Ehlers-Danlos Syndrome (EDS) is a group of genetic disorders affecting the body's connective tissues, which provide support and structure to various organs and systems, including the skin, joints, and blood vessels. These tissues are critical to the movements needed for digestion, and weakened connective tissues in individuals with EDS can affect the structure and function of the gastrointestinal tract. While exact numbers are tricky to pin down, it’s estimated that Hypermobility Ehlers-Danlos Syndrome (hEDS) affects about 1 in 3,100 to 5,000 people worldwide. hEDS is part of a broader spectrum of hypermobility disorders. Think of it as a family of conditions where your joints are more flexible than average.
For individuals with EDS, weight management can be a complex and frustrating issue. The typical "eat less, move more" guideline often doesn't apply, as EDS can affect metabolism, digestion, and muscle tone. This article explores the various factors that contribute to weight changes in EDS, providing insights and strategies for managing weight and improving overall well-being.
Understanding the Connection Between EDS and Weight Changes
Many individuals with EDS deal with chronic fatigue, dysautonomia, and thyroid issues, all of which can slow down metabolism. When your body is constantly battling pain and instability, it struggles to burn calories effectively. Conversely, some people with EDS find it hard to maintain their weight because of gastrointestinal issues like gastroparesis (delayed stomach emptying), IBS, or food sensitivities. EDS impacts collagen, which is essential for muscle strength and tone. Some individuals may find it challenging to build or keep muscle mass, which is important for metabolism.
The Role of Gastrointestinal Dysfunction
Digestive issues are incredibly common, particularly in those with hypermobile EDS (hEDS), with most research showing that up to a staggering 86% of people with hEDS experience some form of GI dysfunction. EDS can negatively affect the gastrointestinal system, leading to issues such as malabsorption or difficulty eating, which can lead to excessive weight loss among individuals with EDS. A thorough evaluation can help determine the underlying cause of the weight loss and guide appropriate treatment.
The digestive tract comprises connective tissues that are critical to the movements needed for digestion. Weakened connective tissues in individuals with EDS can affect the structure and function of the gastrointestinal tract, leading to various symptoms and complications like gastroesophageal reflux disease (GERD). The weakened connective tissues can also affect the lower esophageal sphincter, which prevents stomach acid from flowing back into the esophagus. There is also a risk that EDS can increase the risk of developing gastrointestinal (GI) complications such as hernias, diverticulosis, and intestinal perforation. The weakened connective tissues can make the walls of the digestive organs more susceptible to damage and structural abnormalities. These complications can cause additional symptoms and require medical intervention.
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Functional GI disorders, like irritable bowel syndrome (IBS), affect 37% of people with hEDS. Meanwhile, gastroparesis, where the stomach takes its sweet time emptying food, is common enough that it’s become a hallmark issue in many EDS patients. Dysmotility (abnormal movement) has been found in 76.2% of EDS patients, affecting the entire GI tract from the oesophagus to the colon. That means food isn’t moving through as it should: leading to sluggish digestion, constipation, reflux, and bloating.
Malabsorption, Altered Hunger Signals, and Gut Microbiome Imbalances
The gut isn’t just a food processor, it’s the control centre for nutrient absorption, metabolism, and even hunger regulation. When digestion slows down or becomes erratic (as it does with dysmotility and gastroparesis), it disrupts the body’s ability to absorb nutrients properly. This leads to two major problems:
- Malabsorption: Essential nutrients don’t get absorbed properly, leading to deficiencies and unpredictable energy levels.
- Gut Microbiome Imbalances: Research shows that imbalanced gut bacteria can influence both weight gain and weight loss by altering how the body processes and stores calories.
On top of that, delayed gastric emptying confuses hunger signals. When food sits in the stomach for too long, you might feel full too quickly and struggle to eat enough, leading to unintentional weight loss. But at other times, you might experience sudden hunger spikes when digestion finally catches up, which can trigger cravings for quick, high-calorie foods.
Gastroparesis and dysmotility often cause extreme bloating, nausea, and pain, making it hard to eat, hard to digest, and hard to predict how your body will react to food. For many people with EDS, this leads to dietary restriction, not by choice, but by necessity. You might find yourself avoiding fibber, skipping meals, or relying on “safe” foods that don’t upset your stomach (which, unfortunately, are often nutrient-poor but calorie-dense). Over time, this can cause:
- Nutritional deficiencies (which slow down metabolism and contribute to fatigue).
- Weight loss due to inadequate intake.
- Weight gain from reliance on high-calorie, low-nutrient foods that are easier to digest.
Mast Cell Activation Syndrome (MCAS) and Weight Changes
For many people with EDS, food isn’t just fuel, it’s a huge daily trigger. One day, a meal sits fine, and the next, well it leads to bloating, cramping, or nausea, for no real clear reason. This unpredictability often traces back to Mast Cell Activation Syndrome (MCAS), a condition where mast cells (immune cells abundant in the gut) release excessive histamine and inflammatory chemicals, triggering gut hypersensitivity, food reactions, and metabolic chaos.
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When mast cells misfire in the digestive system, they disrupt motility, gut barrier function, and nutrient absorption. This can lead to diarrhoea, constipation, and even “leaky gut,” where unwanted particles enter the bloodstream, worsening inflammation. Over time, chronic gut inflammation can slow the metabolism, increases insulin resistance, and alters fat storage: explaining why some people with MCAS struggle with weight gain while others lose weight due to malabsorption and food avoidance.
Histamine Intolerance and Food Restrictions
MCAS often presents as histamine intolerance, where high-histamine foods like aged cheeses, alcohol, and fermented products trigger digestive distress. Since histamine affects gut motility and smooth muscle contraction, many people experience pain, bloating, or reflux after eating even small amounts.
To manage symptoms, many resort to restrictive diets, eliminating entire food groups. While this can bring relief, it also leads to nutritional deficiencies, unstable energy levels, and metabolic disruptions, further complicating weight regulation. Some people find themselves losing weight unintentionally, while others gain due to relying on calorie-dense, low-nutrient foods that feel “safe.”
MCAS, Inflammation, and Metabolism
Beyond digestion, MCAS-induced inflammation disrupts metabolism at a deeper level. Chronic mast cell activation has been linked to insulin resistance, increased cortisol, and disrupted appetite regulation, making it harder for the body to burn fat efficiently or maintain stable blood sugar. This explains why many people with MCAS experience unexplained weight gain or fluctuating energy levels, despite eating carefully. MCAS doesn’t just make eating difficult, it fundamentally alters how the body processes nutrients, burns energy, and regulates weight. Managing it isn’t just about cutting out histamine, it’s about reducing inflammation, stabilizing gut function, and ensuring proper nutrient absorption.
Deconditioning and Reduced Mobility
For most people, exercise is simple: move more, burn more, lose weight. But when you have Ehlers-Danlos Syndrome (EDS), movement isn’t just tiring, it can also be dangerous. When your joints can sublux from walking, your muscles can fatigue after five minutes, and your heart rate can skyrocket just from standing up, how exactly are you supposed to “just move more”? One study actually found that 50% of people with EDS avoid exercise due to fear of injury, and a massive 87% experience pain during physical activity. That’s not just about being “out of shape” it’s about survival. Because if every time you try to move, your body punishes you for it, why wouldn’t your activity levels dip.
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The Deconditioning Cycle
When a joint subluxes or dislocates, the body’s nociceptive system, its built-in alarm system fires up, sending urgent messages to the brain about potential danger/damage. This makes perfect sense in the short term; the body is trying to protect itself from actual or potential damage. On the surface, this might seem helpful, as if a movement causes injury, surely avoiding that movement is the safest option.
But here’s the problem: avoiding movement means that it’s not just the muscles surrounding the joint weaken over time, but the actual motor system. Weaker muscles mean less support for the joint, less support makes another subluxation more likely, which then triggers another pain response and more guarding from the nervous system. The next time the person moves, the joint is even more unstable, making subluxation or dislocation even more likely. Over time, the brain starts to perceive movement itself as a threat, and the cycle repeats.
Each subluxation, each injury, and each moment of guarding sends more blurry, nociceptive-driven information to the brain, making it harder for the brain to accurately process where the joint is in space. As a result, the body’s ability to stabilize itself gets worse, not better. At this point, movement feels impossible, and the person withdraws even further from physical activity. Weight gain follows, not because of poor lifestyle choices, but because the body is trapped in a pattern of instability, fear, and avoidance.
Hypermobile Exercise and Cortical Maps
Most people assume that stabilizing hypermobile joints is all about building muscle. But hypermobility isn’t just a structural problem: it’s a neurological one. In a healthy body, the brain has a detailed map of the body stored in the somatosensory cortex. This map helps track where each joint is in space, allowing for smooth, controlled movement. But in hypermobility, this map often becomes distorted or blurry from repeated subluxations/dislocations, and injuries. Every time a joint subluxes, dislocates, or sends prolonged danger signals, the brain’s ability to accurately map that joint deteriorates. If the brain doesn’t know where a joint is, it can’t stabilize it properly. This is why movement in hypermobility often feels uncoordinated, unpredictable, or even unsafe.
This is why the standard “just build muscle” approach often fails people with hypermobility. If the brain’s map of the body is inaccurate, then it doesn’t matter how strong the muscles are, the nervous system won’t use them effectively.
Many people with EDS fall into a boom-and-bust cycle with exercise. They push through discomfort, feel like they’re making progress, and then suddenly experience a EDS flare-up or injury. Instead of throwing more strength at the problem, we teach the nervous system how to interpret sensory information correctly.
We start with sensory input training, helping the brain rebuild an accurate picture of where the joints are in space. Once this is done, we work on motor control and progressive load, but only when the body is ready for it. This ensures that when strength training is introduced, the muscles can actually do their job effectively.
Strategies for Managing Weight with EDS
Given the complexities of weight management with EDS, a personalized and holistic approach is essential. Here are some strategies to consider:
- Consult with Healthcare Professionals: Work with a team of healthcare providers, including a physician, registered dietitian, physical therapist, and possibly an osteopath, to develop a comprehensive plan tailored to your specific needs.
- Personalized Nutrition and Dietary Modifications: This may involve eliminating foods that exacerbate gastrointestinal symptoms and incorporating nutrient-rich options supporting gut health. However, though you may be tempted to try a new diet, supplement, or popular complementary therapy, it is essential to only do so with advice from your physician.
- Gentle Exercise and Movement: Surprisingly, gentle strength training can be more beneficial than stretching. Focus on exercises that improve joint stability and proprioception (awareness of your body in space).
- Address Gut Health: Work with a healthcare provider to identify and address any underlying gastrointestinal issues, such as IBS, gastroparesis, or MCAS. This may involve dietary changes, medication, or other therapies.
- Manage Pain and Fatigue: Chronic pain and fatigue can significantly impact your ability to exercise and maintain a healthy lifestyle. Work with your healthcare team to develop strategies for managing these symptoms.
- Consider Osteopathic Treatment: As an osteopath, gentle manual techniques can improve joint stability and reduce pain.
- Seek Support: Living with hEDS can sometimes feel isolating, but you’re not alone. These groups can be a source of both practical advice and emotional support.
The Importance of Personalized Nutrition
The links between nutrition and Ehlers-Danlos Syndrome (EDS) are undeniable. So many complications and symptoms of EDS are gastrointestinal and food-reactive in nature that one would expect there to be a best diet for the condition. Avoid sugary drinks and check nutrition labels for Added Sugar.
Kathy Garvey is a Registered Dietitian who believes that realistic goals, moderation, and support are the keys to achieving a healthier lifestyle. Kathy earned a Masters Degree in Human Nutrition at the University of Alabama, and completed her Dietetic Internship with Sodexo. She is licensed in Louisiana, Mississippi, and Florida. Kathy has a private practice in Metairie focused on 1 on 1 nutrition counseling and serves as the Outpatient Dietitian at Tulane Living Well Clinic.
Integrative Medicine
Integrative medicine offers a holistic approach to addressing gastrointestinal symptoms in individuals with Ehlers-Danlos Syndrome (EDS). However, finding the right balance of treatments can be complex and, therefore, should only be tried with a physician’s oversight.
EDS is associated with functional GI disorders known as Disorders of Gut-Brain Interaction (DGBI), which cause dysmotility and GI symptoms. Dysmotility causes abnormal movement or function of the muscles in the digestive tract. Esophageal dysmotility affects the movement of food from the mouth to the stomach. Gastroparesis is characterized by delayed emptying of the stomach. Intestinal dysmotility causes abnormal movement of the intestines. The weakened connective tissues can affect the muscles and nerves responsible for coordinating the contractions that move food through the digestive system.
Collaboration with healthcare providers enables a measured approach to testing and treating gastrointestinal symptoms while ensuring coordinated care. An experienced physician will carefully assess medications and potential interactions with foods and dietary supplements.
Eating disorders and Ehlers-Danlos Syndrome (EDS)
Most patients with hEDS/HSD experience DGBI triggered by food, which may lead to changes in dietary behavior. A total of 62.3% of participants regularly skipped meals. “The association between altered diet and ARFID provides a compelling case for psychological support in dietary interventions; however, future studies are required to explore this hypothesis further,” study authors noted.
The present work reviews the literature linking JHS/EDS-HT and eating problems. Two illustrative case reports, in which JHS/EDS-HT manifestations contribute to developing and maintaining disturbed eating behaviors and significant weight loss, are presented.