Many people with Ehlers-Danlos syndrome (EDS) also have irritable bowel syndrome (IBS), or symptoms resembling it. Scientists are not yet sure why this happens, but it could be that EDS affects the tissue of the intestines.
Another potential explanation is changes in gut flora or nerves not working as they should to control digestion. This can be part of dysautonomia, which some people with EDS also experience.
This article explores the relationship between EDS and IBS, delving into potential connections, symptoms, and treatment options.
While IBS is not a direct symptom of EDS, evidence suggests that
EDS is a group of genetic disorders that affect the body’s connective tissues. Depending on the type of EDS, this may include skin, tendons, blood vessels, or potentially, the intestines.
EDS consists of 13 different subtypes, with hEDS being the
Scientists do not fully understand the link between EDS and IBS, but there are several theories.
Connective tissue problems
EDS can affect connective tissues throughout the body by disrupting collagen formation. Collagen is a type of protein that is present in the walls of the stomach and intestines.
Another theory is that problems with collagen may affect intestinal permeability. The intestines have tiny holes in them to allow nutrients to enter the bloodstream. When these holes become too numerous or large, the intestines may become too permeable, or “leaky.”
Dysautonomia
If a person has dysautonomia that affects the digestive system, the contractions that empty food from the stomach, move food along the intestines, or empty stool from the rectum could become disrupted.
Alterations in nerve function could also result in visceral hypersensitivity, which is when the nerves in the intestines become too sensitized, resulting in pain.
Microbiome imbalance
People with EDS may have an imbalance in the microbiome, which is the ecosystem of microorganisms that live in the gut.
For example, if a person has impaired motility, they may have a slower transit of food through the small intestine. This
- bloating
- gas
- a change in bowel movements
Mental health conditions
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IBS refers to a group of symptoms that affect digestion but without any visible damage to the intestines. The
- changes in bowel habits, such as diarrhea or constipation
- abdominal pain and cramping
- mucus in stool
- swelling or bloating of the abdomen
- a feeling that the bowels are not empty after passing stools
Symptoms can vary in severity and duration from person to person.
The term “food intolerance” encompasses a variety of negative reactions to specific foods, aside from allergic reactions. As a result, it can be difficult to determine what is IBS and what is a food intolerance, especially as some people with IBS do react to specific foods.
Some key differences between food intolerances and IBS include:
- Specific triggers: Food intolerances have specific triggers, such as lactose. IBS symptoms can also occur after eating certain foods, but other factors such as stress or hormonal fluctuations can also play a role.
- Onset of symptoms: Food intolerance symptoms typically occur within hours of consuming the trigger food. Some with IBS have quick reactions to certain foods, but for others, it can be more unpredictable.
- Diagnostic tests: Some food intolerances have specific tests that can identify them. IBS is usually a diagnosis of exclusion, meaning doctors diagnose it after ruling out other explanations.
A 2023 survey suggests that perceived food intolerances are common among those with EDS, with 19.8% of 1,193 eligible survey participants reporting they had one. However, the survey relied on self-reported symptoms.
IBS is not the only digestive condition associated with EDS. Below are some of the others that may affect people with connective tissue disorders.
Dysmotility
Dysmotility means food moves through the digestive system too slowly. According to the charity Ehlers-Danlos Support UK, some people experience this mildly, while others have a severe form known as gastroparesis.
Gastroparesis is a condition where the stomach empties more slowly, causing symptoms such as nausea, vomiting, and feeling full quickly.
Gastroesophageal reflux disease (GERD)
Gastroesophageal reflux disease (GERD) is one of the
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Anyone experiencing a persistent change in bowel habits should contact a healthcare professional, especially if the symptoms are severe, persistent, or significantly affecting their quality of life.
Until the appointment, it may help to keep a food and symptom diary. This may help with identifying patterns and providing valuable information to the doctor. A symptom diary can include details such as:
- the date or time of symptoms
- what a person ate that day
- the nature and duration of the symptoms
- if anything appears to make them worse or better
Individuals should seek immediate medical attention if they experience symptoms such as:
- sudden or severe abdominal pain
- unexplained weight loss
- persistent vomiting or constant nausea
- blood in the stool
- black or tarry stools
Diagnosing IBS in individuals with EDS involves taking a thorough medical history and performing a physical examination. Some additional tests that a doctor may perform to rule out other conditions include:
- Blood tests: These can check for anemia, which can be a sign of a bleed in the intestines. Doctors may also look for signs of infection, inflammation, celiac disease, or other conditions.
- Stool tests: Examining a stool sample can rule out infections or inflammatory bowel disease (IBD).
- Colonoscopy or endoscopy: For these tests, doctors use a very slim camera to examine the inside of the gastrointestinal tract.
- Esophageal manometry: This studies the movements and pressure of the esophagus, small bowel, or rectum.
- pH monitoring: This test can help identify acid reflux.
- Gastric emptying scan: This scan assesses for dysmotility or delayed gastric emptying. During this procedure, a person eats a substance containing radioactive material. The doctor then scans the abdomen to track how quickly it empties from the stomach.
- Breath testing: Breath testing can determine if an individual has SIBO.
- Barium swallow: This is an X-ray that uses barium contrast fluid to study the structure and function of the esophagus.
- Imaging tests: This may include an abdominal ultrasound to check for blockages in the stomach or intestines.
IBS treatment in people with EDS can vary depending on what helps each individual. A person may benefit from:
- Dietary modifications: For people with dietary triggers, trying a low FODMAP diet, adjusting fiber intake, or avoiding specific foods may reduce symptoms.
- Psychological therapies: If stress or mental health conditions worsen IBS, cognitive behavioral therapy (CBT), or other stress management techniques may help reduce symptom severity.
- Medications: Antispasmodics, laxatives, or antidiarrheal medications may help to manage symptoms.
For more information on IBS and EDS treatment, individuals can consult a doctor who may refer them to a gastroenterologist.
While IBS is not a direct symptom of EDS, the prevalence of IBS-like symptoms among EDS patients suggests a significant link. Researchers are still investigating the connection.
Keeping a detailed symptom diary may help both patients and doctors spot patterns in symptoms, which could inform their diagnosis or treatment plan. Some find that dietary changes, stress reduction, or medications help to improve quality of life.
Numerous tests are available that may also help identify the underlying cause of the symptoms or rule out more serious conditions.
If individuals are experiencing severe or persistent gastrointestinal symptoms, getting medical advice is a good next step. If the symptoms are severe, getting worse, or occurring alongside concerning changes, such as unexplained weight loss, it’s important to get immediate medical help.