What are mast cell disorders?
Everyone has mast cells throughout their body. When a person comes into contact with a chemical or substance to which they may react, their mast cells are activated. They degranulate and give off histamine and other chemicals, called mediators. The histamine and other chemicals pumped into their system by the degranulating mast cells cause the person to exhibit the symptoms we typically associate with an allergic reaction—sneezing, watery eyes, rashes, hives, itching, tongue swelling, difficulty breathing, runny nose, skin flushing, and more.
Mast cell disease(s) (MCD) is the term used by mast cell specialists in the U.S. and internationally for all mast cell diseases and it includes every person suffering from any type of mast cell disease (see TMS for a Cure for more information.)
In a mast cell/mast cell activation related disorder, something has gone wrong with the mast cells. There may be too many of them, they could be irregularly shaped, or they could be degranulating—as in mast cell activation syndrome—and be over-active for unknown reasons. A person with a mast cell/mast cell activation disorder may experience severe and life-threatening reactions after exposure to even very small amounts of a chemical or substance. Individuals with mast cell activation related disorders need to avoid exposures to the chemicals and the triggers to which they react.
I’ve heard there’s a connection between mast cells and COVID—is this true?
Current research has shown that the COVID-19 pathology of infection is linked to an over-response of immune cells that include mast cells. Recent studies have also shown that mast cells are involved in the pathogenesis—the origination and development—of COVID-19: elevated numbers of mast cells as well as significantly higher levels of specific chemicals that indicates systemic mast cell activation in patients with COVID-19 who were studied (click here, here, and here to read the research articles.)
There is also current research on Long COVID and its link to mast cell activation symptoms (click here and here to read about this research.)
What does this mean?
Doctors (see J. Tsafrir, MD and T.C. Theoharides, MD) are urging that healthcare professionals (medical doctors, psychotherapists, psychologists, psychiatrists, social workers, nurses) be aware of mast cell activation syndrome (MCAS) and learn the presenting symptoms of mast cell activation related disorders. Recognizing and understanding mast cell activation and mast cell activation related disorders may suggest routes to effective therapy (click here to read article.)
What is Long COVID?
According to the World Health Organization, Long COVID refers to the array of long-term symptoms that some people experience after having COVID. Research has shown that as many as 50% of people who have had COVID report having Long COVID symptoms (see here). Symptoms include: fatigue, breathlessness, and cognitive dysfunctions such as confusion, forgetfulness, lack of mental focus and clarity (see WHO, 2022.) Symptoms can persist from when a person first gets COVID, or can develop after a person recovers from COVID, or can come and go or relapse over time and can affect a person’s ability to work and to perform activities of daily living (see here, here, and here)
Are mast cell disorders the same as chemical sensitivities or MCS?
Mastocytosis, mast cell activation syndrome (MCAS), systemic mast cell disorder are all medical diagnoses. Multiple Chemical Sensitivity (MCS) is not a medical diagnosis (see here). Mastocytosis, MCAS, and mast cell related disorders share many of the same symptoms. These symptoms typically include chemical sensitivity. Current research (see T.C. Theoharides, MD, here and here) has shown that the reactions to triggers individuals experience, including being sensitive to multiple chemicals, have a basis in mast cell function and mast cell degranulation.
What do I do?
If you feel that you may have a mast cell related disorder, please contact a physician to receive medical help. The information presented here is not medical advice and is in no way a substitute for receiving medical advice and treatment from a doctor.
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Learn More:
About Mast Cells
- The Role of Mast Cells in our Health
- Mast Cell Diseases
- Mast Cell Function
- Mast Cells and Anaphylaxis
- Mast Cells & You
About Mast Cell Disorders
- Brigham and Women’s Mastocytosis Center (for mast cell disorders)
- Mast Cell Disorders of GI Tract & MCAS Case Study (not only GI tract info)
- The Mast Cell Disease Society USA
- Mastocytosis Society Canada (MSC)
- Mast Cell Action (UK-based supports for MCAS)
- “The Mastocytosis, MCAS, and IA Patient Experience,” by MSC
- video: My Mystery Symptoms, Dr. Theoharides
- video: Mast Cell Activation Symptomatology, The Mastocytosis Society USA (with Dr. Theoharides, Dr. Castells, Dr. Akin, and Dr. Greenberger)
- video: No Allergy but Still Reacting, Dr. Anne Maitland
- video: Understanding Mast Cell Activation Disorders, National Institute of Allergy and Infectious Diseases (NIAID)
About Environmental Illness (EI)
- 8 Environmental Factors that Affect Health
- Environmental Illness: Overview
- How Environmental Health Impacts our Health
- Environmental Illness
- Chronic Stress
- Infectious Disease in Environmental Health
- Pivotal Interfaces of Environmental Health
Our Services
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Expanding Horizons
Supports
- Emergency Care for Patients with Mast Cell Disorders Brochure, (The Mastocytosis Society USA)
- Emergency Room Protocols – a handy reference guide for patients with Mast Cell Disorders, (The Mastocytosis Society USA)
- Mastocytosis & Mast Cell Activation Syndrome Information Pamphlet for patients, care givers, and medical professionals, (Mastocytosis Society Canada)
- UK Mastocytosis Support (provides information, resources, links)
- The Mast Cell Disease Society USA
- Mastocytosis Society Canada
- Safe Cleaning Products, Women’s Voices for the Earth
- More Links (household, clothing, cooking, safer products…)
Research
- T.C. Theoharides, PhD, MD (on mast cells & mast cell activation related illnesses including CFS, IBS, Mastocytosis, MCS, MCAS, arthritis, migraine, MS, inflammation, autism, and more – Tufts University)
- The Environmental Sensitivities Resource Team (chemical sensitivties focused information and research – James Madison University)
Toxins in our Lives
- “Toxic Materials,” Health Care Without Harm
- “Facts on Fragrance,” WVE
- Invisibles: Plastic Inside Us, orbmedia.org
- “Fragrance Chemicals,” Health Care Without Harm
- Deep Clean: What the cleaning industry should be doing to protect your health, WVE
- Tips on avoiding toxic chemicals, WVE
Pesticide Information
- Beyond Pesticides – Protecting Health and the Environment with Science, Policy, and Action
- Gateway on Pesticide Hazards and Safe Pest Management
- Northwest Center for Alternatives to Pesticides
- “Diseases Linked to Pesticides,” from Pesticides and You quarterly publication
Websites
- Grassroots Environmental Education
- Cleaner Indoor Air Campaign
- Women’s Voices for the Earth
- Sharing the Knowledge, T.C. Theoharides, PhD, MD, FAAAAI
- My Chemical-Free House: A Guide to Building a Chemical-Free, Mold-Free House
Articles
- “Mastocytosis: Classification, Diagnosis, and Clinical Presentation,” by M. Castells, MD, Brigham & Women’s Hospital, Harvard Medical School
- “Atopic Conditions in Search of Pathogenesis and Therapy,” by T.C. Theoharides, PhD, MD (an important article on the role of mast cells in MCAS, MCS, CFS, fibromyalgia, asthma, and more)
- “Mast Cell Activation Syndrome: A Newly Recognized Disorder with Systemic Clinical Manifestations,” by M. Castells, MD, et al, Boston, MA
- “Mast Cell Activation Disease: A Concise Practical Guide for Diagnostic Workup and Therapeutic Options,” by G. Molderings, MD, et al
- “Could the Brain’s Mast Cells be Causing Chronic Fatigue Syndrome,” by Cort Johnson (a review of Dr. Theoharides’ published research)
- “Chronic Fatigue Syndrome and Mitochondrial Dysfunction,” by S. Myhill, N. Booth, and J. McLaren-Howard
- “Mast Cells and Irritable Bowel Syndrome: From the Bench to the Bedside,” by Lei Zhand, Jun Song, and Xiaohua Hou
- “Contaminating our Bodies with Everyday Products,” by Nicholas Kristof (NY Times)
- “Fragrance Chemicals,” Health Care Without Harm
- “Not Just Dirt: Toxic Chemicals in Indoor Dust,” the National Resources Defense Council – download pdf
Blogs
Books
- Mastocytosis: An Issue of Immunology and Allergy, (Mariana Castells, MD, PhD)
- Chemical Sensitivity, (Sherry Rogers, MD)
Education & Training
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The Counseling Center at CELA is not endorsing any of the above links or their content and is providing these links as informational resources only.