So whilst currently researching an article I’m writing (I will post details once it’s publish hopefully December time!) I came across an interesting fact from Coeliac UK.
According to a survey run by the charity in 2009 on 1,600 of it’s members, nearly 60% were previously diagnosed with IBS.
Other members were also previously diagnosed with anemia without testing for the cause (also nearly 60% of respondents) as well as anxiety or depression, chronic fatigue, ME, gallstones or even hypochondria.
Even worse, the survey highlighted that 23% of respondents had visited their GP for 11 years or more before finally being diagnosed. Nearly a third also said that they though their GP’s knowledge of coeliac disease was either poor or very poor.
So what can be done?
At the same time the survey was being launched, NICE (National Institute of Health and Clinical Excellence) issued a guideline on coeliac disease which, as a result, should see more people tested for the condition.
The guideline details on the recognition and diagnosis of coeliac diease, and also identifies some specific symptoms and associated problams such as Type 1 Diabetes.
Sarah Sleet, Chief Executive of Coeliac UK said: ‘It is too early to tell if the NICE guidelines are improving diagnosis rates but as a charity we are receiving around 1,000 new member requests a month from people who have just been diagnosed.”
She added:“In order to prevent years of misery for patients and needless waste of hard pressed NHS resources, we need a target for diagnosis of the disease in the Quality and Outcomes Framework (QOF) of the GP contract which has been recognised as an important lever in changing GP practice. The idea was recently rejected by NICE but if we do not see a significant improvement in the current rates of diagnosis, Coeliac UK will be pressing again for its inclusion.”
What did you think of your GP’s knowledge of Coeliac disease? How long were you waiting until you were diagnosed? If you have a story about your coeliac experience you want to share then please comment below or email on: [email protected]
There is, in my opinion, still a long way to go until proper diagnosis of coeliac disease is common. I myself was told my tests were not completely conclusive, though from my experience with eating gluten by accident since my diagnosis, I definitely have coeliac disease!
So share your stories too and I’ll definitely be looking further into this matter!