Ehlers-Danlos Syndrome and Gastroparesis

Written By Jeanne Smith

Ehlers-Danlos syndrome (EDS) is actually a group of disorders that affect the body’s connective tissue. There are 13 known types of EDS, and each is associated with different symptoms and presentations.

Connective tissues give us support and structure. The tissues are made of structural proteins, like cartilage. These connective tissues are located throughout the body,  so EDS can affect different areas on different people.

The most common type of EDS is the hypermobile type, abbreviated hEDS, which happens to be the only one that doesn’t have its genetic variant identified yet. Someone who meets some, but not all, of the requirements for a hEDS diagnosis may be diagnosed with Hypermobility Spectrum Disorder (HSD). Throughout this article, I’ll be referring mainly to the two of these together as hEDS/HSD.

Constipation can be a consequence of Ehlers-Danlos Syndrome

Gastrointestinal problems are very common in hEDS/HSD. One study found that close to 90% of those with hEDS suffer from GI issues. Connective tissue is part of the GI tract, so gut motility, or movement, may be affected.  This gut motility can either be too fast, resulting in diarrhea, or too slow, causing constipation. Some people may alternate between diarrhea and constipation. 

A slower gut motility can occur in the stomach, small intestine, colon, or all 3. In the case of slow motility, people tend to feel full often and then eat less. Slower small bowel and colon motion is linked with constipation.

Constipation is a common symptom of hEDS/HSD. Studies have shown that this can occur in 12-39% of patients. Anyone who has suffered with even occasional constipation knows how uncomfortable it can feel.

Possible causes of constipation

The exact cause for constipation has not been determined in these patients. Studies done up to this point have been few and small in size. There are some likely reasons that may be contributing to the constipation though. 

  • One is the slow gut motility mentioned above. Picture this as cars moving at only 5 mph on the highway.

  • Another could be pelvic floor dysfunction (PVD). What is that you may be wondering?

    • The pelvic floor acts as a support for our pelvic organs, and it contains muscles that coordinate to allow us to hold in our urine and stool and then let either out when the time is appropriate. Pelvic floor dysfunction happens when the muscles are not working well together.

    • The result of that can be incontinence and/or the inability to have a complete bowel movement. One sign of PFD is straining very hard to have a bowel movement. The stool stays in the rectum longer and gets drier. Eventually there’s enough to cause a backup or constipation.

  • Another possible cause of constipation in hEDS/HSD is a lower sensation in the rectum called rectal hyposensitivity. Problems with sensation or feeling are quite common in Ehlers-Danlos.

  • Ehlers-Danlos is highly associated with neurodivergence. The way this can lead to gut issues is through limited fiber intake and a limited variety of foods. Many people with ADHD or autism have very particular food preferences or sensory limitations around food. That’s a topic for another post. Stay tuned.

  • Pain medications used for muscle and joint pain associated with hEDS/HSD may have a side effect of constipation.

  • One more reason constipation may happen in this population is the daily pain or fatigue or both, which can really limit activity. Limited movement throughout the day can lead to slower moving bowels and constipation. 

Most likely, cases of constipation are caused by overlapping reasons and may involve more than one of these.

How to improve the symptoms

Each case is unique and the techniques used to treat constipation will work for some and not for others. It’s key to work with a knowledgeable registered dietitian nutritionist who can use experience to find the right treatment options.

Often, it takes a combination of various remedies and some trial and error before the best treatment combo is found. Some things to consider are:

  • Adjusting the fiber type or increasing fiber in the diet.*

  • Ask your GI doctor for a pelvic floor examination and a referral to a pelvic floor physical therapist if needed.

  • Making sure fluid intake is adequate

  • Kiwifruit (2/day may work)

  • Psyllium fiber *

  • Adding more fruits and vegetables daily

  • Choosing whole grain products over white flour for constipation prevention*

  • Medications suggested by your physician

  • High fiber or constipation remedy smoothies (Ask me)

  • Gentle movement like walking or yoga, or at least sitting less

  • Warm beverages in the morning

  • Eat large enough meals to stimulate your colon, especially in the morning.

*Caution as added fiber may make symptoms worse in some cases. Work with a dietitian.

If you’re having trouble incorporating these ideas into your diet, reach out to a registered dietitian nutritionist for help with that. Some people have eating routines that are difficult to change or food preferences that are quite limiting. That’s when help is especially recommended.

Reach out to me with any questions by email at jeanne@jwsnutrition.com and take a look at my services and pricing.


Jeanne Smith
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Gastroparesis and Constipation - Have both?