Bowel issues and mast cell symptoms are some of the first signs of EDS and symptomatic hypermobility.

This page is dedicated to research and information about these challenges.

In EDS and symptomatic hypermobility spectrum disorders, the mast cells of the body are “twitchy” (Dr. Iweala, UNC 2019). This means they react, or activate, much much easier than a typical body, exacerbating inflammation and symptoms for triggers no one else experiences.  How mast cells are being provoked and through which antibody pathway, can vary broadly. “Mast Cells are not One-Trick Ponies.” (Maitland, “Allergy & Immunology” Echo Summit, 2022).  This makes diagnosis and treatment plans an overly complex process that CAN BE SIMPLE.

Experts (cited further below) reiterate that a careful examination of the patient’s history and symptom reports are just as important, if not more so, than test results. This is because current testing capabilities are simply not sensitive enough to catch the appropriate data for diagnosis in MCAS. The fancy jargon is, they are not sensitive enough to catch non IgE mediated reactions (2022), and most MCAS pathways for most patients are NOT IgE mediated. Recent research findings securely fix the EDS/HSD in a category of some kind of immune dysregulation; likely what is fundamentally destabilizing cell bonds.

Gastro symptoms in EDS are nearly always being caused by MCAS, or exacerbated by it. From mast cell reactions and/or histamine intolerance to foods and food additives in childhood, chronically irritating and destroying healthy mucus, bacteria, and tissue. MCAS reactions secrete chemicals that attack small nerve fibers AND connective tissue! Symptoms may be mild to severe, causing bloating, rashes, diarrhea, constipation AND mood and behavioral issues as a result of the unique ways the brain attempts to cope with mast cell activation. 

Over time, this reactivity causes damage to the gut that then contributes to inflammation in the rest of the body. Other GI complications related to motility, vascular compression and unstable tissues in the internal organs all struggle to reach balance without MCAS intervention.

Untreated mast cell disorders lead to global complications in the body. If you suspect a mast cell complication in yourself or your child, seek out an EDS aware immunologist immediately and advocate for thorough testing and careful review of your FULL history, including all of the other systems that can indicate provoked mast cell involvement. 

Mast Cells by Dr. Anne Maitland

This Mast Cell Awareness article concludes with a video review of mast cell activation by one of the leading experts in MCAS, Dr. Anne Maitland. Dr. M is also a contributor in the book Disjointed (see patient resources page). 

Mast Cell Disorders in Ehlers-Danlos Syndromes – Academic

Mast Cell Disorders in Ehlers-Danlos Syndromes – non academic

Mast Cell Regulation and Irritable Bowel Syndrome

Gastrointestinal Involvement in the Ehlers-Danlos Syndromes – Academic

Gastrointestinal Involvement in the Ehlers-Danlos Syndromes – non academic

Mast Cells in Gastrointestinal Disease – Academic

Disclaimer: The information contained on this site and the supporting attachments provided by Rachel Lee Patient Advocacy Consulting are for educational purposes only. Although we have performed extensive research regarding medical conditions, treatments, diagnoses, protocols and medical research, the staff of Rachel Lee Patient Advocacy Consulting are not licensed members of the North Carolina Medical Board or any clinical affiliates including but not limited to the NC Board of Physical Therapy Examiners, the NC board of Licensed Professional Counselors, or the NC board of Dietetics/Nutrition. Information provided by members of Rachel Lee Patient Advocacy Consulting should not be considered a substitute for the advice of a licensed medical doctor, counselor, therapist or other licensed clinical practitioner in handling your medical affairs.