! If you want you could go and there are a few adults who maybe able to help you. nBreanna n16 CPKU

    Avatar of Meaghan

    I think the best thing would be to gradually go back on the diet. I have never been off of it but I know how hard it is to resist certain foods. I would say start with simple things like oranges (and other fruits and veggies high in phe), diet sodas, and cookies. Raplace pastas with the PKU friendly versions and progress to staying away from meat, seafood, and dairy. Those are definitely the most important to stay away from when you are pregnant since they usually contain the most protein.

    Avatar of Alicia

    Hi Kate,
    My name is Alicia and I am in the same boat you are. I am 22 and recently got marrried. We would like to start a family as well as you know I am trying to get back on my diet. I have been off my diet since I was about 10 yrs old. So I didn’t know a lot either. I just saw my doctor a week and a half ago. They will test your levels of protein, vitamins, etc. My nutrtionist told me to cut out meat first. I did that and I kept eating pastas to keep my levels somewhat high because if you get to low with your phes you will starve your body. I got some food ordered. There are special pastas, cheeses, burgers, breads, etc. A good place to look for those foods is Cambrooke Foods. You can search it on the internet and look at all the foods. Also there is Dietary Specialties. Also I was wondering where you live. Some states in the U.S. will cover some of your special foods. It is hard to get your levels down without your formula and special foods. Just make sure you don’t starve your self from protein before you get your foods and formula. With starting my diet (formula and foods) I am eating 600-700mg of phe compared to 2,000-3,000mg phe when I was off my diet. I feel a lot better too I have a lot more energy now. I feel like a millon bucks!!! Oh and just so you know Phe stands for Phenylalanine (which our bodies can’t break down). It is an amino acid in protein. Our bodies don’t produce the enzyme that breaks down the Phe. Just in case you didn’t know. If you have anymore questions don’t be afraid to ask. I will try and help!! I don’t know anyone else that is going through what we are so its nice that we can chat. Send me a message if you would like.
    P.S. Sorry this is so long. I hope it helps though.

    Avatar of Olivia

    hey, u sound like u could use this website! it’s a pku faq. hope it’s helpful, and good luck with your diet!

    Avatar of Tracie

    [/COLOR][COLOR=blue]Hi Kate,
    I too was off diet for well over 20years.
    I went back on to have children.

    I started off slow.gradually cutting out protein(meats,Chicken &fish etc.)

    Let your body get use to the diet before pregnancy.(formula and all)
    If your biological clock is ticking the diet isn’t all that difficult.
    The part you want to make sure you are good at is keeping your formula down with morning sickness and all.
    I was on diet w/formula intake for about 3 to 4 months prior to concieving.
    You wont puke if you get use to the flavors first.(of formula)
    You get alot of calories from popsciles,a crap load of fruit.
    This was my diet for my 9 months:
    Breakfast:1c cereal w/juice instead of milk.
    1 slice of toast w/jam
    Formula mixed w/sprite,mangos,and ice.

    Lunch,and Dinner were almost the same,cause i as so afraid of not having a healthy child.
    6 Tbsp of rice
    1c. Green beans
    formula w/same as above
    1 slice of bread w/butter
    Dessert:Mocha mix non-dairy (way Yummy)
    Popsciles(extra calories)
    Sprite(free food)

    I did alot of research online.
    Good Luck.
    You can do it,and it is well worth it.


    Avatar of Amber

    hi my name is Amber and i am new to this thing i have had a baby a year ago and she was born with some problems nothing to with the pku though but just since then i’ve had problems staying on my diet i know its bad for me me to eat stuff i shouldn’t but i like i dont care about my health i worry about my kids more i would like to go back on diet and i do really well for two weeks and then i’m back to eating things i shouldn’t any advice to what i can do to stay on diet?

    Avatar of Nick

    It can be done. I was off-diet from age 3 until about 32. In a sense, I did go back on-diet slowly, but that was just a matter of trying to determine what my optimum level of dietary protein and formula was. Now, I’m on Kuvan and eating 45g of protein from food, and pretty stable with my level staying around 6. How difficult being on-diet is varies, for me it’s not a big deal (partially due to the fact that I have such a high tolerance, particularly on Kuvan). It takes discipline, but it can be done.

    Avatar of Amber

    what is this Kuvan i’ve heard the name and how its helped people with thier diets but i know nothing about it or how to get on it myself

    Avatar of Christina

    I have PKU.I have not been on a diet shince I was about 11.I’m 32 now and have a very healthy 2 year old.I can’t say that going on a diet again will be helpful or not.My levels when I was pregnant were so good I never went on a diet.I was almost 6 months before I knew I was pregnant.I wish the best for you.

    Avatar of Nick

    Kuvan is a medication recently approved by the FDA in the US to treat PKU. Not all PKUers respond, as it boosts what ability a PKUer has to digest phe. If you have classic PKU it is less likely to work, as you may have less residual enzyme activity. I have variant (or moderate) PKU and respond well. As for going on the diet – you need to have your levels checked. The previous poster said she didn’t need to go on the diet during pregnancy as her levels were fine. That’s ok IF your levels are below 6 off-diet. If not, you NEED to be on-diet to prevent possible birth defects.

Viewing 11 posts - 1 through 11 (of 11 total)
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