​Gastrointestinal Issues, Diet and Weight in hEDS

Gastrointestinal (GI) issues are among the most frequently reported complications in individuals with hypermobile Ehlers-Danlos syndrome (hEDS). Nearly all individuals with hEDS meet criteria for at least one disorder of gut–brain interaction, and many have symptoms affecting multiple regions of the digestive system. GI symptoms are often persistent, overlapping, and difficult to manage using standard treatments alone.

Emerging evidence shows that GI malabsorption of vitamins and minerals—especially in the context of comorbid postural orthostatic tachycardia syndrome (POTS, a form of autonomic dysfunction characterized by rapid heartbeat when standing) or mast cell activation syndrome (MCAS, a disorder in which mast cells release inflammatory substances inappropriately)—is a significant but underrecognized contributor to illness burden in this population.

Common GI Symptoms in hEDS

People with hEDS often experience persistent, recurring, or severe gastrointestinal symptoms, including

• Abdominal pain or cramping

• Bloating and abdominal distension

• Nausea and sometimes vomiting

• Postprandial fullness (feeling overly full after eating)

• Early satiety (feeling full quickly)

• Heartburn and acid reflux

• Regurgitation of food or acid

• Constipation, diarrhea, or alternating patterns

• Symptoms of gastroparesis, which is delayed stomach emptying that can cause nausea, vomiting, and early satiety

These symptoms commonly mimic or overlap with

• Irritable Bowel Syndrome (IBS): cramping, bloating, altered bowel habits

• Gastroesophageal Reflux Disease (GERD): chronic heartburn, regurgitation (the backward flow of stomach contents)

• Functional dyspepsia: persistent upper abdominal discomfort without clear cause

• Chronic constipation

Common Diagnoses

• IBS: up to 50% of hEDS patients

• GERD: seen in more than two-thirds of individuals with hEDS

• Functional constipation: common across all age groups

• Gastroparesis: delayed stomach emptying leading to nausea, vomiting, and early satiety

• Functional dyspepsia: ongoing upper GI discomfort without identifiable cause

Why Are GI Symptoms So Common?

Several overlapping mechanisms contribute to the high rates of GI problems in hEDS:

• Connective tissue laxity weakens the gut wall, leading to structural issues like hiatal hernias (when part of the stomach pushes into the chest through the diaphragm), rectal prolapse (part of the rectum protrudes outside the body), and abnormal motility (movement of food through the digestive tract).

• Dysautonomia, especially POTS, disrupts gastric emptying, motility, and blood flow to digestive organs.

• Gut–brain axis dysfunction and visceral hypersensitivity (over-sensitive gut nerves) cause pain even without visible structural damage.

• Pelvic floor dysfunction makes it difficult to empty the bowel completely, worsening constipation.

• Mast cell activation, especially in those with MCAS, can promote GI inflammation, food intolerance, and increased intestinal permeability.

Malabsorption of Vitamins and Minerals in hEDS

Prevalence and Risk Factors

Malabsorption is increasingly recognized in hEDS, particularly in those with

• Comorbid POTS or MCAS, which amplify severity and risk for nutrient loss

• Chronic GI dysmotility, including gastroparesis and delayed small bowel transit

• Restrictive eating behaviors, especially ARFID (Avoidant/Restrictive Food Intake Disorder)

• Fat malabsorption, inflammation, or impaired bile acid function

Most Commonly Affected Nutrients

• Iron: leads to anemia and fatigue

• Vitamin B12: deficiency can cause neurological symptoms and anemia

• Vitamin D: important for bone density and immune function

• Folate: needed for DNA synthesis and red blood cell production

• Calcium: essential for bone health and nerve function

• Less common but serious deficiencies: copper, selenium, vitamin A, vitamin K — especially in fat malabsorption

Signs and Symptoms of Malabsorption

• GI symptoms: chronic diarrhea, bloating, fatty stools, nausea, early satiety

• Systemic: fatigue, pallor, tingling or numbness, inflamed tongue, cracked corners of the mouth, muscle cramps

• Pediatric: poor weight gain, delayed growth, delayed puberty

• Older adults: osteoporosis, increased fracture risk, frailty, cognitive decline

Diagnostic Strategies

• Laboratory tests: iron/ferritin, B12, folate, vitamin D, calcium, albumin/prealbumin

• Advanced tests: wireless motility capsule, fecal fat testing, small bowel biopsy, D-xylose absorption test, fecal α1-antitrypsin (for protein loss), bone density scans

Common Pitfalls

• Symptoms often mistaken for IBS or functional dyspepsia

• SIBO (small intestinal bacterial overgrowth) frequently overdiagnosed in hEDS

• Deficiencies may be missed without regular testing

• POTS and MCAS complicate the picture

• Specialized tests (like manometry or confocal endomicroscopy) may help but are not widely available

Supplementation in hEDS: Current Knowledge

Diet, Weight, and Nutritional Risk in hEDS

Safe and Avoided Foods

Safe foods are often bland, low-fat, and low-fiber, such as rice, potatoes, broths, cooked vegetables, eggs, and lean poultry. Nutrient-rich foods are frequently avoided, including whole grains, legumes, raw vegetables, nuts, seeds, and full-fat dairy. In those with MCAS, high-histamine foods like aged cheeses, fermented foods, and certain fruits may be avoided. In children, wheat, dairy, and eggs are commonly avoided, especially with coexisting eosinophilic esophagitis or celiac disease.

Practical Dietary Strategies

• Constipation: Increase dietary fiber (20–35 grams/day) and fluids (1.5–2 liters/day) when tolerated. If gastroparesis (delayed stomach emptying) is present, a low-residue or low-fiber diet may be better tolerated.

• Gastroparesis: Small, frequent meals that are low in fat and fiber; softer or pureed textures can help when gastric emptying is very slow.

• Bloating, abdominal pain, diarrhea: A low-FODMAP diet (limits certain fermentable carbohydrates) may reduce gas and discomfort. Should be supervised to avoid over-restriction.

• Reflux/gastritis: Avoid triggers such as high-fat meals, caffeine, chocolate, and acidic foods (e.g., citrus, tomatoes).

• POTS (postural orthostatic tachycardia syndrome): Increase salt (3–5 grams/day, sometimes more in severe cases) and fluids (2–3 liters/day) to expand blood volume. Smaller, more frequent meals help prevent post-meal blood pressure drops.

• MCAS (mast cell activation syndrome): Some patients benefit from a low-histamine diet, avoiding foods like aged cheeses, fermented foods, processed meats, alcohol, and certain fruits/vegetables.

• Celiac disease or eosinophilic esophagitis (EoE): Elimination diets (e.g., removing wheat, dairy, eggs) should only be used if medically indicated. Otherwise, unnecessary restriction can increase nutritional risk.

• General principle: Aim for the least restrictive diet that controls symptoms while still supplying essential nutrients.

Nutritional Deficiencies

Avoidance patterns increase the risk of deficiencies in calcium, vitamin D, iron, and B vitamins. ARFID worsens this risk, often requiring nutritional support. Children and adolescents are especially vulnerable to poor growth.

Weight Fluctuations

Underweight status is often linked to malabsorption, ARFID, and chronic GI dysfunction. Obesity is more common in adults, often from reduced activity and reliance on energy-dense “safe” foods. Hidden hunger, meaning micronutrient deficiencies despite adequate or excess calories, is common.

Weight and Its Challenges in hEDS

• Carrying extra weight adds strain to hypermobile joints, increasing pain, instability, and mobility difficulties.

• Being underweight or malnourished weakens muscles and bones, raising the risk of fractures, fatigue, and poor healing.

• Experiencing weight changes often reflects GI symptoms: nausea, reflux, or restrictive eating can cause weight loss, while pain, fatigue, or reliance on “safe” high-calorie foods can lead to weight gain.

• Developing nutritional deficiencies is possible at any weight, including in overweight individuals (“hidden hunger”), especially when diets are restrictive or GI absorption is poor.

• Facing emotional impacts is common, as many people with hEDS experience stigma or dismissal related to weight, worsening depression, anxiety, and body image concerns.

• Managing weight safely requires a team approach, including a dietitian for balanced nutrition, physical therapy for safe strength and stability, and psychological support for eating and body image challenges.

• Focusing on health rather than a “perfect” weight supports energy, protects joints and bones, and improves overall quality of life.

Treatment Approaches by Symptom or Diagnosis

Evidence-Based Recommendations for Malnutrition

Routine malnutrition screening is important in all adults and older adults. Multidisciplinary nutrition support, including dietitians, psychologists, and caregivers, is recommended. Avoiding unnecessary dietary restrictions can help maintain adequate nutrition. Supportive mealtime environments, energy-dense meals, food fortification, snacks, and modified textures are all helpful strategies. Oral supplements should be tried first, with escalation to enteral or parenteral nutrition only when strictly necessary.

Age-Specific Considerations

• Children often have feeding difficulties such as constipation, dysphagia, gastroparesis, and eosinophilic esophagitis. ARFID and MCAS compound these challenges, increasing reliance on nutrition support. Early involvement of gastroenterology, nutrition, and psychology teams is essential.

• Adults frequently experience GI symptoms that overlap with chronic pain, fatigue, and autonomic dysfunction, reducing quality of life and employment. More than 60% alter their diets or skip meals, and many require nutrition support. Anxiety and depression worsen outcomes. Bone health is a particular concern, with lower bone density and protein intake reported in women with hEDS.

• Older adults face additional risks of polypharmacy (use of 5 or more medications), sarcopenia (age-related loss of muscle mass and strength), and osteoporosis (a condition that causes bones to thin and weaken). Medication side effects can further impair motility and absorption. Regular medication review, deprescribing when possible, and targeted supplementation are essential. Individualized nutrition counseling, supportive mealtime environments, and fortification strategies are especially valuable. Oral and enteral nutrition are preferred over parenteral whenever possible.

Summary

Gastrointestinal symptoms and malabsorption are major sources of illness in hypermobile Ehlers-Danlos syndrome. The combination of connective tissue laxity, dysautonomia, immune dysfunction, and restrictive eating behaviors contributes to widespread nutrient deficiencies and impaired digestive function. Iron, vitamin B12, vitamin D, and folate are the most commonly affected nutrients, but deficiencies in trace elements and fat-soluble vitamins can also occur in more severe cases. These problems can lead to fatigue, anemia, neurological changes, bone fragility, and growth delays in children, as well as osteoporosis and frailty in older adults.

Because symptoms are often complex and overlapping, they may be mistaken for other conditions or overlooked entirely, delaying care. Routine screening, early intervention, and coordinated multidisciplinary management are therefore essential for improving nutrition and long-term outcomes. With careful monitoring and tailored strategies, people with hEDS can reduce complications, improve energy and bone health, and achieve a better quality of life. This is particularly important for children, adults, and older adults who also live with comorbid conditions such as POTS or MCAS, since these increase the risk and severity of gastrointestinal issues.