Thanks
Chaitali

This person raises a very valid point….I agree, energy dense foods (e.g. cheese, yoghurts, milkshakes with added ice-cream and milk powder, extra oils, margarines/butter, avocado, dried fruit, nuts, chips etc) are great way of adding calories to meet the higher energy needs of people with CF. These foods are also a great way of ensuring a balanced diet.

As a dietitian you need to keep in mind that the eating habits, behaviours and preferences, as well as the nutrition needs and goals of people with CF will affect what they choose to eat. At every consultation, a cystic fibrosis dietitian will assess the patient’s diet history and asses it for nutritional adequacy before making dietary recommendations. If I identify a nutritional problem during a consultation I then work with the child and their family, in equal partnership, to develop a plan that meets the child’s nutritional goals. Takeaway foods (e.g. McDonalds or Hungry Jacks) are often suggested by families as being an easy and manageable way to increase energy intake.

How I work as dietitian has changed a lot over the last eight years. When I first graduated I was optimistic that I could get everyone to follow the perfect diet. In practice, influencing dietary and other behaviour change is very difficult – people are reluctant to change. Partnering to find solutions becomes particularly important. This is where my passion for chronic condition self-management started.

Thanks for the detailed and super rapid reply, Nicole. I felt absolutely obligated to follow up a little and amongst others found this article that details what I presume are the differences between the Boston and Toronto sample groups that you mention:

http://europepmc.org/articles/PMC1291914/pdf/jrsocmed00142-0014.pdf

It details that the Toronto group who “were encouraged to eat larger portions than their peers; to add fat in the form of butter or untrimmed meat, and to have high calorie snacks between meals and before bed.” had improved survival rates over the Boston group who were fed a ” a low-fat, carbohydrate-rich diet”.

Your CVD prediction does seem a bit sadly ironic but it will be interesting to see whether it is in fact the case, considering there is a growing divergence from the generally assumed connection between high fat (not including processed oils in that) diets and CVD, notable in examples like Sweden’s adoption of LCHF dietary guidelines.

Anyway, thanks for your time. I actually didn’t know a lot about cystic fibrosis until today so this has been educational and interesting.

Hi Nick,
It’s great to see so much interest in cystic fibrosis nutrition. Many dietitian’s promote what we call the cystic fibrosis food cube – i.e. eat lots of everything including fats and sugar!!! The reason for this is that we know that, at the population level, higher body mass index in individuals with cystic fibrosis equates to much better health outcomes and a longer life. In 1988, there was a landmark cystic fibrosis nutrition study completed at the Boston and Toronto clinics. The major difference between these centres practices was that the Toronto clinic promoted a high fat diet, whereas the Boston clinic promoted a low fat diet to prevent gastrointestinal symptoms (standard practice at the time). Median age of survival of patients attending the Toronto clinic was 30 years old versus the Boston clinic 21 years old. The results of this study started the promotion of the high fat CF diet.

As you can expect, with treatment advances the life expectancy of individuals with cystic fibrosis continues to increase (recent publications suggest that individuals diagnosed today have a good chance of living into their 50s and beyond). Many of my dietetic colleagues and I predict that with this increasing life expectancy that individuals with cystic fibrosis may start experiencing lifestyle related complications – e.g. cardiovascular disease (currently not seen in the cystic fibrosis population). In my article I mention that a Mediterranean style diet may help reduce inflammation and promote longevity, but we also know that staple fat in the Mediterranean diet (Olive Oil 60-80% mono-unsaturated/omega-9 fatty acids) also helps to prevent against heart disease. So, the type of fat we promote as cystic fibrosis is likely to become increasingly important.

I hope that this answers your question.

I was one of those that retweeted a question posted about using McDonalds, and for me the reason it initially raised eyebrows was that “extra McDonalds” was quite a vague statement as not only do McDonalds now have quite a range of foods, but each meal has multiple components which go beyond just being high fat and salt (e.g. many are also high in sugar).

Presuming that you mean McDonalds beef burgers; do you use that option as a pragmatic choice likely familiar to the kids you deal with and fairly likely to be accepted and eaten? If so, does the type of fat you need these kids to consume matter (e.g. omega 6, omega 3, saturated, monounsaturated, etc) and is that a reason you would suggest e.g. a beef burger?

Individuals with cystic fibrosis require more energy from food (120-150% more than the average person) to maintain their weight and to be healthy. This is due to their increased work of breathing and malabsorption. Also, cystic fibrosis is a condition that affects the movement of salt in and out of cells. Individuals with cystic fibrosis lose up to 6 times more salt than people without the condition.

McDonalds is a great source of energy (high fat = maximum energy) and salt. But, importantly, McDonalds needs to be included as part of a balanced cystic fibrosis diet that also includes wholegrain cereal products, dairy, fruit, vegetables, meat and healthy sources of fat.

Please let me know if there are any other questions you would like answered – always happy to help.