Welcome back to the Bendy Club blog! This week, we’re exploring a topic that affects many in our community: gastrointestinal (GI) concerns in Hypermobility Spectrum Disorder (HSD) and Ehlers-Danlos Syndrome (EDS) patients. Understanding these issues is crucial for improving your digestive health and overall quality of life.
The GI-HSD/EDS Connection
Did you know that Gastrointestinal issues are common among those with HSD and EDS? The connective tissue abnormalities that characterize these conditions can affect the entire digestive tract, leading to a range of issues from mild discomfort to severe digestive problems. Both the connective tissue that is needed for the passive movements necessary for digestion and the nerves of the digestive tract can be affected leading to slower movement (gastroparesis), faster movement (IBS), or just a more sensitive digestive tract (food sensitivities/mast cell issues).
Why This Matters
Gastrointestinal problems can significantly impact your daily life, causing pain, discomfort, and nutritional deficiencies. Identifying and managing these symptoms is key to enhancing your well-being and preventing long-term complications.
Common Gastrointestinal Issues in HSD/EDS Patients
- Gastroparesis/ dysmotility: Delayed stomach emptying can cause nausea, vomiting, bloating, and abdominal pain.
- MCAS: Mast cell disorders can greatly impact GI function. Beyond food allergies and food sensitivities, activation of mast cells can have a direct impact on the GI tract increasing inflammation and causing symptoms of bloating, pain, etc.
- POTS: Dysautonomia can also have a significant impact on GI function. Increased fight or flight response can alter the motility of the GI tract causing delayed emptying.
- Irritable Bowel Syndrome (IBS): Characterized by chronic abdominal pain, bloating, and altered bowel habits, IBS is prevalent in hypermobile individuals.
- Gastroesophageal Reflux Disease (GERD): Acid reflux and heartburn are common due to lax connective tissues in the esophagus and Mast Cell Dysfunction. There is also some data showing that hypermobile individuals are more likely to have a hiatal hernia which can lead to GERD symptoms.
- Chronic Constipation: Often due to slow bowel motility and connective tissue laxity.
- Food Intolerances: Many patients report sensitivities to certain foods, which can exacerbate GI symptoms.
Recognizing the Symptoms
Understanding the signs of GI problems can help in early diagnosis and treatment. Look out for:
- Chronic abdominal pain and cramping
- Bloating and gas
- Nausea and vomiting
- Frequent heartburn or acid reflux
- Diarrhea or constipation
- Difficulty swallowing
- Unintentional weight loss
Action Steps for Managing GI Issues
- Seek Specialized Care: Work with a gastroenterologist or other medical practitioner familiar with HSD and EDS. They can provide targeted treatment plans to address your specific GI concerns. In my experience gastroenterologist have been more helpful in terms of diagnosis performing tests like endoscopy, colonoscopy, barium swallow, or gastric emptying studies, but less helpful in terms of treatment options beyond simple Acid Blockers.
- Dietary Adjustments: Keep a food diary to identify triggers and work with a nutritionist to develop a diet that minimizes symptoms. Low-FODMAP diets can be recommended for IBS. The most effective way to determine food sensitivities is through a well performed elimination diet. While this is a very restrictive diet to follow it can allow someone to really find out which specific foods (or combination of foods) are causing symptoms. This is best done in conjunction with a medical practitioner, and should only be followed for a short period of time.
- Hydration: Stay well-hydrated to help maintain bowel regularity and prevent constipation. Electrolytes specifically sodium can help improve symptoms of POTS or dysautonomia improving the GI side effects.
- Small, Frequent Meals: Eating smaller meals more frequently can help manage symptoms of gastroparesis and prevent overeating, which can exacerbate GERD.
- Medications: Your doctor may prescribe medications to help manage symptoms such as acid reducers for GERD, prokinetics for gastroparesis, or antispasmodics for IBS. A medication called Cromolyn sodium can be used for those dealing with IBS due to mast cell dysfunction. Cromolyn is a mast cell stabilizer and can help to seal the intestinal border. Other options include supplements like D-Hist, Quercetin, or Vitamin C to help stabilize mast cells.
- Supplements: Enteraid–D can be very helpful for those suffering from IBS that is causing diarrhea or other disorders that have damaged the gut lining. For those with constipation a fiber supplement can be more beneficial providing bulk to the stool.
- Stress Management: Stress can exacerbate GI symptoms, so incorporate relaxation techniques such as meditation, deep breathing, or gentle yoga into your routine.
- Treat comorbidities: Chronic pain, dysautonomia, and mast cell dysfunction can all cause GI issues. Make sure to treat HSD and EDS comprehensively to get the best results.
Patient Story
One of our community members, Lisa, struggled with chronic abdominal pain and severe bloating for years. Initially misdiagnosed with IBS alone, a more comprehensive evaluation revealed she had HSD, which was contributing to her GI issues. With a tailored treatment plan that included dietary adjustments, hydration strategies, and supplementation to help with mast cell dysfunction, Lisa experienced significant relief. Her story underscores the importance of understanding the GI-HSD/EDS connection and seeking appropriate care.
Share Your Journey
We encourage you to share your experiences and connect with others on our social media platforms. By building a supportive community, we can help each other navigate the challenges of living with HSD and EDS.
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Thank you for being part of the Bendy Club. Together, we can make a difference!
Warm regards,
The Hypermobile Solutions Team
References
Gastrointestinal involvement in the ehlers-danlos syndromes (for non-experts). The Ehlers Danlos Society. (2022, March 15). https://www.ehlers-danlos.com/2017-eds-classification-non-experts/gastrointestinal-involvement-ehlers-danlos-syndromes/
Fikree A;Chelimsky G;Collins H;Kovacic K;Aziz Q; (n.d.). Gastrointestinal involvement in the ehlers-danlos syndromes. American journal of medical genetics. Part C, Seminars in medical genetics. https://pubmed.ncbi.nlm.nih.gov/28186368/
Minutello, K. (2023, January 2). Cromolyn sodium. StatPearls [Internet]. https://www.ncbi.nlm.nih.gov/books/NBK557473/
Home. The Ehlers Danlos Society. https://www.ehlers-danlos.com/
What is HSD?. The Ehlers Danlos Society. https://www.ehlers-danlos.com/what-is-hsd/
What is eds?. The Ehlers Danlos Society. https://www.ehlers-danlos.com/what-is-eds/
Jovin, D., Atwal, P., Herman, K., Block, N., Maxwell, A. J., Mitakides, J., Maitland, A. M., Saperstein, D., Hamilton, M., Schofield, J., Koby, M., Klinge, P., McElroy, A., Bluestein, L., Chopra, P., Tishler, J., Pocinki, A. G., Varga, J., Dempsey, T., … Lane, K. (2020). Disjointed: Navigating the diagnosis and management of Hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders. Hidden Stripes Publications, Inc.
Smith, C., & Wicks, D. (2017). Understanding Hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorder: (previously known as Ehlers-Danlos Syndrome Hypermobility Type & Joint Hypermobility Syndrome, respectively). Redcliff-House Publications.
Cox, C. (2022). Holding it all together when you’re Hypermobile. Journey2Joy
Disclaimer
This blog is for general informational purposes only and does not constitute the practice of medicine, nursing, or other professional health care services, including the giving of medical advice, and no provider/patient relationship is formed. The use of information on this blog or materials linked from this blog is at the user’s own risk. The content of this blog is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard or delay in obtaining medical advice for any medical condition they may have and should seek the assistance of their health care professionals for any such conditions.