A study, led by experts at the University of Nottingham, has found that persistent and painful upper bowel symptoms experienced by people with Ehlers-Danlos hypermobility syndrome (hEDS) are not due to structural problems with the esophagus (esophagus), as previously thought.
The research findings, which are published in Clinical Gastroenterology and Hepatology (American Gastroenterological Association), offer a clearer explanation and a new direction for the care of this complex and often misunderstood condition.
The study was led by Dr Mohsin Butt from the University of Nottingham School of Medicine, in collaboration with colleagues from Queen Mary University of London and University College London.
Ehlers-Danlos syndromes (EDS) are a group of 13 inherited genetic disorders that weaken connective tissues, affecting joints, skin and blood vessels. Key symptoms include hyperactive (overly flexible) joints, chronic pain, excessive fatigue, and fragile, elastic skin.
Gastrointestinal symptoms are common in EDS, particularly hEDS, affecting over 50% of patients. Key symptoms include nausea, difficulty swallowing, acid reflux, bloating, constipation, diarrhea and chronic abdominal pain. Until now, upper gut symptoms (difficulty swallowing and acid reflux) were thought to reflect physical problems with the organ – how it moves (motility) or handles acid. However, this new research reveals a different story.
The research found that despite a high burden of bowel symptoms, patients with hEDS were no more likely than people without hEDS to have abnormal bowel movements or measurable acid reflux when tested. In fact, most people had normal results.
I have been interested in hEDS since medical school and have long been struck by the burden of bowel symptoms in these patients. So, what is behind these painful upper intestinal symptoms? Our findings suggest that the answer may lie in the brain-gut connection.
Patients with hEDS appear to have increased sensitivity and altered signaling between the gut and the brain, rather than structural abnormalities detected in standard tests. Importantly, these symptoms are real and can have a detrimental effect on quality of life. Our findings highlight the need for an integrated, biopsychosocial approach to care.”
Dr Mohsin Butt, lead author of the study, School of Medicine, University of Nottingham
