Ehlers-Danlos Syndrome and GI Symtoms
Have you been diagnosed with Ehlers-Danlos Syndrome (EDS) and Irritable Bowel Syndrome (IBS)?
You’re not alone!
Research shows that anywhere between 30-96% of people with hypermobility disorders (like Ehlers-Danlos Syndrome) struggle with at least one GI symptom.
Many people with EDS and hypermobility experience GI symptoms like constipation and gas, and may also have food intolerances. Many of my patients have been diagnosed with IBS by their doctors because they experience frequent GI symptoms that don’t seem to have a clear cause.
Let’s dive into how Ehlers-Danlos Syndrome and GI issues may be related.
The Link Between Ehlers-Danlos Syndrome and IBS
What’s the link between a collagen disorder like EDS and a bowel disorder like IBS?
Research suggests that both patients with EDS and IBS may have gut-brain axis dysfunction. The gut-brain axis is the way our guts and brains talk to each other through the neuronal networks in the gut and in the central nervous system. When issues in the gut-brain axis arise, a variety of GI symptoms like constipation, diarrhea, bloating, gas, and nausea, can occur.
Gut-Brain Axis Dysfunction Signs and Symptoms
- Abdominal pain and discomfort
- Bloating and distension
- Constipation, diarrhea, or alternating bowel habits
- Food intolerances and sensitivities
- Nausea and vomiting
Scientists do not have a clear understanding yet of why people with EDS and IBS experience gut-brain axis dysfunction, and it is an emerging area of research. A main takeaway here though is that it may be a common factor between the GI symptoms people with EDS and IBS experience.
Let’s take a closer look now at why people with EDS may experience chronic constipation.
Constipation and Ehlers-Danlos Syndrome
The majority of my patients with EDS say they experience chronic constipation. They may have been told by their doctors that they have IBS-C (IBS with chronic constipation).
Constipation can be caused by a variety of things like low fiber consumption, dehydration, and being sedentary. But gut-brain axis dysfunction can be a factor, too.
Dysfunction in the nerve signals that tell muscles in the GI tract to contract and relax may contribute to constipation. If muscle contraction and relaxation patterns are altered or if muscle contractions are slower and weaker, food may move more slowly through the GI tract, leading to constipation.
Constipation can cause uncomfortable symptoms like lower GI pain and straining to go to the bathroom. Constipation can also be related to experiencing gas pains.
Gas and Ehlers-Danlos Syndrome
People with EDS and IBS may experience gas that can lead to bloating, uncomfortable lower GI pain, and excess flatulence.
Gut microbes create gas when they “digest” some of the food we eat, so having some gas is normal. However, experiencing extreme discomfort because of gas is not normal.
Interestingly, gut-brain axis dysfunction may lead to something called intestinal hypersensitivity. Intestinal hypersensitivity is a term used to describe an increased sensitivity of the digestive system to certain stimuli, like gas pushing on the walls of the intestines.
Intestinal hypersensitivity is a term used to describe an increased sensitivity or heightened awareness of the digestive system to certain stimuli, such as food or stress. It’s thought that intestinal hypersensitivity may occur in both patients with irritable bowel syndrome (IBS) and Ehlers-Danlos Syndrome (EDS) and can contribute to symptoms such as constipation, gas, and bloating as well as the perception that these mild symptoms are actually quite painful.
Both people with EDS and IBS may experience intestinal hypersensitivity, which can make a normal amount of intestinal gas feel quite uncomfortable and problematic.
Food Intolerances and Ehlers-Danlos Syndrome
Ehlers-Danlos Syndrome patients seem to report having food intolerances more frequently than people without EDS.
While it’s possible that scientists will learn more about how EDS itself can potentially lead to some food intolerances, the more likely explanation is that EDS patients experience more GI symptoms with certain foods because of intestinal hypersensitivity.
For example, someone with EDS may have uncomfortable GI symptoms when they eat wheat. They might assume that they cannot tolerate gluten, a protein found in wheat.
However, it’s possible that it’s not a problem with gluten at all. Wheat contains fructans, a type of carbohydrate that is considered a FODMAP. FODMAPS are short-chain carbohydrates that are poorly absorbed in the small intestine so bacteria have the opportunity to “digest” them. This leads to the production of gas which can cause bloating and GI discomfort, especially for someone with intestinal hypersensitivity.
Some people with IBS have more GI symptoms when they eat foods that have a high FODMAP content. So, it’s possible that someone with EDS and IBS thinks they have a food intolerance to gluten because they often have uncomfortable GI symptoms after eating things like bread and pasta. But it’s possible that large amounts of fructans are the problem, not gluten.
There are other reasons for food intolerance, like lacking enough of an enzyme to digest something properly. For example, lactose intolerance happens when someone does not produce enough of the enzyme called lactase. Because the gut cannot absorb lactose without being acted on by lactase, people with lactose intolerance experience diarrhea, intestinal cramping, and gassiness.
Symptom Management Options
The good news is that there are a variety of medications, supplements, foods, and lifestyle changes that can help manage IBS symptoms like constipation and gas for people with EDS.
People with constipation may benefit from daily physical activity, supplements like psyllium husk and magnesium, or the occasional use of over-the-counter stool softeners. For people with IBS who may have issues with gut-brain axis dysfunction, meditation may actually be helpful.
People with gas may benefit from daily physical activity, supplements like peppermint oil capsules, and over-the-counter medications like Gas-x. Mindfulness-based therapies like meditation may also be helpful for people with intestinal hypersensitivity that contributes to the GI discomfort that occurs with gas.
Additionally, a dietitian can help an EDS patient determine if they have food intolerances. Dietitians can help patients minimize GI symptoms in ways that enable them to enjoy as many foods as possible. For example, if fructans in wheat were causing GI symptoms and not gluten, a dietitian would encourage the patient to still enjoy foods that contain wheat, but have lower fructan content foods, like sourdough instead of whole wheat sandwich bread.
Interested in learning more about managing GI symptoms with EDS? My course Oh My GI! walks through the most common GI symptoms people with Ehlers-Danlos Syndrome and joint hypermobility experience.
Conclusion: Ehlers-Danlos Syndrome and IBS
Ehlers-Danlos Syndrome (EDS) and Irritable Bowel Syndrome (IBS) are often linked, with gut-brain axis dysfunction as a common factor. People with EDS and IBS may experience chronic constipation, gas, and food intolerances due to intestinal hypersensitivity. Symptom management options include supplements, medications, lifestyle changes, and working with a dietitian to minimize GI symptoms.
As a dietitian and an EDS patient, I know how challenging living with GI symptoms can be, but there is hope! With the right healthcare team and trustworthy recommendations, you can get symptom relief. Click here to see if working together is the next best step for you.