Preprint / Version 1

Patient-Reported Trigger Patterns in Mast Cell Activation Syndrome (MCAS)

##article.authors##

  • Michael-Christopher Suman Student Researcher

DOI:

https://doi.org/10.58445/rars.2952

Keywords:

Mast Cell Activation Syndrome, MCAS triggers, neuroinflammation, patient-led research, chronic illness management, environmental sensitivities

Abstract

Mast Cell Activation Syndrome (MCAS) is a complex disorder characterized by episodes of multisystem allergic-like symptoms due to inappropriate mast cell mediator release. Identifying patient-reported triggers for MCAS is critical, as exposures ranging from foods to environmental factors can precipitate severe reactions. This study compiles data from recent patient-led surveys and real-world datasets to analyze common trigger types, their prevalence, and patterns related to demographics and comorbidities. Methods: We reviewed publicly available survey results from MCAS patient populations, notably large-scale surveys conducted by patient advocacy organizations, and relevant literature on MCAS triggers. Results: Nearly all MCAS patients report multiple triggers, with food-related triggers being the most prevalent (approximately 71% report dietary limitations, and 41% are restricted to 20 or fewer foods). Environmental triggers such as temperature changes (heat or cold) and physical stimuli (pressure or friction) are frequently cited, as are chemical exposures (fragrances) identified as “most problematic” by many patients. Emotional and physical stressors are also common triggers, and about 38% report insect venom (bee stings) as a trigger. MCAS predominantly affects women (around 65–70% of patients), and many patients have co-occurring conditions (such as Ehlers-Danlos syndrome or dysautonomia) that may intersect with trigger sensitivity. Discussion: The findings underscore that MCAS patients often must avoid a broad array of triggers across food, environmental, chemical, and emotional domains, contributing to significant lifestyle limitations. Trigger avoidance strategies and awareness are vital in management, and patient-led data highlight needs for better support and understanding from healthcare providers. Conclusion: Patient-reported data reveal clear patterns of prevalent triggers in MCAS, with food triggers and chemical sensitivities being especially widespread. These insights, originating from patient-driven research, emphasize the importance of individualized trigger management in improving quality of life for MCAS patients.

References

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Jennings, S., Slee, V. M., Finnerty, C. C., Hempstead, J. B., & Bowman, A. S. (2021). Symptoms of mast cell activation: The patient perspective. Annals of Allergy, Asthma & Immunology, 127(4), 407–409. https://doi.org/10.1016/j.anai.2021.07.004

Miller, C. S., & Palmer, R. F. (2021). Mast cell activation may explain many cases of chemical intolerance. Environmental Sciences Europe, 33(1), 129. https://doi.org/10.1186/s12302-021-00570-3

The Mast Cell Disease Society, Inc. (2019). Mast Cell Activation Syndrome patient survey (AAAAI 2019 poster abstract). Journal of Allergy and Clinical Immunology, 143(2 Suppl), AB427.

Weinstock, L. B., Pace, L. A., Rezaie, A., Afrin, L. B., & Molderings, G. J. (2021). Mast cell activation syndrome: A primer for the gastroenterologist. Digestive Diseases and Sciences, 66(4), 965–982. https://doi.org/10.1007/s10620-020-06264-9

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Posted

2025-08-24

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