Gastrointestinal Impacts, Symptoms, and Disorders in the Context of Hypermobility and Ehlers-Danlos Syndrome

Gastrointestinal disorders are a significant and often debilitating aspect of Ehlers-Danlos Syndrome, particularly in hypermobile forms. Much of the gastrointestinal system is comprised primarily of connective tissue and dysfunction can alter eating habits, food intolerances, motility and more.

Prevalence:

• Studies suggest that up to 50% of individuals with hEDS experience gastrointestinal symptoms, which is considerably higher than in the general population [Source: https://pubmed.ncbi.nlm.nih.gov/24134401/].
• Conditions such as Irritable Bowel Syndrome (IBS) are particularly prevalent, with some research indicating that 60-70% of hEDS patients report symptoms consistent with IBS [Source: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4641736/].

Symptoms associated with GI disorders in EDS may include:

• Irritable Bowel Syndrome (IBS): Abdominal pain, bloating, diarrhea, constipation, or a mix of both.
• Gastroesophageal Reflux Disease (GERD): Heartburn, acid reflux, chest pain, and difficulty swallowing.
• Gastroparesis: Delayed gastric emptying leading to nausea, vomiting, early satiety, and bloating.
• Dysmotility: Abnormal movement of the digestive tract, leading to constipation, diarrhea, and abdominal pain.
• Food Intolerances: Increased sensitivity to certain foods, leading to GI discomfort and systemic symptoms.

Theories on the Link Between GI Disorders and EDS

Several theories have been proposed to explain the high prevalence of gastrointestinal disorders in individuals with EDS:

1. Connective Tissue Abnormalities: EDS is characterized by defects in collagen, a key component of connective tissue that supports the structure of the GI tract. Weakness in the connective tissue can lead to abnormal motility, dysfunction of the valves in the GI tract (such as the lower esophageal sphincter), and herniation, which can cause symptoms like GERD and IBS.
2. Autonomic Nervous System Dysfunction: Many individuals with EDS also have dysautonomia, a disorder of the autonomic nervous system. Dysautonomia can affect the nerves that control the muscles of the digestive tract, leading to conditions like gastroparesis and other motility disorders.
3. Mast Cell Activation Syndrome (MCAS): MCAS, which is common in EDS patients, can cause or exacerbate GI symptoms due to the release of histamines and other inflammatory mediators. This can lead to increased permeability of the gut lining, food intolerances, and chronic GI inflammation.

Latest Medical Research

Recent research has focused on better understanding the mechanisms behind GI disorders in EDS patients and improving diagnostic and treatment approaches:

• Microbiome Research: There is increasing interest in the role of the gut microbiome in GI symptoms experienced by EDS patients. Studies are coming to explore the various imbalances in gut bacteria and if it contributes to symptoms like IBS and whether probiotics or dietary changes can improve outcomes.
• Pharmacological Treatments: Research is ongoing into the effectiveness of various medications, including prokinetics for gastroparesis, antihistamines for MCAS-related GI symptoms, and neuromodulators for IBS in EDS patients. These studies can hopefully shed light on ways to tailor treatments specifically to the unique needs of this population.
• Dietary Interventions: Dietary management strategies, including gluten-free or low-histamine diets for IBS and specialized nutrition plans for gastroparesis, are recommended to reduce GI symptoms in EDS patients. These interventions are often used alongside medical treatments to improve discomfort.

Primary Nonprofits and Advocacy Organizations

Several nonprofits and advocacy organizations are actively involved in researching and supporting individuals with EDS and related GI disorders:

1. International Foundation for Gastrointestinal Disorders (IFFGD): While not specific to EDS, IFFGD provides valuable information and support for individuals with GI disorders, including those that overlap with EDS, such as IBS and gastroparesis.
2. Mast Cell Disease Society: Given the connection between MCAS and GI issues in EDS, this organization offers resources and support for understanding and managing the GI symptoms associated with mast cell activation.
3. The Gastroparesis Patient Association for Cures and Treatments (G-PACT): Provides education, support, and advocacy for individuals with gastroparesis, which is a common GI complication in EDS patients.