Gastroenterology & Mast Cell Activation
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.
Podcast with Dr. Bluestein, co-host Jennifer Milner and the incredible Dr. Anne Maitland!
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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 a complex process. 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 non IgE mediated reactions (2022). Studies at the University of North Carolina and other research groups worldwide are pointing towards a type autoimmune component in autonomic dysfunction as well, tying POTS and mast cell inflammation together very closely in the process of stabilizing a patient.
There is no exact test for mast cell activation syndrome (MCAS), a syndrome which can become a full fledged co-condition of EDS. Patients and physicians should also become educated on the frequency of Mast Cell Activation Dysfunction in EDS, a DX currently used for patient’s with observable symptoms that can be very severe, a history and positive response to treatments, but who do not have the classic MCAS positive tests. These patients may have remarkable neurological disorders, anxiety, headaches, polyneuropathy, etc., and irritable bowel syndrome with documented reactions to foods but no IgE mediated allergies (typical tests for skin and blood serum). Doctor’s Matiland, Francomano and Hakim recently spoke on the importance of recognizing these symptoms in children and helping them make changes to slow inflammation as early as possible so that more severe symptoms and autoimmune disorders are less likely to develop, (“Allergy & Immunology”, ECHO Summit, 2022).
Gastro symptoms often begin as a result of mast cell reactions and/or histamine intolerance to foods and food additives in childhood. Symptoms may be mild to severe, causing bloating, rashes, diarrhea, constipation and mood and behavioral issues . Over time, this reactivity causes damage to the gut that then contributes to inflammation in the rest of the body. Other GI complications are related to motility and unstable tissues in the internal organs. More below.
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.
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).
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.