Low Protein Living Consumer Forum

Question about using add ins - help please!!

2008-08-07T05:21:53+00:00

hello all

My dietician has recently sent me a sample of add ins, but I’m a little cautious in trying them as I’m not entirely sure how to use them.

I know you add them into your food, but can you add them to absolutely anything or does it have to be added into some kind of sauce?

She also sent me the Add Ins cookbook along with it, but to be honest most of it really doesn’t appeal to me (it doesn’t help that generally I don’t like low protein products OR tomato based sauces), and I generally don’t have time to make these things. I noticed though that they all seem to have some kind of sauce, into which you put the add ins.

So, my guess is that i can’t just sprinkle them in with my coco pops or on top of my toast and mushrooms (minus the low protein sauce!!)?

Also - I understand they need to be used with food that is the correct temperature.... can someone advise on what is acceptable and what isn’t?

Can someone help please!!!! I’m going overseas soon and obviously add ins would be easier to travel with than lophlex LQ!

Thanks
Kate

Christmas with work

2008-12-23T09:47:48+00:00

Hi all

I’m going for my Christmas lunch with work today and really I can’t be doing with it. Obviously I’ve had to go for the veggie option which in all honesty isn’t that exciting some roasted pepper concoction!! I’m actually sneaking a few lo-pro bread rolls in with me so I can fill up on the soup!! What would great is PKU restaurant! But I suspect it would be fairly empty as I can’t see most of my colleagues sitting down to a low protein dinner!!

Anyways, for all you PKUers out there, have a great Christmas!

Danno

One thought…

2008-12-15T20:53:41+00:00

Hi,
Mazza here from Ireland.

With the recent pork scare, i am feeling pretty happy and smug at being on the diet. People are amazed when i tell them i have never eaten pork or meat. So many food scares in recent year from pork, beef, chicken. Its nice to think i dont have to rely on meat and that no animals have been harmed in the production of my food.
Mazza

Alcohol & PKU, to drink or not to drink!!

2008-06-18T09:22:58+00:00

I was just wondering fellow PKUers deal with alcohol? do you know the phe content?

I have no idea. A few years ago I asked my dietitian, and her answer was from a dietitians point of view...which was just dont drink it, but if you do make sure it’s only small amounts, but no beer.

Of coarse when I was a teen I had a few, but because I didn’t get a straight answer I just drank what I felt like.

I found I got very sick easily! But to this day I dont know what the better option is.

Luckily I am a non drinker, as I find all alcohol tastes really bitter anyway.

What are your thoughts on alcohol on the pku diet. Do you think we get sicker or have worse hangovers than non pku people, and do you drink alcohol?

Any ideas would be appreciated

Christmas Recipes

2008-11-09T19:00:45+00:00

Hi All,

I noticed in the last newsletter that there were some interesting Halloween recipes, are there any good recipes for Christmas that I should start considering?

SophiesDad

Aspartame abroad

2008-12-30T15:20:41+00:00

Hi Everyone,

I have a bit of a random question, is aspartame known by another name in Europe? I’m going skiing next week in Austria and need to know what they might refer to it as? Is Austrian much different to German?

Hope someone can help

Sally

getting protein?

2008-12-29T13:28:55+00:00

Ok, what exactly is the “protein equivalent” that is found in our drink? and tablets?
As i understand, it is a chemical form of protein with everything included in it except the phenylalanine. But I don’t know if this is correct?
If it is correct my next question is if our bodies need protein in order to build tissue, isn’t phenylalanine the mostly responsible for the tissue growth? I guess my question is really how do our bodies compensate for the lack of an essential amino acid that we are not receiving?

Help

2008-10-21T09:15:12+00:00

Hi,

This is my first time on this site, my name is Sharon, my son lee is 3 and has PKU, he is such a fussy eater which makes things so hard because of the restricted diet. has anyone gone through this?? He wont try new things at all.

Sandwiches

2008-08-18T12:02:33+00:00

Does anybody have any good ideas for sandwiches? I get a bit bored with mine and like to ‘mix it up’ a bit!

I take my low-pro bread to work with me and I ask the cafe near my work (owned by a close friend) to toast my two slices of Low protein bread and put lettuce, carrots, beetroot, tomato, tomato sauce/ketchup, salt and pepper. I call it my hamburger without meat! I also use homemade tomato relish which is always nice with lettuce.

I’d like a few more ideas but obviously I’m pretty restricted in what I can have.

3 questions~ How much -phe do you get in a day? Do you know?

2008-12-04T09:11:59+00:00

or do you just add-lib your diet & leave it to chance?
What is a typical day of food for you?
& what was your last phe level?

I’ve always wondered exactly what others w/ PKU eat on a dialy basis?

I’m getting better at controlling my diet. I have planned menues I created myself.
To get the calories my body needs & maintain my phe levels. My most recent phe level was 4.4
I expect that to go down even lower. I have classical PKU my level started at 27 in Aug08

A typical day on my PKU diet consists of -( me baking biscuits daily- I usually bake 5 days in advance
(6 biscuits total have 42mg of phe) I need to get 6 packets of Loflex orange flavored in me dialy-
which was increased from 5 packets.

I have 5 -6 snacks a day- minumun snack consists of at least 1 packet of Loflex orange flavored & 1 biscuit- then I
add some fruit-, Strawberries, peaches, apricots, or applesauce, tang I have 2 glasses a day............
all & all that’s my diet I eat approx. every 3 hours- if I wake late I double up on formula packets to get it all in.
It works out fine. My levels are consistently low. As my diet stays the same .......
but remains interesting enough for me; as the biscuits are filling..... & I love fruit. ....

I usually stay around 90-100mg phe a day. It’s not accidental but deliberate.

Now what’s your routine?
________________________________________________
Oh & BTW Hi everyone my name is Cheryl- I have Classical PKU
was on the pku diet for the first 6 years of my life; recentlly
made the change to return to the pku diet for life on 10-29-08
I look forward to getting to know everyone better.