Gut-brain axis, not structural issue with gullet, may cause upper gut symptoms in hypermobile Ehlers-Danlos

A study led by experts at the University of Nottingham, in collaboration with colleagues at Queen Mary University of London and University College London, has found that persistent and distressing upper gut symptoms experienced by people with hypermobile Ehlers-Danlos syndrome (hEDS) are not due to structural problems with the gullet (oesophagus) as previously assumed.

The findings of the research, published in Clinical Gastroenterology and Hepatology (American Gastroenterological Association), offer a clearer explanation and a new direction for care for this complex and frequently misunderstood condition.

Gastrointestinal symptoms are common in EDS, particularly hEDS, affecting over 50% of patients. Until now, upper gut symptoms (difficulty swallowing and acid reflux) were thought to reflect physical problems with the gullet — how it moves (motility) or handles acid. However, this new research reveals a different story.

The research found that despite a high burden of gut symptoms, patients with hEDS were no more likely than people without hEDS to have abnormal gullet motility or measurable acid reflux when tested. In fact, most individuals had normal results.

Dr Mohsin Butt, the lead author of the study, said: “Patients with hEDS appear to have heightened sensitivity and altered signalling between the gut and the brain, rather than structural abnormalities detectable on standard tests. Importantly, these symptoms are real and can have a detrimental effect on quality of life. Our findings highlight the need for a comprehensive, biopsychosocial approach to care.”