People with CGD have specific dietary needs because of their condition
We all want to know how to stay fit and healthy, and this is especially important if you have CGD.
Your condition means you are more inclined to get ill and so self-care - looking after yourself - is vital.
Alongside taking your preventative medication every day, there are key ways in which you can help to keep yourself generally well. This will help you avoid infection and get better more quickly when you are unwell.
People with CGD have specific dietary needs because of their condition, mainly related to the ability to keep weight on.
They tend to use up their energy quicker than other people and therefore require a bit more 'fuel'. Also, they tend not to absorb the goodness from food that effectively, and find that much of the energy is used by the body to fight off infection. As a result, children and young adults may grow more slowly and not be as tall as people of the same age, and in adults maintenance of a healthy weight can be the issue.
Another factor affecting diet and CGD is steroid use. Steroids, which are used to calm inflammatory infections if taken over a long time, can also slow down growth, making some people with CGD shorter than people of the same age (if you are 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 because you or your child are not growing, talk to your doctor about it or ring the CGD nurse. They will be able to reassure you and 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 (an 'endocrinologist’).
The best diet for anyone, regardless of whether they have CGD or not, is a healthy diet. That means including a variety of different types of food in our diets, including at least five portions of fruit and vegetables each day. This doesn't mean that burgers and pizzas are out of bounds, just that they should be part of a 'balanced' diet where the emphasis is on healthy, nutritious foods. Below is some advice on how to eat when you or your child has CGD.
CGD and how to eat
Eat healthy high-calorie foods. Some people with CGD find it is difficult to maintain their weight and for children this can mean they are slow to grow. For these people, a few additional calories are required. 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. These usually come in the form of milkshake-type (or fruit flavour) drinks and are prescribed by a doctor or dietician.
Eat a little and often. It may sometimes be the case that while you know that you or your child need to eat more, you only have a small appetite. In these cases, it's probably better to eat small, frequent meals rather than try and persuade yourself to eat one large meal
Don't skip meals. Try to have three small, manageable meals a day plus snacks, such as plain biscuits, milky drinks, fruit or yoghurt at 'coffee time', 'teatime' and bedtime
Don't overload the plate. Making meals presentable and not overloading the plate - especially where children are concerned - can make eating more appealing. Also, remember to praise children for eating what they manage to eat. Remember that children with CGD have small appetites and may feel they are eating as much as they can.
'Disguise' extra calories. Putting butter and cheese into meals can be useful ways of packing in the calories without children realising they are eating them. Also, remember that little 'treats' can be useful sources of extra calories.
A little help. 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 NG (nasogastric) tube, whether in hospital or at home. A fine tube goes through the nose into the stomach and a special high calorie liquid food containing all the necessary nutrients can be given to you easily through a pump overnight.
Consider vitamins. Both adults and children with CGD are likely to benefit from a standard vitamin and mineral supplement as it may be harder for them to absorb all their nutrients from their diet. A one-a-day multi-vitamin and mineral supplement is adequate and it's advisable to avoid taking large amounts of any one vitamin or mineral supplement. Take advice from your doctor or pharmacist.
Seek advice. If you have concerns about your/your child's diet or weight, talk to your doctor or nurse. You can ask to be referred to a dietician.
When they are in hospital for long-term treatment, patients quite often find they lose their appetite. This sometimes means they need extra nutrition, which can be taken in the form of milkshake drinks or given via a special feeding tube in the nose or stomach. Very occasionally patients may need to be fed intravenously through a central line for a short time.
It can be hard for someone with CGD to absorb all the nutrients they need from their diet, so it may be a good idea to take a standard vitamin and mineral supplement each day. Some people find that iron doesn't agree with them (it can cause upset stomach, constipation and heartburn) so you might like to find one that doesn't contain iron or contains a form of 'gentle' iron to help avoid these side-effects. 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 or may interact with prescribed medicine. Ask your doctor or pharmacist.
Taking regular exercise helps to keep you fit, boosts your immune system and releases natural 'feel-good' endorphins into your brain to increase feelings of wellbeing. However, many people with CGD tire easily and have lower energy levels than other people, so exercise needs to be planned accordingly. Remember, exercise doesn't have to be anything heroic and it needn't involve expensive gym fees.
Activities to consider include:
- Basketball, volleyball or netball
- Swimming (in clean, chlorinated pools)
- Badminton or tennis
- Dance, yoga or other 'keep fit' classes. Pick up local information at the library
- Using a Wii or X-Box fitness programme at home
- Walking (whether down the road, to the shops or taking the dog for a walk)
Build your exercise up regularly and adjust it to suit you. Don't aim to do too much too often or you will either feel exhausted or find that you can't keep up with your exercise plan. This in turn won't help with your motivation. A better idea is taking it up more gently and doing a 'little and often'. A short walk each day or using a dance game with friends at home may be more your type of exercise than running around a football pitch, especially if you are recovering from a bout of illness. People with breathing problems or who are generally unwell may benefit from seeing a physiotherapist who can develop an appropriate exercise regime to target specific problems and benefit general health. Talk to your doctor about this.
Rest is vital for everyone, but when you have CGD it is even more important. If you don't rest, you run the risk of getting run down, catching infections and not being able to fight them off. You may find there are days when you feel generally weary, and some people find they have achy legs or joints from time to time. It may be tempting to plough through these times, but your body is tired and it's trying to tell you this - so listen to it!
Allow yourself to have a lazy day/'duvet day' or an early night every now and again, or do something restful or relaxing just to recharge. It's OK to feel tired (and understandable, given how CGD can affect you), so if you feel like taking to the sofa for the day, let yourself do it. Watch a favourite video, read magazines, eat some favourite foods - in other words, enjoy indulging yourself! That way taking some rest won't feel like a chore. In fact, you'll feel better for it.
No smoking or using marijuana
Smoking lowers your immunity and damages your lungs, so if you smoke you are likely to get more infections, particularly chest infections. You could also develop long-term problems with your chest and breathing.
If you suffer from bowel inflammation and you smoke, you are likely to be unwell, have more flare-ups and will need more medicines to treat your symptoms.
Smoking is harmful to bones, too, which could lead to weak bones later in life.
Smoking marijuana (‘pot’, ‘weed’, ‘dope’) can be particularly hazardous for people with CGD. This is because it contains a fungus which is inhaled straight into the lungs when you smoke it.
For help with giving up smoking, log on to the NHS website www.givingupsmoking.co.uk or phone the NHS Smoking Helpl.ine on 0800 169 0169 or talk to your GP.
This page has not yet been reviewed by our Medical Advisory Panel.