Around 1 in 100 people in the UK have coeliac disease, when a person’s immune response to gluten attacks the tissues in their digestive system. Many are not diagnosed and untreated patients have an increased risk of anaemia, osteoporosis and cancer. The only treatment available is a gluten free diet.
Diagnosing coeliac disease can be difficult. Some patients may not have symptoms, while others have non-specific symptoms such as indigestion or bloating. It’s thought only one in three people with coeliac disease are actually diagnosed.
Guidelines recommend that adults and children “at high risk” of coeliac disease should be offered testing. However, it is not clear which groups are at high enough risk to justify routine testing, which symptoms should lead to testing, which tests should be offered, and whether a biopsy (taking a small tissue sample) to confirm the diagnosis is necessary.
This project will investigate the best testing strategy for identifying adults and children with coeliac disease, that is both cost-effective and acceptable to patients.
We want to establish who should be tested for coeliac disease, what tests should be offered, and whether a biopsy is necessary for all patients.
Our project has five parts, to:
In the first part of the project, we searched for studies on coeliac disease testing. The team reviewed and analysed the results from 191 studies, identifying 26 signs, symptoms and risk factors to focus on.
We found strong evidence that people with family history of coeliac disease, dermatitis herpetiformis (a skin condition caused by a reaction to gluten ingestion), anaemia, type 1 diabetes, migraines, HLA DQ2/8 risk genotype, osteoporosis, or chronic liver disease are more than twice as likely to have coeliac disease than the general population. Additionally, close relatives of people with coeliac disease are three times as likely to have it themselves. These signs and symptoms could therefore help identify patients who would benefit from testing.
Migraine and chronic liver disease are not yet included as a risk factor in all guidelines. We suggest it may be appropriate for these to be added to guidelines.
Other signs including gastrointestinal symptoms (such as diarrhoea, constipation and abdominal pain), psoriasis, epilepsy, inflammatory bowel disease, systemic lupus erythematosus, fractures, type 2 diabetes and multiple sclerosis were not shown to be reliable indicators of the disease.
We expect the results of this study to change the way patients with coeliac disease are identified in the UK.
The new testing strategy developed through this work has the potential to increase the number of people being diagnosed, speed up the process of diagnosis and improve patient outcomes.
This project builds on this previous work.
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