Ehlers Danlos Syndrome (EDS) exists along a spectrum of inherited disorders affecting connective tissue1. Connective tissue supports, protects, and gives structure to the muscles, bones, and organs. Therefore, abnormalities can impede normal physiological functioning. A main component of connective tissue is collagen, which is the specific protein implicated in EDS1,2. Despite differences between EDS subtypes, individuals with the condition typically all present with skin hypersensitivity, tissue fragility (e.g., easy bruising, impaired wound healing), and joint hypermobility1; these issues have the potential to cause significant pain and symptoms associated with many bodily systems. There is no treatment for EDS; rather, medications, nutrition, physical therapy, and complementary therapies can aid in management and ease symptoms2,3. Because of the widespread role and presence of connective tissue in the body, it makes sense that many individuals with EDS present with gastrointestinal complaints. Here, we will address some of the more commonly seen GI issues and their relationship with EDS.
Any problem with connective tissue can impact the systems and structures it supports, with the digestive tract being one of them. In EDS, individuals often present with symptoms including or relating to dysmotility (e.g., slowed gastric emptying, gastroparesis), heartburn/reflux, abdominal bloating, pain, early satiety, nausea, vomiting, constipation, and/or diarrhea3. Functional GI disorders, such as irritable bowel syndrome, may also be diagnosed in this population3,4. Further, being that treatment for EDS is more supportive rather than curative in nature, the side effects of medications may exacerbate discomfort (i.e., constipation, diarrhea)3.
Also worth mentioning is the impact on mental health. Those with EDS may be more likely to suffer from chronic stress, anxiety, and/or depression4, which ultimately contribute to GI symptoms. This is where the term “nervous stomach” may sound familiar. When we are stressed, our digestion tends to suffer. Similarly, people with EDS may find that certain foods can trigger GI symptoms, especially in times of stress, and attempt to manage them with elimination diets, such as low-FODMAP5. Under the guidance of a registered dietitian, making dietary modifications can be safe and helpful in providing relief; however, when patients try to do this on their own, they may unnecessarily remove certain foods from their diets. Not only does this increase the probability for nutrient deficiencies, but it also impacts the gut microbiome, which relies on a myriad of foods to sustain its integrity. Unfortunately, it is understandable how disordered eating habits and or eating disorders can afflict the EDS population. Finally, research has shown that celiac disease is a common comorbidity with EDS5.
Dietary and lifestyle modifications can help address the GI conditions that accompany EDS. Laura Cipullo and her team of registered dietitians are experts in the field of nutrition and its effectiveness in managing GI symptoms to improve quality of life.
References
[1] What is eds?. The Ehlers Danlos Society. (2024, April 30). https://www.ehlers-danlos.com/what-is-eds/
[2]What is Ehlers-Danlos syndrome?. Cleveland Clinic. (n.d.). https://my.clevelandclinic.org/health/diseases/17813-ehlers-danlos-syndrome
[3] What is Ehlers-Danlos syndrome?. Dietitians On Demand. (2024, April 9). https://dietitiansondemand.com/what-is-ehlers-danlos-syndrome/
[4] Thwaites, P. A., Gibson, P. R., & Burgell, R. E. (2022). Hypermobile Ehlers–Danlos syndrome and disorders of the gastrointestinal tract: What the gastroenterologist needs to know. Journal of Gastroenterology and Hepatology, 37(9), 1693–1709. https://doi.org/10.1111/jgh.15927
[5] Fikree, A., Chelimsky, G., Collins, H., Kovacic, K., & Aziz, Q. (2017). Gastrointestinal involvement in the Ehlers–Danlos syndromes. American Journal of Medical Genetics Part C: Seminars in Medical Genetics, 175(1), 181–187. https://doi.org/10.1002/ajmg.c.31546
References (AMA)
- The Ehlers-Danlos Society. What are the Ehlers-Danlos Syndromes? The Ehlers Danlos Society. Published 2017. Accessed May 31, 2024. https://www.ehlers-danlos.com/what-is-eds/
- Cleveland Clinic. Ehlers-Danlos Syndrome: Symptoms, Causes, Treatments. Cleveland Clinic. Published June 25, 2018. https://my.clevelandclinic.org/health/diseases/17813-ehlers-danlos-syndrome
- What is Ehlers-Danlos syndrome? Dietitians on Demand. Published April 9, 2024. Accessed May 31, 2024. https://dietitiansondemand.com/what-is-ehlers-danlos-syndrome/
- Thwaites PA, Gibson PR, Burgell RE. Hypermobile Ehlers–Danlos syndrome and disorders of the gastrointestinal tract: What the gastroenterologist needs to know. Journal of Gastroenterology and Hepatology. 2022;37(9):1693-1709. doi:https://doi.org/10.1111/jgh.15927
- Fikree A, Chelimsky G, Collins H, Kovacic K, Aziz Q. Gastrointestinal involvement in the Ehlers-Danlos syndromes. American Journal of Medical Genetics Part C: Seminars in Medical Genetics. 2017;175(1):181-187. doi:https://doi.org/10.1002/ajmg.c.31546
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