Gastrointestinal (GI) Problems Seen in hEDS: What You Should Know

When most people hear Ehlers-Danlos syndrome (EDS)—especially hypermobile Ehlers-Danlos syndrome (hEDS)—they think of joint pain, flexibility, and chronic fatigue. But for many people with hEDS, one of the most disruptive and often overlooked aspects of the condition is its impact on the digestive system.

Gastrointestinal (GI) symptoms in hEDS are extremely common, yet they are frequently misunderstood, dismissed, or misdiagnosed. These issues can significantly affect quality of life—impacting eating, daily comfort, energy levels, and emotional well-being.

Why Does hEDS Affect the Digestive System?

hEDS is a connective tissue disorder, and connective tissue exists throughout the entire gastrointestinal tract. When that tissue is weak or too lax, motility (how food moves through the digestive system) and structural integrity can be compromised.

Additionally, many people with hEDS also experience comorbid conditions like dysautonomia (including postural orthostatic tachycardia syndrome/POTS) and mast cell activation syndrome (MCAS), which can further complicate digestive function.

Gastrointestinal Problems in hEDS

Here are some of the most frequently reported GI issues in people with hEDS:

• Abdominal Pain or Discomfort

  Often unexplained or labeled as functional, this may result from motility issues, gas retention, or inflammation.

• Early Satiety (Feeling Full Quickly)

  Even small meals can feel overwhelming, often due to delayed gastric emptying, reflux, or stomach motility problems.

• Bloating & Constipation

  Abnormal motility and weakened connective tissue can lead to sluggish digestion and gas buildup. Constipation is especially common and may alternate with diarrhea or looser stools.

• Reflux Esophagitis or Heartburn

  Acid may flow backward into the esophagus, resulting in chronic reflux or burning sensations.

• Irritable Bowel Syndrome (IBS)

  Many with hEDS meet the diagnostic criteria for IBS, experiencing alternating diarrhea and constipation, bloating, and unpredictable symptoms. This may overlook the underlying connective tissue and autonomic issues contributing to those symptoms.

• Fecal Incontinence

  Incontinence means having trouble controlling when you go, so it might leak out by accident. It can happen because of weak muscles or nerve problems.

• Nausea or Vomiting

  These can occur due to gastroparesis (slow stomach emptying), autonomic dysregulation, or food intolerances.

• Inflammation of the Stomach Lining

  Chronic gastritis may develop due to frequent reflux, food sensitivities, or MCAS-related inflammation.

• Difficulty Swallowing or Esophageal Dysmotility

  Weak muscles and connective tissue in the esophagus can lead to food sticking, choking, or pain with swallowing.

• Sensitivity to Dairy or Gluten

  While not always true allergies, many with hEDS report non-IgE-mediated food intolerances, which may be related to MCAS, GI inflammation, or dysbiosis.

• Delayed or Accelerated Gastric Emptying

  Some experience gastroparesis, where the stomach empties too slowly, while others may have rapid transit issues, leading to malabsorption of nutrients or frequent bowel movements.

• Pelvic Floor Dysfunction

  A major contributor to both constipation and incontinence, pelvic floor dysfunction is common due to connective tissue laxity, especially after childbirth or chronic straining.

Why These Problems Deserve Attention

GI issues in hEDS are not just “stomach problems.” They often cause:

• Reduced appetite and unintentional weight changes

• Nutritional deficiencies

• Social isolation or fear of eating in public

• Fatigue from poor absorption and chronic inflammation

• Decreased quality of life

Unfortunately, many patients are told it's “just IBS,” “just anxiety,” or that it’s unrelated to their hypermobility. But the reality is: gastrointestinal dysfunction is a very real and central part of hEDS for many people.

How to Support GI Health with hEDS

There is no one-size-fits-all plan, but these approaches may help:

• Work with a GI specialist familiar with EDS or willing to learn

• Use pacing strategies during meals, such as eating small, frequent meals

• Explore pelvic floor therapy for incontinence or constipation

• Consider identifying food triggers, especially those linked to MCAS

If you live with hEDS and experience chronic GI problems, know that you’re not alone—and it’s not all in your head. These issues are real, valid, and deserving of compassionate, evidence-informed care.

Better recognition of these GI manifestations means fewer people living in discomfort without answers—and more people getting the support they deserve.

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PMID: 26376608; PMID: 32489735; PMID: 39268060; PMID: 37597175; PMID: 30672816; PMID: 39205953; Venezia et al. (2023)

Disclaimer: This blog post is for informational purposes only and shall not be construed as behavioral health or medical advice. It is not intended or implied to supplement or replace treatment, advice, and/or diagnosis from your own qualified healthcare provider.