Digesting the Facts: Tackling Gastrointestinal Challenges in EDS

Living with Ehlers-Danlos Syndrome (EDS) often feels like piecing together a puzzle without being able to visualize the final desired image. Patients poke at fixing separate symptoms while no one is tying the whole picture together. This creates difficulties when multiple systems come together like they do in the nutrition and waste mechanisms within the human body. That means the connective tissue challenges that define EDS don’t just affect joints and skin—they can profoundly impact the gastrointestinal (GI) tract. While many people associate EDS with hypermobility, fragile skin, and frequent dislocations, its systemic nature means organs supported by connective tissue, like those in the GI tract, are also very often affected.

For patients managing EDS-related GI issues, the day-to-day can include discomfort, disrupted routines, and the challenge of finding solutions that work for basic life requirements such as eating and eliminating waste and urine. This article dips into some of the complexities of GI issues in EDS and hypermobility, providing simple insights and tips for practical diet, nutrition, and symptom management. Typical GI symptoms include constipation, diarrhea, abdominal pain, bloating, nausea, vomiting, acid reflux, difficulty swallowing, and early satiety. It is theorized that the weakened connective tissue in the digestive tract can disrupt normal muscle contractions needed for food movement, leading to irregular bowel movements and other discomfort. But much is still not known and is theory not yet proven.

Fact Not Fiction: What We Know

Data was published in October 2024 in Medicine, finding that digestive disorders were the most prevalent co-occurring diagnosis in young hypermobile EDS (hEDS) patients. They found that 54.6% of patients with hEDS and 41.6% of patients with HMS had gastronomical symptoms, compared to 28.5% of the general population. Read more on the study’s results, which leverages insights directly from health insurance company claims data. These findings underscore the significant impact of GI issues on the EDS population, highlighting the importance of comprehensive management strategies and their need to be matured. And if you are curious, the study reports cardiology issues were the #2 most common comorbidity in hEDS (need support with that? check out our Dysautonomia Patient Guide), while anxiety and neurodiversity rounded out the top four on the list of findings, in case you were wondering.

Researchers said, “While the hallmarks of hEDS and hypermobility spectrum disorders (HSD) are pain, joint instability, and injuries to soft tissues, most patients with hEDS and HSD have a myriad of manifestations within the gastrointestinal tract that affect dietary tolerance and quality of life. These include irritable bowel syndrome, functional dyspepsia, gastroparesis, constipation, and celiac disease. Other common comorbidities include postural orthostatic tachycardia syndrome and mast cell activation disorders, which may impact fluid and electrolyte balance, food intolerances, and contribute to anxiety around food.“

A 2020 Danish cohort study analyzing hospitalization records of 1,319 EDS patients identified GI functional disorders, hernias, asthma, pneumonia, and osteoporosis as the most common co-occurring conditions, according to Ehlers-Danlos News. Additionally, a study published in the Journal of Pediatric Gastroenterology and Nutrition found a higher prevalence of constipation, dysphagia, and eosinophilic esophagitis in children and young adults with hypermobile EDS and joint hypermobility syndrome (Eos Network)

Variables in Type of Connective Tissue Disorders
Research indicates that both Marfan syndrome and hypermobile Ehlers-Danlos syndrome (hEDS) are associated with GI symptoms, though the prevalence and severity differ between the two conditions. A study published in Gastroenterology Research and Practice found that functional gastrointestinal disorders (FGIDs) are reported in both Marfan syndrome and hEDS but appear to be more common and severe in hEDS. (Source).

In total, 93% of patients with EDS complained of GI symptoms and qualified for at least one gastrointestinal disorder compared with 69.8% of patients with Marfans, according to the study findings. 

The exact mechanisms underlying these GI manifestations are not yet fully understood, but as the number one common disorder hEDS patients have, more funding and research must be dedicated to discovering why. It’s hypothesized that the structural abnormalities in connective tissue characteristic of these syndromes may lead to increased tissue fragility and motility issues within the GI tract. In hEDS, for instance, the increased laxity of connective tissues could result in a higher prevalence of conditions like hiatal hernia, which in turn may cause symptoms such as acid reflux and abdominal pain. (Source).

While inflammation is a known factor in various gastrointestinal disorders, current research does not provide conclusive evidence linking inflammatory differences between Marfan syndrome and EDS to their respective GI issues. Studies are needed to explore the potential role of inflammation and other factors in the gastrointestinal manifestations of these connective tissue disorders.

Therefore, it is proven by medical research that there exists a correlation (shows a relationship) between EDS and GI dysfunction. But we wanted to know if there is causation (proof one directly affects the other)? Let’s explore the idea beyond the facts.

Types of GI Disorders – From Bloating to GERD: Understanding GI Impact on EDS Patients 

Now you know the fact that GI issues are particularly prevalent in the EDS community, with other studies estimating that up to 75% of patients report related GI symptoms (Source). These issues can manifest in various ways, from chronic bloating and abdominal pain to severe motility disorders (a digestive issue that occurs when the muscles or nerves of the GI tract don’t work properly including difficulty swallowing, constipation, diarrhea and reflux). While the exact mechanisms differ, they all stem from the fundamental tissue laxity and systemic dysfunction that characterize EDS primarily due to the weakened connective tissues affecting the digestive system’s efficiency and function; the severity and type of symptoms can vary greatly between individuals.

OVERVIEW: Types of GI Dysfunction, Disorders and Symptoms 

EDS patients may experience a mix of functional, structural, and motility-related GI problems. Here’s an outline of some of those conditions and their symptoms so you can conduct more research on your own to discuss with your healthcare team the best approach for your individualized care (see sources cited in the bibliography at the end for more information):

Functional Gastrointestinal Disorders

  • Irritable Bowel Syndrome (IBS): Common symptoms include abdominal cramping, bloating, and diarrhea or constipation.
  • Functional Dyspepsia: Typical symptoms include upper abdominal discomfort, early satiety, and nausea.

Structural Gastrointestinal Problems

  • Gastroesophageal Reflux Disease (GERD): Often linked to weakened sphincters, causing acid reflux and heartburn.
  • Hiatal Hernia: The weakened connective tissue may allow the stomach to protrude into the chest cavity, compounding GERD symptoms.

Motility Disorders

  • Gastroparesis: Delayed stomach emptying causes fullness, bloating, and nausea.
  • Intestinal Dysmotility: Slow or irregular intestinal movement can lead to chronic constipation, diarrhea, or both.

Malabsorption and Nutritional Deficiencies

  • Small Intestinal Bacterial Overgrowth (SIBO): Exacerbates bloating, pain, and nutrient absorption issues.

Mast Cell Disorder and GI Connections

Mast cells create a fundamental defensive and immuno-regulatory function, particularly at the mucosal border between the body and the environment – like the skin and the gastrointestinal system. The GI tract holds the largest population of mast cells in the body. (Source). We would be remiss without reviewing some of the connections between GI issues and mast cell activation syndrome (MCAS) or mast cell disorders as it relates to EDS – a commonly seen comorbidity. Here’s a brief review of how they interrelate.

Mast cells are immune cells that play a key role in allergic reactions and inflammation, releasing chemicals such as histamine when activated. Histamine, a primary mast cell mediator, can directly affect ‘smooth muscle’ contraction by binding to histamine receptors on the smooth muscle cells in the gut, potentially leading to altered motility. When mast cells become dysregulated, this leads to a heightened inflammatory response that can significantly affect the GI tract leading to dysfunction including:

  • Inflammation in the GI Tract: Mast cell activation can cause excessive histamine release, leading to inflammation of the GI mucosa. This can result in symptoms like abdominal pain, nausea, diarrhea, and bloating. Chronic inflammation may also contribute to conditions like IBS or functional dyspepsia.
  • Increased Permeability (Leaky Gut): Dysregulated mast cells can disrupt the integrity of the GI barrier, making the gut more permeable. This allows toxins, allergens, and bacteria to enter the bloodstream, exacerbating systemic symptoms common in EDS patients. (Source).
  • Food Sensitivities and Intolerances: Mast cell activation can trigger hypersensitivity to certain foods, especially those high in histamine or histamine-releasing properties. Foods such as aged cheeses, alcohol, fermented products, and shellfish are common triggers for GI flare-ups in EDS patients with MCAS. 
  • Delayed Gastric Emptying: MCAS may also contribute to motility issues like gastroparesis, where the stomach empties slowly. Histamine and other mast cell mediators interfere with smooth muscle function, further impairing gut motility.

Managing GI Symptoms Related to Mast Cell Disorders

  • Careful Management of Intake
    • Food sensitivity management is often the treatment option that most people find is within their control. A restrictive diet that depends on an individual’s reactive profile can also be quite challenging to manage with today’s complexities of chemical additives by artificially produced and enhanced food engineering. For many EDSers, this often requires specialty diets managed at home where ingredients are carefully monitored. Some inroads are being made slowly to help, for example, with more gluten free product availability and food dyes becoming more known in labels. 
  • Histamine-Lowering Diet
    • A low-histamine diet can help minimize symptoms. This involves avoiding trigger foods like fermented products, processed meats, and certain vegetables (e.g., tomatoes, spinach). Try searching for the specifics on what’s called the FODMAP diet to get started.
  • Pharmacological Interventions
    • Antihistamines: H1 blockers (e.g., loratadine) and H2 blockers (e.g., famotidine) are often effective in reducing GI inflammation.
    • Mast Cell Stabilizers: Medications like cromolyn sodium can help regulate mast cell activity and prevent symptom flare-ups in some people.
  • Supplements
    • Quercetin and vitamin C, natural mast cell stabilizers, may help reduce inflammation and improve GI symptoms.

Other Gastrointestinal Research Findings to Note
See the recent related research, The Suggested Relationships Between Common GI Symptoms and Joint Hypermobility, POTS, and MCAS published in Gastroenterology & Hepatology in August 2024 | Link to full text. Their research examines the relationship between common GI symptoms and three other disorders: hypermobility spectrum disorders (HSDs) or hypermobile EDS (hEDS), postural orthostatic tachycardia syndrome (POTS), and mast cell activation syndrome (MCAS). The study focuses on a group of young adult females who presented with debilitating GI symptoms like intractable nausea and vomiting, gastroesophageal reflux, and constipation, alongside a history of HSD/hEDS, POTS, and/or MCAS. The article discusses the potential mechanisms linking these systemic disorders to the observed GI symptoms, emphasizing the role of visceral hypersensitivity (increased sensitivity to pain in the internal organs), dysautonomia, and mast cell degranulation (the process during which mast cells release inflammatory substances). While the way these conditions change the body and cause disease is still under investigation, the authors suggest there is a potential “disease cluster” where these disorders frequently coexist and may even amplify the symptom severity of the others. They highlight the need for standardized diagnostic criteria and further research to better understand these conditions, particularly in the context of their shared GI symptoms.

Learn More about MCAS and EDS
For more insights on managing mast cell disorders beyond GI issues when you have EDS, see our MCAS Patient Guide or watch a few historical expert doctor webinars on our website.

Want More on GI-Related Diagnostic Tests and Treatment? Read On

If you have been diagnosed with EDS and are suffering from gastrointestinal issues, you will probably be referred for several tests to help determine the cause or location of your problems and work out a plan with your doctor on how best to treat them. Treatments available are varied and depend on the range of symptoms experienced. The aim of the treatments will be to help alleviate the symptoms rather than cure the conditions.

The tests that you may have include:

  • Gastroscopy and/ or colonoscopy – a gastroscopy includes a camera looking down the throat into the stomach, and a colonoscopy is a camera inserted into the rectum to look through the colon. Both tests are used to check for signs of any abnormalities or inflammation
  • Stomach emptying tests – to check the level of dysmotility by timing how quickly the stomach empties into the small bowel
  • Hydrogen breath test – this will test whether there are any excess bacteria in the bowel
  • Barium contrast swallow test – the dye used will highlight any structural abnormalities of the esophagus
  • Photography – x-ray images taken of the rectum or anus to check for any blockages or obstruction that could be contributing to your issues

Overall GI Management and Treatment Strategies

A combination of conservative and medicinal treatments will most likely be used to help you feel more comfortable and improve your general health. Surgical treatments will be a last resort and will have to be carefully considered, given that many people with EDS struggle to heal fully due to the delicacy of their tissues. Here’s a simplistic look at options:

  • Dietary Modifications: Food diaries, elimination diets, small meals, and anti-inflammatory foods.
  • Pharmacological Interventions: Prokinetics, proton pump inhibitors (PPIs), antihistamines, and digestive supplements.
  • Physical Therapy and Exercise: Gentle yoga, Pilates, or abdominal massage can help.
  • Stress Management: Mindfulness and therapy supporting the balance between the gut-brain connection.

Future Research and Potential Treatments 

Emerging Therapies

  • Research into the human microbiome is shedding light on its critical role in gastrointestinal health. Therapies focused on microbiome modulation, such as precision-targeted probiotics and prebiotics, are being developed to address bloating, pain, and motility disorders. These approaches aim to restore gut flora balance and improve digestion, particularly in conditions like IBS and SIBO commonly seen in EDS patients (Source).
  • Gene therapy is an emerging area of interest for addressing the root causes of some known types of genetically validated EDS, such as vascular type (Source).

Clinical Trials

  • Clinical trials are currently exploring new “motility agents” – medications specifically designed to enhance stomach emptying and intestinal movement, aiming to offer better treatment options for individuals suffering from conditions like gastroparesis (delayed stomach emptying) and intestinal dysmotility (abnormal bowel movements), by directly addressing the underlying mechanisms that disrupt normal gut motility. (Source).
  • In addition, research at the Cleveland Clinic is actively exploring the use of mast cell stabilizers as a potential treatment for MCAS as a common relative to EDS. These medications can effectively reduce inflammation and hypersensitivity symptoms, particularly those related to gastrointestinal mast cell activation in affected individuals, offering a more targeted approach to symptom management (Source). Hopefully, we will learn more soon on this approach.

Want Suggested Symptom Management Strategies? Read On

A group of EDS-expert gastroenterologists published a review in May 2024 highlighting several nutritional strategies and implications to be aware of that could reduce symptoms, outlined in their report, Nutritional Considerations for Hypermobile Ehlers-Danlos Syndrome (co-authored by Dr Dacre Knight, Cheryl Harris, Lisa Mejia, and Laurie Bilyeu) listed in the Table 1 image below, or read the full paper on Practical Gastroenterology for a wealth of recommendations including a few excerpts outlined below.

Top Tips from the Tummy Docs (TL;DR)

As available from Practical Gastroenterology, the review discusses key aspects like dietary management for individuals with hEDS, including:

  • potential benefits of small, frequent meals
  • chewing well and mindfully
  • limiting certain foods like fatty or spicy options, wheat, caffeine, and alcohol
  • highlights the potential link between a Mediterranean diet and symptom improvement due to its lower animal protein intake and higher fruit/vegetable content
  • supplementing vitamins like vitamin D, B12, and iron due to potential deficiencies associated with hEDS
  • Ensure adequate fluid intake, including consideration for additional salt if you are experiencing orthostatic hypotension (POTS).


CAUTION: Potential GI Complexities in EDS

Popular Weight Loss Drugs 

  • Currently, there is no medical research specifically addressing the use of weight loss medications, such as Ozempic (semaglutide), in individuals with hEDS. Medications like Ozempic, which are GLP-1 receptor agonists, can have GI side effects. These side effects may include nausea, vomiting, diarrhea, and constipation. Given the prevalence of GI problems in hEDS, such as dysmotility and gastroparesis, the use of these medications could potentially exacerbate existing symptoms. A recent article from the EDS Clinic highlights the potential risks of using GLP-1 receptor agonists like Ozempic and Wegovy in EDS patients, emphasizing the importance of careful consideration and consultation with healthcare providers before initiating such treatments.

Vitamin Deficiencies

  • Deficiencies in vitamins such as D and B12 and minerals like magnesium and iron are common in EDS patients, often due to malabsorption issues. Addressing these deficiencies is crucial, as they can exacerbate symptoms like fatigue, pain, and cognitive difficulties, which may indirectly affect morbidity and quality of life.

Nutritional Challenges Can Lead to the Need for Feeding Tubes

  • When the condition gets more dire, some patients experience gastrointestinal complications, such as gastroparesis, which can lead to significant nutritional challenges. In severe cases where oral (food) intake is insufficient, feeding tubes may be utilized to ensure adequate nutrition. Enteral feeding methods, including nasojejunal tubes (a method of feeding patients through a small tube that’s inserted through the nose and into the small intestine) and percutaneous endoscopic gastrostomy-jejunostomy (PEG-J) tubes (tubes which are inserted directly through the abdominal wall and into the stomach), deliver nutrients directly into the gastrointestinal tract. For patients who cannot tolerate gastric feeding due to stomach paralysis, jejunal feeding—delivering nutrients into the small intestine—is often more effective, according to the Ehlers-Danlos Association in Australia.

    It’s important to note that the use of feeding tubes in EDS patients requires careful consideration of individual medical histories and potential risks, such as intestinal perforation, which may vary depending on the specific EDS subtype. For example, while hypermobile EDS does not appear to increase the risk of intestinal perforation, vascular EDS patients may have a higher risk, a warning shared on the EDS community forum of lived experience among patients at Inspire. For more detailed information on lived experience with feeding tubes and EDS, read patient stories on the Ehlers-Danlos Association or on the Ehlers-Danlos Society websites about individuals managing these challenges. Additionally, the Oley Foundation offers comprehensive resources on tube feeding, including practical tips and support for patients and caregivers. Consulting with healthcare professionals familiar with EDS is crucial to determine each individual’s most appropriate nutritional support strategies.

Closing

Managing GI issues in EDS requires a comprehensive, holistic approach often carefully coordinated by patients themselves when providers do not communicate across specialty silos. By incorporating proper coordinated medical care, lifestyle adjustments, and emotional support, patients can build the knowledge to learn to navigate some of these GI challenges with proper support. Try not to lose hope facing a frustrating set of symptoms impacting people daily about the most basic human need for energy in food. To use a bad pun, give yourself a gut check to realign your expectations of gastrointestinal health overall and manage the best you possibly can. Get expert advice from the experts in gastroenterology. Try to gain a level of empowerment through knowledge and connection with the community as a key for developing healthy coping skills and self-compassionate understanding. In other words, learn how to follow your own gut instinct on what treatment is right for your body. 

Additional Resources on Emerging Therapies

  • American Gastroenterological Association (AGA)
    Provides insights into the latest research on motility disorders, including ongoing developments in microbiome modulation. Learn more at https://www.gastro.org
  • Rare Disease Clinical Research Network (RDCRN)
    Connects patients with studies and consortia focused on rare diseases, including EDS and associated GI issues. Learn more at https://www.rarediseasesnetwork.org
  • Mast Cell Disease Society
    Offers information on studies related to mast cell activation syndrome (MCAS) and related therapies for GI interactions. Learn more at https://tmsforacure.org

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