Although awareness of the symptoms of coeliac disease is increasing, both among GPs and their patients, a significant number of cases are still misdiagnosed. The problem is that many of the symptoms of coeliac disease are shared with other common gastrointestinal complaints, such as IBS. As a result, coeliac disease can often be mis-diagnosed for many years before a correct diagnosis is finally made.

Glutafin’s sister company, Schar, recently conducted extensive research, involving over 13,500 people, to try to understand how often the symptoms of coeliac disease are misdiagnosed, and explore some of the reasons why this happens.

The research covered a number of European countries, including France, Spain, Germany and Italy, as well as the United States of America and over 3,000 people from the United Kingdom. The findings illustrate how hard it can be to get an accurate diagnosis when you have symptoms of coeliac disease.

Misdiagnosis of coeliac disease

Misdiagnosis is a major problem in the field of coeliac disease, as GPs and other health professionals mistakenly assume that other conditions are responsible. As many as one in five people (20%) reported being diagnosed with anaemia, iron deficiency, allergies or gastrointestinal issues in response to their symptoms of coeliac disease. A further one in seven (14%) were diagnosed as having IBS, which rose to 1 in 5 (21%) in the UK. 

Other respondents reported that their symptoms of coeliac disease were confused with conditions such as gastritis (12%) food intolerance (such as lactose) (11%) and gastric infections (7%).

Awareness and attitudes to coeliac disease

One of the issues behind misdiagnosis is a lack of awareness of the symptoms of coeliac disease. Only 39% of respondents agreed that their doctor was very knowledgeable about the symptoms of coeliac disease, and only one in four people (26%) of people reported that their doctor immediately recognised the symptoms of coeliac disease. 

46% felt that their concerns were not taken seriously. This inevitably leads to misdiagnosis and unnecessary testing, which causes stress for 45% of patients. 

How is coeliac disease discovered?

Misdiagnosis isn’t the only issue. The research shows that 14% of people who were ultimately diagnosed had no symptoms of coeliac disease at all. 

In three quarters of these cases, their condition was discovered through tests or screening for another condition, or from general blood tests or check-ups. 16% of people were tested for coeliac disease due to a family member having the condition, while a further 6% were only tested following a diagnosis of diabetes.

Why it is important to get tested for coeliac disease?

The results of this wide-ranging study show just how important it is to educate yourself about the symptoms of coeliac disease, and to ask your doctor to arrange for you to be tested if you think you may have the condition. Earlier testing would help to avoid you being misdiagnosed with conditions with similar symptoms, such as IBS.

Getting a formal diagnosis of coeliac disease means you can get relief from the symptoms sooner by switching to a gluten free diet. A formal diagnosis also gives you access to gluten free food on prescription (provision varies between home nations and within local NHS Integrated Care Boards in England). 

You’ll find a wealth of information on the symptoms of coeliac disease and getting tested for coeliac disease on our website, plus there is lots more help available at Coeliac UK and on the NHS website. So if you suspect that you may have coeliac disease, check out these sites and talk to your doctor about your concerns as soon as you can, so you can start to heal your gut and feel better by following a gluten free diet.

Share this now: