With urea cycle disorder (UCD), eating a carefully balanced diet is important. This means a diet that is low in protein. A balanced diet also means getting the right amounts of calories and healthy carbohydrates and fats. It can be tricky to find the right balance.
The amount of protein a person can eat is different for everyone. A dietitian can help figure out how much is right for you. Eating more will make your ammonia levels rise. But your body needs protein to stay healthy, so you also don’t want to eat too little. If you don’t eat enough protein, your body will take what it needs from your muscles. This is called catabolism. Catabolism can make your muscles weaker –and it can make your ammonia levels go up.
You will hear a lot about amino acids. Amino acids are important for muscle growth and repair. But they’re also important for other things like your immune system, your energy and your sleep cycle. Your body makes some of the amino acids you need. Others you can only get from food. These are called essential amino acids, and they come from foods that have protein in them. Since you can’t eat too many protein foods, you might not get enough amino acids. A lot of people need to take specific amino acid supplements. Talk to your dietitian and metabolic care team about which ones are right for you.
Tips for healthy eating
A dietitian will help you figure out foods you can eat, teach you how to keep read nutrition labels and keep track of what you eat. You dietitian can help you make a grocery list and share healthy recipes. Here are some healthy eating tips:
- Work with your dietitian to make an eating plan that is right for you.
- Read food labels and track how much protein you are eating.
- Eat foods from the different food groups. “Eat the rainbow”
- Eat enough calories so your body doesn’t have to break down protein for energy.
- Make sure others know about you or your child’s dietary needs (e.g., school).
- Take your supplements as instructed.
- Stay hydrated.
Support groups and organizations can be good places to get new food ideas and recipes, too. Two examples are www.ucdincommon.com or www.ucdandyou.com
For more support and information, reach out to your CVS Specialty CareTeam or the following resources:
National Urea Cycle Disorders Foundation: www.nucdf.org
UCD Family: www.ucdfamily.org
Global Genes: www.globalgenes.org
Rare Diseases Clinical Research Network: www.rarediseasesnetwork.org/cms/ucdc