I’ve wanted to start a topic like this for a while now because, well, I am a really lucky guy to have my girlfriend in my life. she and I almost cook every time we get together and she has a lot of the multipliers memorized already and even puts foods of similar multipliers together (i.e. onion and redpepper both have .29 multipliers, so she’ll cook those in the same pan.) What I really love about her is that even though I have this genetic disorder that requires 24/7 vigilance, she still sticks with me and loves me and tries to make it easier on me… She really is an amazing person…
I’m not dating anybody, but I think that is sooo sweet! But my friends are all very supportive of my PKU if that counts.
I have a question, what are multipliers? Is that another way to count your daily food? If it is I don’t count in that, I count in mg of phe. nBreanna 16 CPKU
Let’s see… I thought everyone with pku used multipliers… whooopsie. A multipier is the amount of phe (mg) in a food per gram. So, for an example, let’s use onion. Onion has .29 mg of phe. I want about 100 grams with dinner. I weigh out 100 grams of onion on a scale, and multiply 100gm X .29 to get (=) 29phe. Voila! Did that make any sense? Cuz I tried to explain that to other people without PKU and I think I totally lost ‘em.
Is it customary to end a reply or a posting with your name, alias, and age? nGarrett, Dr. Duckers, age 16
Oh okay. Yeah that made sense. Alot of times when you explain stuff to non PKU people they won’t understand because they haven’t grown up with all the medical terms we have. nAnd nope I count in mg of Phe. I know of people who just count in grams of protein or exchanges (1 exchange=15 mg of phe). I’ve heard of something called units…but I have no idea about what this is. nYou don’t have to post your name, age and all that after your post if you don’t want to. I just do sometimes because I’m on the PKU listserv so I’m kind of used to that. nBreanna
Making baked apples, eggplant burgers, zucchini boats, mixing broccoli/mushroom, celery/tomato, onion/pepper–the way I view all this? Ways to show you I care about you. Cooking in general works this way for me. I like feeding people. It’s not a huge deal but it’s an easy way for me to “tell” you I care about your head, which basically is what liking/loving someone is or should be, regardless of PKU.
It’s just how you are, how you’ve always been. I can’t imagine you with phenylalanine hydroxylase. Plus, without your milk, you’d smell different, and that would “stink.”
And as to memorizing multipliers–it’s a good thing I didn’t learn about multipliers when I was seven or eight. It triggers a stifled little obsessive/compulsive part of me. I mean, come on, scientifically-significant numbers for every single kind of food? Even if it had nothing to do with you, my brain would go, “oooooh, really? tellmetellmetellme.” That you get a surprised/happy look on your face every time I say, “Cauliflower is .7, and broccoli is .85, right? And mushroom is .83?” just adds to the appeal.
P.S. That was a sweet post. nP.P.S. Hope your throat feels better.
My fiance and his parents and sister are sooo accepting! They try harder than my own family sometimes lol. They have this “good list/bad list/maybe list” thing on their fridge and everytime they see something in the store they write it down. I love him so much. He always makes sure i take my medicine and dont eat too much protein. Which is good cause were both Irish so its a veryyyyy good chance our kids will have PKU. Meaghan 18 with CPKU
i do not have a girlfriend but i would feel much better to date someone with pku like me
I was off diet when I met and started dating my current boyfriend, so when I finally told him about it, he thought it was something I was, like, making up, or something.
When I finally decided to go back to the diet, I really haven’t gotten much support from him, and it makes me really sad, I mean, I’d think if I was importaint to him, he’d at least do a little research or something since it is something I have, but, no, that’s never happened. I don’t even think he knows what it’s called. I recently got my best level in forever (used to be in the low teens, but this last time it was 3.6!!) I told him I got my level back and he was like “Oh, you mean for your PK stuff?” Yes, he called it “PK” that’s not a typo. I don’t know, what do you guys think?
I’m not sure why he would be resistant to learning about pku… has he had a bad experience with a genetic condition in the past? Many genetic problems have dramatic/tragic effects, so maybe the idea of something being “wrong” with you scares him. Just a thought.
Regardless of why, if it were me and my relationship, I’d need to talk to him about it. Since it seems to bother you that he doesn’t act like he cares about your diet, see what happens if you tell him that. Maybe he has no idea you want him interested. Since you were off-diet when you met, maybe he doesn’t understand that your diet’s important. Maybe he thinks the best way to deal with it is to just pretend you’re “normal” so you don’t feel awkward about it. There are lots of explanations other than that he doesn’t care about you!
How much have you tried to explain to him? Maybe you could try showing him this website:
It’s pretty basic, and won’t scare him off with too much medical terminology.
I agree with jabber. Taking it from his perspective… “you weren’t on the diet so your disease isn’t a big deal, if it was you wouldn’t have been off your diet in the first place.” You can’t blame him for not understanding it or not being as concerned as you think he should be. You should sit down with him and explain what PKU is. I hate to say it, but people without PKU don’t have to do research. Honestly, it’s up to us to teach them because there is too much false info out there anyway.
Meaghan- That’s so great to hear your boyfriend and his family are supportive! That is defintally the kind of boyfriend I want someday (when I start dating that is).
Demon_ghost- Lol, when I was at PKU camp last July me and a friend there both joked around about how we thought it would be pretty cool to marry a PKU guy and have a little PKU family. It would be pretty neat, time consuming and hard but I think it would still be kinda cool…but that’s just me.
Mamasteve- Like Jabber and Meaghan both said, he just might not realize how important our diet is. The truth is in alot of cases people without PKU aren’t going to do research. For example, basically all of my friends know I have PKU and of course that wasn’t the case from the beginning and they had to learn the info somehow. They all mainly learned by asking questions and not by researching it. Even though they didn’t go out and look up what PKU was all about doesn’t mean they didn’t care and I’m sure it’s the same way with your boyfriend.
If you really want him to take more interest in it then sit him down and tell him that. He might think that it’s something you don’t want to talk about since you didn’t tell him right away and I’m sure it does NOT have anything to do with how much he really likes you. These types of things are just situations that you have to try to work past. nBreanna 16 CPKU
my new name is rustynail so that is what i will be under now
I just want to talk to people with PKU.