Nutrition for adults with Cystic Fibrosis
* published in CF Trust (UK) website.
A suitable diet is essential for adults with cystic fibrosis. A healthy, well-nourished body can deal more effectively with chest infections or weight loss caused by illness.
Because adults with cystic fibrosis have higher energy needs, it is important that you have a high energy and protein intake. This is especially true if you have frequent chest infections or are losing a lot of fat in your stools.
Protein intake should be as much as twice the regular recommended adult amount; your dietitian will advise you.
It is also important to have a balance between sugary or fatty, energy rich foods and foods that contain protein, vitamins and minerals.
While you don’t need to avoid any particular foods, people with cystic fibrosis should eat plenty of:
- Fatty foods – butter, ice cream, chocolate
- Sugary foods – jam, puddings, sweets
- Milk and dairy products – cheese, yoghurts
- Starchy foods – pasta, rice, bread
- Protein foods – fish, eggs, meat
- Vitamin/mineral-rich foods – fruit, vegetables
Fat is one of the most concentrated forms of energy, so fatty foods are the best way to increase your energy intake. If you have problems tolerating fat or certain foods that upset you, changing your pancreatic enzymes could be the solution.
If you don’t like the taste of foods like butter, chocolate and fried foods, you can use alternatives that are high in energy but taste less fatty, such as nuts, biscuits, cakes and oily fish, which. This is particularly relevant if you have spent years on a low fat diet, like the people old enough to remember a fat-free diet in the 1970s and ’80s.
Around 85% or more of people with cystic fibrosis have insufficient pancreatic function and need to take pancreatic enzymes to help their digestion. Different enzymes suit different people, so if you have any questions about type or dosage you should consult your doctor. You should only stop taking enzymes on the advice of your doctor; otherwise you run the risk of bowel blockage, which would require hospital treatment.
Vegetarian or vegan diet
While both vegetarian and vegan diets can contain the essential nutrients, they are restrictive in what they allow which can make it difficult to sustain a high energy intake.
Strict vegan diets are not advisable for adults with cystic fibrosis because they are particularly low in energy and can be bulky or filling.
A high-energy vegetarian diet is possible with expert help. You should consult your doctor or dietitian if you are or feel strongly about becoming vegetarian.
Vitamin A, D, E and K supplements must be taken regularly, and are available in the form of a prescribed multivitamin supplement. Without supplements, the levels of vitamins in your blood can fall and there is a risk of deficiency. Your supplement may change when you first attend an adult clinic because supplements differ for children and adults.
Keeping your weight at a reasonable level can be hard, especially if you suffer from chest infections, but there are a few things that may help:
- Only actively try to gain weight when you are well – chest infections use extra energy, so concentrate on maintaining your weight during illness
- Eat regularly – an erratic diet can reduce your average energy intake
- Try to have a high energy drink before bed
- Avoid replacing food with high energy drinks
- Increase the energy content of your food
- Don’t rely on prescribable supplements like high energy drinks and glucose polymers to increase your weight
- Consult your doctor or dietician if you are having trouble maintaining your weight
Poor appetite and weight loss are often the first signs of a chest infection. Appetite may be slow to return, but you should try to keep up a high energy diet regardless. We have a few suggestions that may help:
- Abandon large meals if they are too filling – snacks can contain just as much energy
- Try to have a snack or high energy drink every two hours
- Consume energy in liquid form when you are unwell – high energy drinks may be more palatable than food
- If you can’t make your own drinks, you may want to try prescribable supplements like glucose powder, liquid glucose or high energy drinks
In the case of extreme weight loss, tube feeding may be an option to ensure you keep up a high energy intake. There are two types of tube feeding:
- Nasogastric (a tube inserted into the nose)
- Gastrostomy (a tube directly into the stomach)
The type of tube will depend on your personal choice and needs and the policy of your treatment centre. If the treatment is going to last for more than a few weeks a gastrostomy tube is probably the best option; it is hidden from view and can’t be dislodged or coughed out during physiotherapy.
Consult your doctor or dietitian to find out more.