Monday 10 May 2021 sees the start of Coeliac Awareness Week, led by Coeliac UK, with the message ‘#ShineALightOnCoeliac’.
As part of this, our Engagement Officer Helen Brown, shares her experiences of Coeliac disease, since being recently diagnosed with the condition.
Helen says “I was diagnosed with coeliac disease only a few months before the start of the Covid-19 pandemic after several months of suffering gastro-intestinal symptoms. This year I am writing about my experience to play a part in raising awareness of the condition, as Coeliac UK estimates that around half a million people in the UK are living with undiagnosed coeliac disease.
“Coeliac disease is a condition where the body’s immune system attacks its own tissues when you eat gluten. This causes damage to the lining of the gut and means the body cannot properly absorb nutrients. Coeliac UK estimates that it takes an average of 13 years for diagnosis as symptoms are so wide-ranging and are similar to other conditions such as IBS. I count myself lucky that my GP was proactive in requesting blood tests; I know the outcome for others is not as positive.
“After diagnosis I was told the only treatment for the disease is to adhere to a life-long gluten free diet, but I did not realise exactly what this entailed. It is not just a case that ‘you can’t eat bread or cakes’ as a friend so delicately put it. As well as substituting breads, flours, pasta and sweet treats for gluten free counterparts (many of which do not taste that great!) gluten is an unexpected ingredient in so many foods from sauces to soups to crisps and chocolate. There is also the worry of cross-contamination when preparing food including a need for separate butters and toasters at home.
“These things, alongside the reduced enjoyment of eating out/getting takeaways – no longer having the ability to be spontaneous when choosing venues, having substandard/limited food choices, feeling anxious about possible cross-contamination, or having to explain your condition to restaurant staff you have never met – made the first several months after my diagnosis quite an unhappy time.
“As time has gone on and my symptoms have improved, managing my condition has got easier. My gastroenterologist and dietician have been great and lockdown in some ways has helped as we have had significantly more time to experiment with cooking and baking gluten free recipes at home and the choice to eat out has been vastly reduced.”
Ceoliac UK’s #ShineALightOnCoeliac campaign this year recognises the issues Helen talks about. The chance to get together with family and friends makes summer seem brighter but for many people with coeliac disease, particularly children and young people, trusting others to provide gluten free food can cause feelings of worry and exclusion.
Further information on the campaign can be found at CoeliacUK. Alongside activities and awareness raising there’s also lots of support and information for the gluten free community and an online tool to encourage diagnosis.
If you have coeliac disease and would like to share your experience of healthcare services in the diagnosis and management of your condition, please get in touch.