The fourth session of the patient symposium was led by Dr R Howard from Birmingham, a clinical psychologist – and also mother to a coeliac teenager. It’s always nice to hear from people who understand the gluten free lifestyle at first hand!
She discussed the psycho-social issues around being diagnosed with a long-term condition, managing the diet, and dealing with undiagnosed symptoms. Here in the UK, it can take up to 13 years before getting a diagnosis, after numerous consultations. We were lucky that our family doctor considered coeliac disease from the outset. Not every doctor has this at the top of mind, because – as we all know – it can present in a wide range of different ways.
We need better diagnosis, for which we need a better education for our family doctors (who can’t, after all, know everything about everything: it wouldn’t be humanly possible). I was impressed to hear the third speaker (Professor Anderson) tell us that AstraZeneca put on a nationwide training programme on coeliac disease for GPs in Australia – and that 50% of family doctors (GPs) have done this training now.
Dr Howard discussed quality of life issues (QoL). Apparently, although there is initially a vast improvement in the quality of life in the first year after diagnosis – as reported by patients – after that, there is a steady decline in reported QoL in adults and adolescents aged 8-16, quite possibly due to poor self-management.
The issue appears to be that in some cases (especially for women) suffering a chronic condition increases anxiety and depression. Once diagnosed and on a gluten free diet, the level of anxiety decreases. However, if people find it difficult to maintain the diet, especially outside the home, then this can lead to increased anxiety, leading to the coeliac trap:
feeling unwell – diagnosis – gluten free diet – anxiety – poor self-management – feeling unwell …
Not surprisingly, parents of coeliacs also report increased anxiety, and a study found that children report more problems of distress and impact on their lives than parents are aware of. (Learning that could be the cause of even more parental anxiety!)
A key factor in achieving a good QoL is believing in one’s own ability to manage the diet. If you understand the issues and know how to manage the diet, you are likely to have a better QoL.
She suggested that counselling might help those people who struggle at managing the diet, in an attempt to break the cycle. If this is you, then don’t be shy of reporting this to your medical professionals; they may be able to help, and this might improve matters for you in the long term.
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…