The Story of Me and Phe


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The Story of Me and Phe

by Linda A. Gleason, MS, RD

© University of Wisconsin-Madison 2000
for use with Know to Grow Session B1

When my parents talk about me,

they often talk about phe.

When my doctor talks about phe,

he’s often talking about me.

When my dietitian talks about me,

she talks a lot about phe.

You may wonder how

phe got linked up with me.

It started at the beginning,

well almost the beginning of me.

A week after I was born my parents got a phone call.

They were told that my phe was high.

That’s how the business about me
and phe got started.

Every baby gets a blood test

soon after they are born.

My test showed that I had too much phe in me, actually too much phe in my blood.

My parents had my blood checked again

and sure enough-

there was still too much phe in me.

They learned that too much phe
in me was really dangerous.

It meant I had a serious disorder called phenylketonuria.

PKU for short.
Too much phe for too long would mean that my brain would not work right.

I would not learn to do many things that they had hoped I would be able to do.

Babies with PKU who were not treated, grew to be mentally retarded.

But my parents were very hopeful ---

there was a treatment.

The treatment has a lot to do with

and me.
You see,

my body was not using phe in the usual way.

Phe comes from protein in foods.
Protein is like a long chain--- a chain made up of small parts called amino acids.

Phenylalanine is one of those amino acids found in the protein in food.

Phenylalanine is what I call “phe” for short.

When we eat protein

our bodies break it apart into small pieces,

called amino acids.

Our bodies do this so it can use the amino acids from food protein to make muscles and new proteins.

Building a new body protein from amino acids from food proteins.

In other words, our bodies break up food proteins for the parts.

We use “the parts”, the amino acids, to make body proteins including muscles.

Everyone needs body protein to keep them




Because phe is part of protein, foods that have lots of protein have lots of phe.
In someone who doesn’t have PKU,

it’s OK if they get lots of phe.

Phe from



1st phe goes to 2nd phe

make body proteins gets changed

for growing to

and tyrosine


So all of the phe gets used up.

Since I have PKU,

this is how my body uses protein.

My body can break apart the protein into small amino acids.

My body can use phe to build body proteins.

phe from food


1st phe goes to

cannot be changed to tyrosine
make body proteins

for growing and working

Here’s the difference.

My body cannot change any extra phe to tyrosine.


my body cannot handle any extra phe.

If I eat too much protein from food, any extra phe builds up in the blood and is harmful to me.

The extra phe is especially harmful to my brain.

Too much phe changes the way my brain works.
This can make it harder for me to do well in school.

The tricky part about all this is that

I still need some

for me.
I also need all the other parts of protein

so I can make body proteins

including my muscles.

My parents learned about the treatment for PKU when I was a baby and I still follow it today.

The treatment is a special diet.

The diet for PKU

gives me just the right amount of phe

and protein and everything else I need to grow and learn.

But I don’t get too much phe in my diet to make my level too high.

I get protein from a special PKU drink.

I call it my milk but it’s not from a cow.

I drink it every day!

It has lots of protein,

but no phe, and that’s perfect for me.
All of the phe I need for me comes from foods that are low in protein.
Fruits, vegetables, cereals, crackers, and special low protein foods are low in protein.

They are “yes” foods.

“Yes” foods have a small amount of phe.
I eat “yes” foods in the right amounts so I get just the right amount of phe for me.
That means I weigh or measure out the

“yes” foods I eat.

Even too many “yes” foods give

too much

phe to me.
I never eat meat, fish, chicken, eggs, cheese, nuts or milk.

They have way too much phe for me.

Here’s what I do---

  • I eat the right amount of phe by eating only “yes” foods.

  • Weigh and measure “yes” foods carefully.

  • I drink my milk, which has no phe.

  • I check the amount of phe in me by taking blood samples.

Now phe and me get along famously.

: pku


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