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Paleo For PKU Part I

My Intro

Two weeks after I was born I was diagnosed with a Metabolic Disorder called Phenylketonuria. Ever since I was diagnosed I followed a strict low protein (lowpro) diet and drank formula 3 times a day from a 24 oz. shaker bottle. My mother closely monitored me until I was 17 with formula prep, formula drinking, eating meals, and snacking. When I went to school I would drink my formula in the Nurses office. Every lunch lady knew who I was. I was a professional at measuring and pre-packaging my lunch. Each meal I would measure out exactly the amount I needed with a scale and measuring cups. I would read Nutrition Fact Labels like a pro! I was never allowed to put any un-measured foods in my mouth unless they were completely free of Phenylalanine. (which is basically water and sugar). I was only allowed to have 4g. of protein a day from food. Just to give you a perspective, 4g = 2 individual bags of doritos. All of my life, all I knew about food was fruits, vegetables, formula, and counting protein...

... Until I reached the age of 18. When I turned 18 I was introduced to a clinical trial called PEG-PAL. This was an enzyme replacement trial testing the enzyme Phenylalanine Ammonia Lyase. This drug allowed me to eat any food that I wanted. I quickly became overwhelmed with the newly found freedom I have been given. I started trying all types of food. It wasn’t until about 6 months ago that I really started questioning, am I eating what I should be? I was so used to being handed my whole day in one shake, and not having to worry about any micronutrients. All I used to focus on was Protein and my new eating habits were a mess! After reevaluating my whole diet, I figured the Ancestral Lifestlye was for me.

What is Phenylketonuria?

Phenylketonuria (PKU) is a metabolic disorder where the body’s enzyme, Phenylalanine Hydroxylase (PAH), does not properly break down the amino acid Phenylalanine. When someone with PKU eats too much protein, the Phenylalanine does not get broken down in to Tyrosine. This leaves the Phenylalanine in the blood and travels to the brain. When Phenylalanine reaches the brain it can cause foggy memory, fatigue, depression, anxiety, and a whole list of other cognitive problems.

This disorder is normally diagnosed at birth. When a baby is born, a test is run called Newborn Screening. This tests for any genetic disorders that might affect the baby. PKU is a rare and a newly discovered disorder. Recently, the amount of treatment options has increased profoundly.

The main, (and most effective) treatment for PKU is dieting. Following a low protein diet is crucial for normal brain development especially in children. Following a low protein diet is a mandatory treatment for all patients if they want to function properly. When the disorder was first discovered, doctors and nutritionists thought that stopping a low protein diet after the age of 6 was not harmful. Later, it was found that many neurological brain problems occurred due to stopping a diet even though they were fully developed individuals. The amount of protein allowed per diet varies with each diagnosis of PKU. ​​

This is the most frequent asked question anyone When I followed diet, every day I would drink

with PKU has been asked. Growing up I was able my medical formula. This formula is packed

to have fruits and vegetables. Potatoes contain with micronutrients I was not getting from

a little more protein than other vegetables so I my diet. Unfortunately, most are full of nasty

needed to count French fries. Today, there are additives, like added sugars, hydrogenated

more companies focused on lowpro foods and vegetable oils and artificial colors. As such, it

medical formulas. Low protein pastas, breads, is better to try to get on a PKU-specialized

and even rice and chocolates are sold online. The amino acid only blend and then adding in a

only difficulty with getting these foods is that quality multivitamin like Nutreince, as well as

they are very expensive! That being said, having fish oil, for preformed omega-3 fatty acids.

adopted an ancestral diet myself, I can honestly

say that it is probably better to just avoid the

lowpro food products and to simply stick to

vegetables, fruits and a quality supplement


Emory University Annual Metabolic Camp

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