My eating

Some young people with CGD will find that it is difficult for them to maintain their weight and this can mean that they grow more slowly and are not as tall as their friends. It can help to have a few more calories. Adding high calorie foods to the diet such as butter or cheese can be sufficient but some people may need a little extra help from dietary supplements that usually come in the form of special drinks, available in fruit flavours or milkshake-type drinks. Your doctor or dietician can prescribe these for you.

Maybe you feel that you know you need to eat more but find that you don’t really feel hungry or can only manage small amounts? Don’t worry – try to eat small frequent meals rather than battle through one large meal, which might put you off altogether. Don’t skip meals – try for three small, manageable meals a day and snacks at break time, after school and before bed, such as plain biscuits, milky drinks, cereal, fruit or yoghurt.

People with CGD tend to use up their energy quicker than other people and so need a bit more ‘fuel’. But when you’re young, being told you’ve got to eat more food may make you worry that you’ll go the other way on put on weight. Don’t worry – if you eat a balanced diet with lots of different foods and fruit and vegetables it’s very unlikely that you would put on too much weight. It’s definitely not a good idea to go on a diet, without the help of a doctor, nurse or dietician (a specialist in food and nutrition). You can ask your doctor to refer you to a dietician at your local clinic or hospital. If you have worries about your weight or about food talk to someone who can help – your school nurse, doctor, or the CGD nurse.

This is something children and teenagers with CGD are often worried about – it’s a fact that they tend to be smaller than their friends. This can be for a number of reasons. The stomach may not digest food and absorb the goodness very effectively, so the body does not get the things it needs to grow. Sometimes all of your energy is used to fight off infection. Puberty can be delayed so that teenagers have the appearance of someone much younger. Don’t worry – you may start getting taller later on than your friends and you will catch up with them eventually.

Steroids which are used to calm inflammatory infections can also slow down growth and affect how tall you are, if taken over a long time. If you’re only having a few days on steroids, this won’t affect your growth and height. When your doctor reduces or stops your course of steroids, normal development and growth can get going again. If you are anxious about this, talk to your doctor about it, or ring the CGD nurse. They will be able to reassure you and to tell you about possible future options if they think that a ‘kick start’ for growth is necessary. They may recommend you see a growth specialist (called an ‘endocrinologist’).

Most people do not need to take vitamin supplements and can get all the vitamins and minerals they need by eating a healthy, balanced diet.  Your GP or medical team may recommend specific supplements if you need them.  General advice about vitamin supplements can be found at https://www.nhs.uk/common-health-questions/food-and-diet/do-i-need-vitamin-supplements/