I don’t mean to worry you – and I’m not going to worry about this myself – but I think it is better to know these things in advance.
People diagnosed with celiac disease as children are more likely to die younger.
A long-term study by doctors at the University of Nottingham (read it at Medscape – I found it at celiac-disease.org) indicates that children diagnosed with celiac disease have a threefold increased risk of longterm mortality, in contrast with adults diagnosed with the disease, where the long-term increase of mortality is small.
Obviously everybody’s individual risk of mortality is 100% – we are all going to die sometime. What the study shows is that these children are more likely to die early.
The study identified celiacs in 1979, and tracked them until death or the end of 2004 (a few were lost to the study due to emigration or other movement), and the causes of any deaths in that time were analysed.
You will know that some of us are expected to die each year from a variety of causes – insurance companies study this very carefully to manage their risks, and make money by getting this right.
The study found that the rate of death was higher than expected for everyone in the study group – just a bit higher for the adults, but significantly higher for the children.
The doctors found that the “excess mortality” – extra deaths – for those people diagnosed as adults was mostly due to gastrointestinal cancers or lymphomas. For those diagnosed as children the extra deaths were due to accident, suicide and violence – as well as malignancies. They also found that the extra deaths from lymphomas increased after 25 years – and increased more for the children than for the adults.
Now, these are extra deaths – obviously some children are lost to death by accident, suicide and violence every year anyway – but celiac children are more likely to die in this way.
So what on earth is causing these children to die early?
There are a few suggestions based on other studies:
- children with chronic diseases are more likely to be risk takers than healthy children
- untreated celiac disease is associated with psychiatric problems; perhaps these children are not adhering strictly to the diet
- some people – a very few – do not respond to dietary treatment; these people are more likely to be at risk of malignancies and depression
- adults established on a gluten free diet tend to have a poorer quality of life than the general population or other people with chronic diseases
Overall, the doctors think this increased risk may reflect behavioural changes associated with coping with chronic disease and its treatment.
There is some good news: this study, like other studies, found that there is a reduced risk of breast cancer in women with celiac disease.
However, the increased risk to our celiac children of death from accident, suicide and violence is – as the doctors say – a cause for concern.
What can we do to help our children?
- don’t panic. While this study seems valid, thorough and important, we don’t know all the factors affecting the children in this study, and this group of people were identified in 1979 – things have changed, in that there is a wider range of foods available and more understanding of the disease in the wider community, making it easier to live gluten free these days.
- keep them gluten free – don’t let them increase their risk of malignancies, depression by cheating on the diet. It is important that celiac children should live gluten free, and avoid all the known dangers of undiagnosed or untreated celiac disease.
- keep a watchful eye on their risk-taking tendencies – but you’d be doing that anyway, wouldn’t you? Not a worry in this house, where my coeliac is very risk-averse, and isn’t at all likely to take up base-jumping.
- and give them every opportunity to develop independence, so that they can assess the level of risk for themselves in the future.
I’ve written a book summarising what we’ve learnt over 20 years of dealing with the gluten free diet, and it might be just what you’re looking for. It packs the lessons we’ve learned into what I hope is a helpful and straightforward guidebook. It’s available on Amazon, as a paperback or for your Kindle…