EDS and Gut Issues

EDS and Gut Issues: Understanding the Hidden Connection

If you have Ehlers-Danlos Syndrome (EDS), particularly the hypermobile type (hEDS), you may have noticed that your digestive system doesn’t always cooperate. You’re not alone—gastrointestinal symptoms affect the vast majority of people with EDS, yet they remain one of the most misunderstood and under diagnosed aspects of the condition.

The Surprising Prevalence of Gut Problems in EDS

Recent research reveals striking statistics: up to 98% of people with hEDS fulfil the diagnostic criteria for a functional gastrointestinal disorder. In one large survey, 71% reported nausea, 69% experienced reflux, and 67% dealt with postprandial fullness (feeling overly full after meals). Among children and young adults with hEDS, studies found that 61% had constipation, 32% experienced dysphagia (difficulty swallowing), and 25% suffered from dyspepsia or gastroparesis.

What’s particularly concerning is that gastrointestinal symptoms aren’t currently included in the diagnostic criteria for hEDS. This gap contributes to delayed diagnosis and fragmented care, leaving many patients struggling to find answers.

The Wide Range of Digestive Symptoms

EDS can affect the entire digestive tract, from mouth to anus. The most commonly reported symptoms include:

Upper Digestive Tract:

• Gastroesophageal reflux disease (GERD)
• Chronic heartburn and indigestion
• Difficulty swallowing (dysphagia)
• Early fullness after meals
• Nausea and vomiting
• Hiatal hernias

Lower Digestive Tract:

• Chronic constipation (affecting up to 73% of patients)
• Abdominal pain and bloating
• Diarrhoea (present in 47% of patients)
• Irritable bowel syndrome (IBS)-like symptoms
• Rectal prolapse
• Pelvic floor dysfunction

Many people experience symptoms from both the upper and lower digestive tract simultaneously, creating a complex and challenging clinical picture.

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Why Does EDS Affect the Gut?

Understanding why EDS causes gut problems requires looking at several interconnected mechanisms:

1. Structural Issues from Collagen Defects

Collagen is the primary structural protein in connective tissue, and it’s found throughout the digestive tract—in the gut wall, peritoneal ligaments, and blood vessels. In EDS, defective collagen can lead to:

• Increased tissue laxity: The gut wall and supporting structures may be more stretchy than normal, affecting how food moves through the digestive system
• Hernias: Weakened connective tissue makes abdominal and hiatal hernias more common
• Visceroptosis: Downward displacement of abdominal organs due to lax ligaments
• Altered mechanosensation: Changes in how the gut senses stretch and pressure, potentially leading to visceral hypersensitivity

Research suggests that tenascin X, an extracellular protein sometimes deficient in EDS, plays a role in the development of the enteric nervous system and may contribute to slow transit constipation.

2. Autonomic Dysfunction and Dysautonomia

One of the most important pieces of the puzzle is autonomic dysfunction—problems with the nervous system that controls automatic body functions. Up to 40% of people with EDS have some form of orthostatic intolerance, such as Postural Orthostatic Tachycardia Syndrome (POTS).

The autonomic nervous system regulates gut motility, secretion, and blood flow. When it malfunctions:

• Gut motility slows down: Food moves more slowly through the digestive tract, causing constipation, bloating, and delayed gastric emptying
• Splanchnic blood flow changes: The blood vessels in the abdomen may not constrict properly, leading to blood pooling and worsening of symptoms after meals
• Gastric electrical abnormalities: Studies show that people with POTS have irregular gastric electrical activity, especially when standing, which can cause nausea and vomiting

Interestingly, gastrointestinal symptoms often worsen after eating or when standing—both situations that challenge the autonomic nervous system.

3. The POTS Connection

The overlap between EDS and POTS is substantial, with approximately 25-73% of POTS patients also having EDS or joint hypermobility. When both conditions are present, GI symptoms tend to be more severe and affect more regions of the digestive tract.

POTS can cause:

• Worsening nausea and abdominal pain when standing.
• Post-prandial symptoms (symptoms that worsen after eating).
• Small bowel dysmotility (abnormal movement of the small intestine).
• Delayed or rapid gastric emptying.

4. Mast Cell Activation

Some people with EDS also have Mast Cell Activation Syndrome (MCAS), estimated to occur in up to 9% of POTS patients. When activated, mast cells release histamine and other inflammatory mediators that can cause:

• Diarrhoea and cramping.
• Increased intestinal permeability (“leaky gut”).
• Food intolerances.
• Bloating and reflux.
• Abdominal pain.

The relationship between EDS, POTS, and MCAS has been called a “new disease cluster,” with each condition potentially amplifying the others.

5. Visceral Hypersensitivity

People with EDS may have heightened sensitivity to mechanical stimuli throughout their body, including the gut. Animal studies of EDS have shown hypersensitisation of nerve fibers and activation of pain-processing areas in the spinal cord. In the digestive tract, this could mean:

• Lower pain thresholds in response to normal gut distension.
• Exaggerated responses to gas, bloating, or normal digestive processes.
• Overlap with disorders of gut-brain interaction (formerly called functional GI disorders).

Gastroparesis: A Common but Under-diagnosed Problem

Gastroparesis—delayed emptying of the stomach—deserves special attention because it may be more common in EDS than previously recognised. Studies show that when gastric emptying tests are performed on people with EDS, 12-50% have delayed gastric emptying.

Symptoms of gastroparesis include:

• Severe nausea and vomiting.
• Early satiety (feeling full after just a few bites).
• Bloating and abdominal distension.
• GERD symptoms.
• Poor nutritional status and weight loss in severe cases.

The challenge is that gastroparesis can be difficult to diagnose. Gastric emptying studies aren’t always reliable, and the symptoms overlap significantly with functional dyspepsia. Many people with EDS may have gastroparesis that goes unrecognised.

The Diagnostic Challenge

One of the frustrating aspects of gut problems in EDS is that standard testing often comes back normal. You might undergo endoscopy, colonoscopy, imaging studies, and blood work—only to be told everything looks fine. This doesn’t mean your symptoms aren’t real; it means that:

1. Current diagnostic tests may not capture the subtle dysmotility and hypersensitivity present in EDS.
2. The problems are often functional rather than structural.
3. Healthcare providers may not be familiar with the GI manifestations of EDS.

If you have EDS and significant GI symptoms, consider asking for:

• Gastric emptying scintigraphy (if gastroparesis is suspected).
• Anorectal manometry (for constipation and pelvic floor dysfunction).
• pH-impedance testing (for reflux).
• Upper endoscopy (to rule out eosinophilic oesophagitis, which is more common in EDS).
• Evaluation for POTS and autonomic dysfunction.
• Assessment for MCAS if symptoms are severe or fluctuating.

Management Strategies

While there’s no cure for the GI manifestations of EDS, several strategies can help manage symptoms:

Dietary Modifications

• Eat smaller, more frequent meals to reduce the burden on the stomach.
• Reduce fat and fiber, which slow gastric emptying.
• Stay well-hydrated (especially important if you also have POTS).
• Consider a low-FODMAP diet if you have IBS-like symptoms. But please note this is not a long term strategy and working with a nutritional therapist, or a similar health profession, is crucial here.
• Keep a food diary to identify personal triggers.
• For severe cases, liquid nutrition supplements may be necessary.

Supplements For EDS

A paper was published in 2005 discussing how emerging research suggests that many EDS symptoms mirror nutritional deficiencies. This has led to investigation of targeted nutritional supplementation—including vitamin C, magnesium, calcium, coenzyme Q10, glucosamine, and others—as a potential approach to managing symptoms. The theory is that synergistic combinations of these supplements may help support normal tissue function and alleviate some of the challenges associated with EDS.

The researchers hypothesised that the symptoms associated with Ehlers-Danlos syndrome may be successfully alleviated using a specific (and potentially synergistic) combination of nutritional supplements comprising the below, at dosages which have previously been demonstrated to be effective against the above symptoms in other disorders:

• Calcium.
• Carnitine.
• Coenzyme Q(10).
• Glucosamine &  Methyl sulphonyl methane.
• Magnesium.
• Pycnogenol.
• Silica.
• Vitamin C.
• Vitamin K.

Medication Options

• Prokinetics (like metoclopramide) can help speed up gut motility
• Antiemetics for nausea and vomiting
• Acid-suppressing medications for GERD
• Low-dose tricyclic antidepressants may help with pain and nausea
• Mast cell stabilisers if MCAS is present
• Avoid opioid pain medications, which slow the gut further

Lifestyle Strategies

• Physical therapy for pelvic floor dysfunction.
• Elevate the head of your bed for reflux.
• Optimise glycemic control if you have diabetes.
• Treat underlying POTS (increased salt and fluid intake, compression garments, medications).

Advanced Interventions

For severe, refractory cases:

• Feeding tubes (nasojejunal, gastrojejunal, or jejunostomy tubes).
• Gastric electrical stimulation.
• Botulinum toxin injection into the pylorus (though evidence is mixed).
• In very rare cases, gastrectomy (surgical removal of part of the stomach).

Important note: People with EDS may have higher complication rates with surgery, including poor wound healing and hernias. Surgical interventions should be considered carefully.

The Importance of Multidisciplinary Care

Managing GI symptoms in EDS requires a team approach:

• Gastroenterologist familiar with EDS.
• Geneticist or EDS specialist.
• Cardiologist or autonomic specialist (for POTS).
• Allergist/immunologist (if MCAS is suspected).
• Dietitian experienced with motility disorders.
• Physical therapist (especially for pelvic floor dysfunction).
• Mental health support (anxiety and depression are common and can worsen GI symptoms).

The Overlap with Other Conditions

The picture becomes even more complex when you consider that people with EDS have higher rates of:

• Eosinophilic oesophagitis (21% in some studies).
• Celiac disease (2-4 times higher than the general population).
• Small intestinal bacterial overgrowth (SIBO). You can complete our at home test for SIBO here.
• Inflammatory bowel disease.

These conditions should be ruled out when symptoms are severe or don’t respond to typical management.

Looking Forward: What Research Tells Us

While our understanding of EDS and gut problems has grown significantly, many questions remain:

• Why do some people with EDS develop severe GI symptoms while others don’t?
• What is the exact mechanism linking collagen defects to gut dysfunction?
• How do we better diagnose and measure gut dysmotility in EDS?
• What treatments are most effective for this specific population?
• Is there a genetic marker that could predict who will develop GI problems?

Research is ongoing, and awareness is increasing. The more we understand about the connection between EDS and gut issues, the better we can help patients find relief.

The Bottom Line

If you have EDS and struggle with digestive problems, know that you’re not imagining it—there’s a real, biological basis for your symptoms. The connection between EDS and gut issues involves collagen defects, autonomic dysfunction, altered gut motility, and visceral hypersensitivity. While management can be challenging, a combination of dietary modifications, medications, and lifestyle strategies can help improve quality of life.

Most importantly, advocate for yourself. If your healthcare provider isn’t familiar with the GI manifestations of EDS, consider seeking out specialists who are. Your symptoms are valid, and with the right support and management, improvement is possible.

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This blog post is for educational purposes only and should not replace medical advice from your healthcare provider. If you’re experiencing severe GI symptoms, please consult with a medical professional.

References

1. Wu W, Ho V. An overview of Ehlers Danlos syndrome and the link between postural orthostatic tachycardia syndrome and gastrointestinal symptoms with a focus on gastroparesis. Front Neurol. 2024;15:1379646. (click here)
2. Quigley EMM, Noble O, Ansari U. The Suggested Relationships Between Common GI Symptoms and Joint Hypermobility, POTS, and MCAS. Gastroenterol Hepatol. 2024;20(8):479-489. (click here)
3. Thwaites PA, Gibson PR, Burgell RE. Hypermobile Ehlers-Danlos syndrome and disorders of the gastrointestinal tract: what the gastroenterologist needs to know. J Gastroenterol Hepatol. 2022;37(9):1693-1709. (click here)
4. Lam CY, et al. Rome IV functional gastrointestinal disorders and health impairment in subjects with hypermobility spectrum disorders or hypermobile Ehlers-Danlos syndrome. Clin Gastroenterol Hepatol. 2021;19(2):277-287. (click here)
5. Nelson AD, et al. Ehlers Danlos syndrome and gastrointestinal manifestations: a 20-year experience at Mayo Clinic. Neurogastroenterol Motil. 2015;27(11):1657-1666. (click here)
6. A novel therapeutic strategy for Ehlers-Danlos syndrome based on nutritional supplements (2005) Med Hypotheses ;64(2):279-83 (click here)