Gut issues often drive hEDS patients to restrict their diets
GI troubles can lead to eating high-fat, low-fiber foods that lack essential vitamins
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People living with hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorders (HDS) often follow dietary patterns that are high in protein and fat but low in calories, fiber, and essential vitamins. A new study from the U.K. suggests these restrictive eating habits, often driven by chronic digestive pain, may be leaving many patients malnourished and reliant on highly processed foods.
The study also identified four clinically distinct dietary patterns in hEDS/HSD, which, according to the investigators, do not seem to be associated with common coexisting disorders.
“Patients with either restrictive or highly processed food intake have more [gastrointestinal] symptoms. Further research is needed to establish how these dietary patterns can best be managed in clinical practice, to optimize intake and minimize the use of artificial nutrition support,” researchers wrote.
Addressing restrictive eating in EDS
Although more studies are needed to create evidence-based nutritional guidance, “it would be useful for patients to be screened for [avoidant restrictive food intake disorder] and ultra-processed food intake and to be offered safe and sensible advice on how to optimize their nutrient intake,” researchers wrote. Avoidant restrictive food intake disorder, or ARFID, is characterized by food restriction due to lack of interest, fear, or sensory issues.
The study, “Nutrient intake, dietary patterns and relationship to symptoms and comorbidities in hypermobile Ehlers-Danlos syndrome,” was published in Clinical Nutrition.
hEDS is the most common type of EDS, a group of connective tissue disorders that lead to symptoms such as joints that move beyond the normal range and frequent joint dislocations. HSD, which shares symptoms with hEDS, does not meet the same diagnostic criteria.
People with hEDS commonly have digestive issues, particularly associated with the gut-brain axis, the bidirectional communication between the digestive system and the brain. Yet little is known about dietary patterns and their relationship to clinical presentation.
To learn more, researchers in the U.K. analyzed data from 425 hEDS patients included in the CANDI-hEDS study, which stands for Comprehensive Assessment of Nutrition and Dietary Intake in hEDS. Participants had a mean age of 41 years and were mainly women (95.8%).
Symptoms of gut-brain axis disorders included functional dyspepsia (58.8%), which is chronic indigestion with frequent stomachaches and a feeling of fullness or bloating after eating. Other conditions identified were irritable bowel syndrome, functional dysphagia (difficulty swallowing), and functional nausea.
Most participants met the recommended protein and fat intake requirements. The intake of saturated fat exceeded recommendations in 88% of participants, whereas less than one quarter met the nutrient requirements for carbohydrates (21.2%) and fiber (24.7%).
About one-third met the nutritional requirements for calories, while more than 90% met the requirements for vitamins, except for vitamin D and, to a lesser extent, some B vitamins.
Participants diagnosed with ARFID (25.9%) were significantly less likely to meet their requirements for macro- and micronutrients, except for fat, carbohydrates, vitamin D, and vitamin B12.
Four distinct dietary patterns
Overall, the researchers identified four dietary patterns. The most common was low food intake (in 149 participants), mainly consisting of fruit, clear soups, white meat, fish, and caffeine-free drinks. This diet was associated with a higher likelihood of reporting digestive trouble, the highest risk of ARFID, and lower intake of fiber and most other nutrients. Most patients had a normal body mass index (a measure of body fat that takes into account weight and height) and were more likely to undergo a nutritional consultation.
The second most common dietary pattern, observed in 121 patients, was high consumption of refined/highly processed foods, which included potatoes, pizza, white bread, and pasta. These patients had the highest intake of calories, fat, and carbohydrates, and were more likely to be overweight or obese, and have more digestive issues. They were the least likely to have a dietary consultation.
The vegetarian/health-conscious diet, another pattern found among 120 participants, mainly included beans, pulses, meat substitutes, and plant-based milks. These patients had the highest intake of fiber, potassium, iron, magnesium, thiamine, folic acid, and vitamin C. They were the most likely to take oral nutritional supplements (68%).
Finally, the low-residue dietary pattern in 35 patients was associated with a high consumption of puddings, savory biscuits and cakes, and sauces and condiments. Patients following this diet were the least likely to meet the recommended carbohydrate intake and were also less likely to report food-related digestive symptoms.
“This is the first study to robustly measure nutrition intake, adequacy and dietary patterns in hEDS/HSD,” the scientists concluded. “Intake of several important nutrients are impaired in hEDS, namely fibre and carbohydrates.”
