Ehlers Danlos Syndrome and Gastroparesis

Graphic of blog post title: Ehlers-Danlos Syndrome and Gastroparesis

Do you have Ehlers-Danlos Syndrome and worry about having gastroparesis too?

 

Maybe you heard that these conditions can be connected, and that gastroparesis seems to be more common in people with Ehlers-Danlos Syndrome.

 

This article will explain what the connection between these conditions may be, plus walk through gastroparesis management strategies.

 

Let’s dive in!

 

Ehlers-Danlos Syndrome and Gastroparesis

 

What is Ehlers-Danlos Syndrome?

Ehlers-Danlos Syndrome is considered a connective tissue disorder. Multiple connective tissue disorders can fall under the term “Ehlers-Danlos Syndrome”. The most common subtype of Ehlers-Danlos Syndrome is hypermobile Ehlers-Danlos Syndrome (hEDS). People with hEDS often have hypermobile joints, chronic pain, and a variety of symptoms that can affect multiple body systems, including the gastrointestinal tract.

 

Common Ehlers-Danlos Syndrome symptoms:

  • Joint hypermobility (fingers, knees, elbows that can go “backward”)
  • Joint pain
  • Unstable joints that “slip out” or even dislocate
  • Fragile skin and/or skin that bruises easily
  • Digestive issues like constipation, nausea, acid reflux, etc.
  • Fatigue

What is gastroparesis?

Gastroparesis is a condition where food moves too slowly from the stomach into the small intestine.

 

In the medical community, slow movement of food through the stomach is referred to as delayed gastric emptying. When gastric emptying is so slow that more than 50% of food is still in the stomach 60-90 minutes after eating, it could be considered gastroparesis.

 

Gastroparesis may be caused by issues with the nerves that control the movement of the stomach muscle. When food doesn’t move through the digestive system at the right pace, people may experience nausea, poor appetite, uncomfortable fullness, and vomiting.

 

A graphic that shows a list of common gastroparesis symptoms: nausea, vomiting, poor appetite, acid reflux

 

Common gastroparesis symptoms:

  • Frequent or persistent nausea
  • Vomiting (even partially digested food or liquids)
  • Poor appetite or loss of appetite
  • Feeling full despite not eating a large amount of food
  • Acid reflux
  • Upper abdominal bloating

Is there a connection between Ehlers-Danlos Syndrome and gastroparesis?

Scientists have not determined if there’s a connection between Ehlers-Danlos Syndrome and gastroparesis yet.

 

Graphic that reads "what is gastroparesis" with a picture of a stomach

 

However, current research suggests that about 30% of people with hypermobility disorders have upper gastrointestinal digestive symptoms. People with hypermobility disorders (like EDS) experience digestive issues more frequently than other people, so it’s likely that future research will help us understand how connective tissue disorders are linked to digestive issues.

 

While we don’t know why people with connective tissue disorders have more digestive issues than the general public, there is some evidence that people with hypermobility disorders may experience abnormal gastric emptying. One study found that people with hypermobility disorders experienced food moving through their digestive system too quickly, while others experienced food moving through their digestive system too slowly. Some of the patients in this study who had slow gastric emptying met the diagnostic criteria for gastroparesis.

 

Some scientists argue that people with connective tissue disorders may have symptoms that seem to be similar to gastroparesis, however, digestive symptoms may be due to other reasons, like hypersensitivity of the gut. Essentially, the gut could send signals to the brain to say that there is something wrong when body processes are technically working normally. In this situation, someone could have all the symptoms of gastroparesis like nausea, vomiting, or poor appetite, but have normal test results.

 


 

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In my clinical experience of seeing numerous patients with EDS and symptoms of gastroparesis, it seems like there could be a connection between these conditions. However, research on the link between these conditions is still evolving.

 

How to get help for Ehlers-Danlos Syndrome and Gastroparesis

As a registered dietitian who specializes in EDS, here are my suggestions on how to get help with gastroparesis.

 

Explain your symptoms to a gastroenterologist

First, book an appointment with a gastroenterologist. While you wait for your appointment, create a food and symptom journal that includes what was eaten, the approximate amounts of food eaten, and what time of day you experienced symptoms like nausea, vomiting, acid reflux, etc.

 

During your appointment with a gastroenterologist, explain what symptoms you have been experiencing, and show them your food and symptom log to help support your concerns. It may also be helpful to advocate for further evaluation. There are a handful of tests that could help identify slow gastric emptying, the most common being a gastric emptying scintigraphy.

 

If test results show issues with gastric emptying and lead to a gastroparesis diagnosis, your gastroenterologist may be able to prescribe certain medications that can help address gastric motility issues.

 

It should be noted that even if someone has all the symptoms of gastroparesis, it doesn’t mean that test results will confirm a gastroparesis diagnosis. Based on my clinical experience, I believe people may have intermittent motility issues or may have medical issues that are difficult to identify with tests that are currently available. Do not become discouraged if tests don’t show what you expect them to. Instead, advocate for additional testing and support from your healthcare team.

 

Work with a dietitian

Another important step to getting help with gastroparesis is to book an appointment with a dietitian. It’s important to see a dietitian because patients who struggle with gastroparesis often have gone months without proper nutrition due to persistent nausea, vomiting, or other symptoms. A dietitian can help identify nutrition concerns, suggest ways to correct nutritional deficiencies, and assist with gastroparesis symptom management. Dietitians can also help personalize recommendations, which makes any diet modification easier and more enjoyable to implement.

 

Managing Ehlers-Danlos Syndrome and Gastroparesis symptoms

Gastroparesis symptoms can be managed with medications, diet, lifestyle, and in some cases, procedures.

 

Medications for gastroparesis

The most common type of medication used to address gastroparesis is prokinetics. Prokinetics stimulates gastrointestinal motility, which can help food move out of the stomach more quickly. The only approved prokinetic to treat gastroparesis is called metoclopramide.

 

There are other prokinetics that are not technically approved to treat gastroparesis but may be prescribed if metoclopramide is not effective or well tolerated. These include medications like erythromycin, tegaserod, and domperidone.

 

Gastroparesis diet

The gastroparesis diet may help reduce severe gastroparesis symptoms. The gastroparesis diet mainly includes easier-to-digest and higher-carbohydrate foods because these typically are digested quite quickly. The gastroparesis diet emphasizes purees and liquids because these move through the gastrointestinal tract the quickest.

 

A graphic that says "a dietitian's guide to managing gastroparesis"

 

The gastroparesis diet also encourages people to reduce high-fat foods, high-fiber foods, and avoid eating more protein-rich foods than necessary to maintain good health. This is because high-fat, high-fiber, and high-protein meals take longer to digest, which may not be helpful for people with slower-than-normal gastric motility.

 

As a registered dietitian who often sees patients with gastroparesis, I think it is very important to personalize these recommendations to ensure they are not overly restrictive and provide enough nutrition.

 

Lifestyle habits to reduce gastroparesis symptoms

There are a few lifestyle habits that can help reduce gastroparesis symptoms.

 

Eating smaller, more frequent meals instead of a few large meals may help prevent excessive nausea and discomfort.

 

Additionally, taking a walk after mealtime may help encourage gastric motility, which can reduce symptoms like feeling uncomfortably full or nauseous.

 

Stress management may be helpful as well. While research in this area is still evolving, there are suggestions that emotional distress can worsen gastrointestinal symptoms, and vice versa.

 

Procedures for gastroparesis

While not necessary in most cases, some patients with gastroparesis require procedures to get relief from their severe symptoms.

 

One type of procedure that may be used for gastroparesis is the placement of a gastric pacemaker. Gastric pacemakers send electrical impulses to the stomach muscle to stimulate gastric emptying.

 

Another type of procedure that can be used for gastroparesis is called a pyloroplasty. A pyloroplasty is the surgical modification of the pyloric sphincter (what separates the stomach from the small intestine). Surgeons may create a larger opening to encourage food to move through the stomach more quickly.

 

 

Summary

This article explored the possible connection between Ehlers-Danlos Syndrome (EDS) and gastroparesis, a condition where food moves too slowly from the stomach to the small intestine. While research is still evolving, some studies suggest that people with hypermobility disorders (like EDS) may experience abnormal gastric emptying. The article provided tips for getting help for EDS and gastroparesis, including seeing a gastroenterologist and a dietitian and managing symptoms with medications, diet, lifestyle changes, and procedures.

 

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.

 

Are you looking for a dietitian who knows the ins and outs of Ehlers-Danlos Syndrome and other related conditions? Let’s work together! Find more information here

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