The best diet for anyone (whether you've got CGD or not) is a healthy diet.
That means including lots of different types of food in our diets, including five portions of fruit and vegetables each day!
This doesn't mean that burgers and pizzas are out– just remember to have some 'healthy food' too!
Here, we take a look at food matters and CGD, including:
- CGD, eating and diet
- 'I don't want to get fat!'
- 'I'm worried I'm not growing like my friends'
- Steroids and my height and growth
- 'Should I take vitamins?'
- NG (nasogastric) tubes: help when you're ill
- NG tubes - the view of Alex, aged 12
- Alex's NG tip
CGD, eating and diet
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.
I don't want to get fat!
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.
I'm worried I'm not as tall as my friends
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 than your friends and you will catch up with them eventually.
Steroids and my height and growth
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').
Should I take vitamins?
You might like to take a standard vitamin and mineral supplement as it can be harder for someone with CGD to absorb all the nutrients from their diet. A one-a-day vitamin and mineral supplement is all you will need – it's not a good idea to take large amounts of any vitamin or mineral supplement, as they can be harmful. Ask your doctor or pharmacist for further advice.
NG (nasogastric) tubes: help when you're ill
Some people do find it difficult to keep up their weight when they are ill and are conscious about how thin they are. It is possible to have a short period of being fed by nasogastric (NG) tube, whether you are in hospital or at home. A fine tube goes through the nose into the stomach and a special high calorie liquid food containing all of the necessary nutrients can be given to you easily through a pump overnight.
The view of Alex, aged 12:
‘When I was told that I was going to have an NG Tube put in I was not very pleased.The nurse put the tube in, and for about a week it felt strange, the first couple of days;l were the worst (it felt like raw spaghetti in my throat) but I soon got used to it.The thing I was mostly worried about was my appearance and what people would think of me, but sometimes I forgot it was there. For the first month of the tube being in I felt out of place. I remembered me covering my face with my hands and making it look as if I was coughing, soon though I decided to forget about hiding away so I went out more and I did not cover my face as much.Every month I had to have a new NG tube put in, and the first time this was done I was very worried. I expected the worst but because I had got used to the old tube it did not feel like raw spaghetti, the only thing that was unusual was the tube going into my nose, it made my eyes water. It works much better if you drink some water when they put the tube in.The reason the tube is in though is to feed me overnight with a high calorie fluid.There is a tube which is attached to a pump and then the pump pumps the fluid through the tube and into my stomach. It is a bit uncomfortable and you can only really lie on one side, but you just have to cope. When I started the NG tube feeding I weighed 25 kg and after 5 months approximately of being fed on the tube I am now 35.5 kg. The best thing about the tube though is it takes off the pressure of having to eat lots, but you still must eat. One last thing is that when you have had an overnight feed you will probably not be hungry in the morning so don't worry about that.’
Written by Alex, age 12
Alex's NG tip:
‘Make sure that the tube is long enough so that the end can be taped behind your ear. It's much more comfortable. There are also some special tubes which can be inserted directly into the stomach wall through a tiny hole (called a 'gastrostomy'). This tube can stay in place for a long time without being changed and can be kept hidden under clothes. At first the idea is a bit off-putting, but people get used to it quickly and usually it makes you feel much better and more energetic. Once you put on some weight and your body is getting better nourishment, your growth will probably start to improve too. There are some liquid diets being made now that taste much better and can be drunk without a need for a tube.’
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