Eating challenges common among women with self-reported EDS
Survey links digestive symptoms with pain, fear, and food avoidance
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Women with self-reported Ehlers-Danlos syndrome (EDS), many with the hypermobile form, commonly reported digestive symptoms and altered eating behaviors, with more than one-third considered at risk of having an eating disorder, a study found.
Many participants reported food allergies, painful or fearful eating, and digestive symptoms, while some also reported histories of eating disorders such as anorexia and bulimia, suggesting possible links among EDS-related symptoms, eating experiences, and body image. Anorexia nervosa is marked by abnormally low body weight, intense fear of putting on weight, and an impaired perception of weight or shape; bulimia nervosa is characterized by episodes of binge-eating and a feeling of lack of control over eating.
EDS symptoms may affect eating experiences
The researchers wrote that “clinicians should be aware of the overlap between hEDS and [eating disorders], particularly in the case of the most severe, functionally impairing and life-threatening [eating disorders] such as anorexia nervosa.”
The study, “Insights in altered eating behaviors in women with Ehlers-Danlos syndromes,” was published in Eating and Weight Disorders – Studies on Anorexia, Bulimia and Obesity.
EDS is a group of connective tissue disorders that can cause symptoms such as stretchy and fragile skin, joints that move beyond the normal range, and frequent joint dislocations.
People with EDS, particularly hypermobile EDS, commonly face gastrointestinal problems, including altered bowel function, difficulty swallowing, and food allergies or intolerances. These issues may be linked to altered eating behaviors and eating disorder risk in some people, with recent studies reporting a high prevalence of self-reported eating disorders in people with EDS.
“In our view and clinical experience, with its frequent comorbid GI [gastrointestinal] problems and other symptoms globally affecting the act of eating, hEDS represents a potential fertile ground for the development of altered eating behaviors and even [eating disorders],” the investigators wrote. “In addition, [food allergies/intolerances] as well as GI symptoms such as dysphagia [difficulty swallowing] and abdominal pain arguably make the eating experience less safe, less pleasant and less satisfactory.”
To better understand the association between digestive symptoms, eating disorders, and body composition, researchers conducted an observational cross-sectional study involving 121 adult women with a self-reported diagnosis of EDS who completed an online survey after being recruited through the Spanish National EDS Patient Association. Participants had a mean age of 40.2 years, and most were living with a partner.
Many report digestive symptoms, eating concerns
A total of 60.3% reported having hEDS, and 62% had a normal body mass index (BMI), a measure based on weight and height. About half reported food allergies (51.2%). Participants also self-reported histories of obesity (21.5%), anorexia (15.7%), and bulimia (12.4%).
Based on SCOFF scores, 36.4% of the participants were at risk of having an eating disorder. The mean total score on the Patient Assessment of Upper Gastrointestinal Disorders-Symptom Severity Index (PAGI-SYM), used to assess the severity of upper gastrointestinal symptoms, was 41.2. Among its six subscales, the highest score was related to heartburn symptoms.
Gastrointestinal problems were associated with somatosensory amplification — the tendency to perceive normal bodily sensations as unusually intense or disturbing — oral pain, and painful and fearful eating. Fearful eating was associated with avoidant eating.
Food allergies were significantly associated with digestive issues and fearful eating, while digestive problems were linked to oral pain and painful eating. There were also significant associations between painful and fearful eating, and between fearful and avoidant eating behaviors. Higher body satisfaction was associated with lower restricted eating scores and a lower BMI.
“These results support the idea that certain somatic symptoms common in EDS would lead to fear and avoidant responses to food,” the researchers wrote. They also noted that “further research is needed to better understand the link and directionality between abnormal connective tissue and disordered eating behaviors.” The researchers noted that the study was cross-sectional, relatively small, and based on self-reported diagnoses, and that future studies should use stronger designs to clarify the timing and direction of these links.
