When the Gut Can’t Keep Up: Gastrointestinal Dysmotility, Malnutrition, and the Case for Early Enteral Nutrition in Hypermobile Ehlers–Danlos Syndrome

Gastrointestinal symptoms in hypermobile Ehlers–Danlos syndrome (hEDS) are increasingly recognised as more than coincidental. While joint hypermobility is often the most visible feature, research now shows the gastrointestinal tract can be significantly affected, sometimes to the point where oral intake is no longer sufficient to maintain nutrition.

For some individuals, gut dysmotility leads to progressive weight loss, dehydration, and micronutrient deficiencies. Yet in hospital settings, this decline is still too often underestimated or misattributed, delaying appropriate nutritional support.

This article explores current research on gastrointestinal dysmotility in hEDS, the real risk of malnutrition, and why early enteral nutrition, including nasogastric feeding, may be medically necessary.

Gastrointestinal Involvement in hEDS Is Common and Clinically Significant

People living with hEDS frequently report symptoms such as nausea, early satiety, reflux, bloating, constipation, abdominal pain, and vomiting. These symptoms are often linked to disorders of gut–brain interaction, autonomic nervous system dysfunction, and, in some cases, measurable motility disturbances.

Guidance from the American Gastroenterological Association emphasises that persistent gastrointestinal symptoms in hEDS should not be dismissed as purely functional. Physiological evaluation may be warranted, particularly when oral intake is compromised. Abnormal gastric emptying and pelvic floor dysfunction appear more common in this population than previously recognised (Aziz et al., 2025).

Large survey data show gastrointestinal symptoms are nearly universal in individuals with hEDS/HSD, with significant impact on quality of life and healthcare utilisation (Lam et al., 2021).

Evidence of Objective Dysmotility

Although many people experience fluctuating or functional symptoms, a subset develop profound gastrointestinal dysmotility.

A recent clinical case described a patient with hEDS presenting with severe gastroparesis. Objective testing showed markedly delayed gastric emptying, abnormal small bowel coordination, and biopsy findings consistent with enteric neuropathy. Despite medication trials and gastric stimulation therapy, oral intake remained inadequate, ultimately requiring enteral feeding support (Truong & Alluri, 2025) These findings align with broader research suggesting connective tissue abnormalities and autonomic dysfunction may impair gastrointestinal motility (Castori et al., 2015; Hakim et al., 2017).

Mechanisms Behind Reduced Intake

Several physiological factors may limit oral intake in hEDS:

• Delayed gastric emptying

• Autonomic dysfunction, including POTS

• Visceral hypersensitivity

• Connective tissue laxity affecting coordination

• Pelvic floor dysfunction

• Mast cell activation contributing to symptom burden

Dietary research indicates individuals with hEDS often trial elimination diets to manage symptoms, which can unintentionally exacerbate nutritional deficiencies when not carefully supervised (Steiner, 2025).

Malnutrition Risk Is Real

Persistent nausea, vomiting, early satiety, and discomfort can lead to:

• Reduced caloric intake

• Protein insufficiency

• Micronutrient deficiencies

• Weight loss

• Fatigue and muscle loss

Quality-of-life studies consistently show gastrointestinal involvement in hEDS is associated with significant functional impairment (Inayet et al., 2018; Lam et al., 2021).

In hospital settings, prolonged oral trials without early intervention may allow preventable nutritional decline.

When Enteral Feeding Is Clinically Appropriate

Nasogastric feeding may be indicated when:

• Oral intake is insufficient

• Weight loss or malnutrition is present

• Dysmotility is documented

• Hydration or medication tolerance is compromised

Enteral nutrition supports:

• Prevention of further nutritional deterioration

• Maintenance of gut integrity

• Reduced complications compared with parenteral nutrition

• Stabilization while motility evaluation continues

Clinical guidance supports early nutritional intervention when intake is compromised (Aziz et al., 2025).

Multidisciplinary Care Is Essential

Optimal management involves collaboration between:

• Gastroenterology

• Nutrition/dietetics

• Rheumatology

• Autonomic specialists

• Pain management

• Psychological support services

Integrated care models improve outcomes and reduce unnecessary dietary restriction that may worsen malnutrition risk (Aziz et al., 2025).

A Growing Shift in Understanding

There is increasing recognition that gastrointestinal dysmotility in hEDS is not simply a matter of discomfort. For some individuals, it represents a physiological limitation affecting nutrition, daily function, and quality of life.

Recognising when oral intake is no longer sufficient is essential clinical care. Early nutritional intervention, including nasogastric feeding when indicated, protects the body while further evaluation continues.

Read more about Malnutrition

References (APA 7th)

Aziz, Q., Harris, L. A., Goodman, B. P., Simrén, M., & Shin, A. (2025). AGA clinical practice update on GI manifestations and autonomic or immune dysfunction in hypermobile Ehlers–Danlos syndrome. Clinical Gastroenterology and Hepatology, 23(8), 1291–1302.

Castori, M., et al. (2015). Gastrointestinal and nutritional issues in Ehlers–Danlos syndrome. American Journal of Medical Genetics Part C.

Hakim, A., et al. (2017). Chronic fatigue and autonomic dysfunction in EDS. American Journal of Medical Genetics Part C.

Inayet, N., et al. (2018). Quality of life in hEDS patients with gastrointestinal involvement. Neurogastroenterology & Motility.

Lam, C., et al. (2021). Gastrointestinal symptom burden in hypermobile EDS. Clinical Gastroenterology and Hepatology.

Steiner, L. A. (2025). Nutrition implications in hypermobile Ehlers–Danlos syndrome (Master’s thesis, University of North Dakota).

Truong, J. C., & Alluri, A. A. (2025). Severe gut dysmotility in hypermobile EDS. American Journal of Gastroenterology.