Depression & the PKU Diet

Living with PKU

Living with PKU is hard, you need to follow a very restricted low protein diet for life which may involve eating and drinking foods and protein substitutes that you may not like. Feelings of isolation, loneliness and embarrassment can start to develop as a result. Dr Gisela Wilcox at the Salford PKU event, recalled a PKU child asking if they ‘can eat human food now’ at their birthday, which demonstrates how different PKU patients can feel their entire lives as a result of following the PKU diet.

Eating out, and being spontaneous is so difficult that many people feel that staying and eating at home is the best plan of action to stay on their PKU diet. Many patients have also experienced being the only ones not invited to a birthday party, further distancing them from their peers.

What is depression?

Depression is the most predominant mental health problem worldwide. According to the NHS, most people go through periods of feeling down, but depression is when you feel persistently sad for weeks or months, rather than just a few days. Depression is a real illness with real symptoms, it isn’t a sign of weakness or something you can “snap out of” by “pulling yourself together”.

How to tell if you have depression?

Depression affects people in different ways and can cause a wide variety of symptoms including, but not limited to:

• Lasting feelings of unhappiness and hopelessness
• Losing interest in the things you used to enjoy
• Feeling very tearful
• Constant anxiety
• Constant tiredness
• Sleeping badly
• Having no appetite
• Various aches and pains.

These symptoms can be quite mild or very severe, or somewhere in between.

Low protein diet & treatment of depression

Treatment for depression is varied, and you should always consult a health professional who will guide you towards the right treatment for you. It is also important to understand the role of diet in this area.

Certain key nutrients (Vitamin C, Vitamin B12 and Folate (Folic acid)), which can only be obtained through diet, are involved in the making of chemicals called Biopterins. These play a significant role in the synthesis of a number of chemical messengers in the brain called neurotransmitters, including dopamine and serotonin. Neurotransmitters are a type of chemical messenger which transmit signals across from one nerve cell to another.

Dopamine brings feelings of pleasure and provides a happiness boost based on a certain action. Vital brain functions that affect mood, sleep, memory, learning, concentration, and motor control are influenced by the levels of dopamine in a person’s body. A dopamine deficiency may be related to certain medical conditions, including depression and Parkinson’s disease.

Serotonin is more of a mood stabilizer than a booster. The non-mood related functions of serotonin and dopamine also differ, as dopamine primarily controls movement and serotonin contributes to sleep and digestion.

What can help alleviate the symptoms of mild to moderate depression on the PKU diet?

• Socialise with others in the community, as well as with family and friends outside of the PKU community. Interaction will combat feelings of isolation and loneliness. There are lots of events held throughout the year, across the UK, as well as the NSPKU’s annual conference.
• Connect with the community online through social media. You might be the only PKU person in your village, but there is a huge network out there! Some suggestions: PKU UK & Ireland, PKU Worldwide Support Network, NSPKU, Low Protein In 15.
• Join the gym or start to walk every day as part of your routine. Exercise can have a massive impact on how you view yourself and how you feel mentally.
• Stay on a low protein diet and keep your Phe levels consistently low as directed by your dietician. The more volatile your levels are, the higher the risk of constant tiredness, sadness and low mood.
• Make sure you discuss low mood with your PKU clinic as they are the experts in your treatment.

For more information, contact us on ukinfo@cambrooke.com.