We work hard to keep coeliac disease and dermatitis herpetiformis on the agenda and there are some key issues facing our community at present. While there are still many goals to acheive, we have had many successes on behalf of those with the condition. These include getting gluten-free onto menus of well known high street chains so that those with the condition can eat out with choice, discovering more about the genetics of coeliac disease and much more.
With 1 in 100 people with the condition but only 24% of these diagnosed, we estimate there are nearly half a million people in the UK who have coeliac disease but don’t know. We want to find these people.
The average time from the onset of symptoms to a coeliac disease diagnosis is currently 13 years. This is too long and we’re working with healthcare professionals and policy makers to improve this and prevent years of ill health due to late diagnosis of coeliac disease.
Once you have that diagnosis, access to care should be uniform and ensure that you are successfully managing the gluten-free diet and risk of complications. Without guidelines for healthcare professionals to follow, management of coeliac disease patients can be a postcode lottery and we are working on changing this.
With the NHS making cuts and clawing back budgets we have seen some areas remove some levels of gluten-free prescribing. We strongly believe that there should be equal access to gluten-free staple foods on prescription for people with coeliac disease and that this should stay within the NHS. We are working hard to ensure that the views and needs of people with coeliac disease are represented whilst offering an alternative scheme that saves GP time and NHS budget.
Access to gluten-free food
No matter where you live, you should be able to access a range of gluten-free food at a reasonable price. We are working to make sure that those with the power to make this happen are aware of what people with coeliac disease need.
Managing your gluten-free lifestyle
Everyone should be able to eat out and enjoy choice, whether you have coeliac disease or not. We’re making the case to caterers and restaurateurs that they should cater for your diet and do it well so you can eat out safely whether for pleasure or through need.