Experiencing the Unseen: A Journey Through MCAS

Two years ago, the term MCAS ( pronounced: Em – Cass) was as foreign to me as the notion of an alien language. Yet, the universe, in its mysterious ways, introduced me to Mast Cell Activation Syndrome not through a medical textbook or a doctor’s diagnosis initially but via TikTok. Yes, you read that right – the social platform known for its dance challenges and lip-sync videos became the unexpected catalyst for my journey to understanding my body’s peculiar reactions.

Creators- both patients and doctors, shared their experiences and knowledge, shedding light on a condition that was eerily reflective of my own symptoms. Despite my logical mind ticking off the symptoms they described, a part of me hesitated. I thought, “This can’t be me. I’ve only had hives a couple of times in my life and never experienced anaphylaxis.” Yet, the pieces started to fit together too well to ignore, leading me to a dual diagnosis of MCAS and Ehlers-Danlos Syndrome (EDS) in one life-changing appointment.

MCAS: A Closer Look

The Link to Ehlers-Danlos Syndrome

Research suggests that there may be a possible link between two medical conditions: Mast Cell Activation Syndrome (MCAS) and Ehlers-Danlos Syndrome (EDS). The connection appears to be stronger with hEDS, which is the hypermobile type. However, the extent and details of this relationship are still being studied. According to a recent study published in the Annals of the Rheumatic Diseases, approximately one in every three patients diagnosed with MCAS also had hEDS. The number of patients diagnosed with both conditions has increased over time as MCAS has become more recognized. The study also found that women, those with private insurance, and those among the highest income bracket were more likely to be diagnosed with both conditions. This suggests that social factors could influence the identification of this overlap syndrome.

Some providers have suggested that mast cells can affect connective tissues, which can appear like EDS. However, it is not clear whether Mast Cell dysfunction results in EDS or whether they are entirely separate conditions. It is also unclear whether EDS is causing Mast Cell dysfunction or if it is like autism and a plethora of conditions that, when combined, create the umbrella diagnosis. Research appears to be ongoing.

Managing MCAS: A Personal Battle

Treatment for MCAS is tailored to symptom management, often involving antihistamines, mast cell mediator inhibitors, and, in dire cases, corticosteroids. My regimen includes:

•  montelukast
•  fexofenadine (later switched to cetirizine due to insurance hurdles)
• cromolyn sodium in liquid form
• dietary restrictions
• lifestyle changes like not eating out and avoiding triggers

The ever-challenging Cromolyn sodium, despite its inconvenience and unpleasant taste, showed promising results—if only I could remember to take it consistently. I looked into compounded versions of this medication. Unfortunately, the convenience comes with a very inconvenient price tag that insurance won’t cover. The financial burden of potentially more convenient compounded capsules is, unfortunately, prohibitive.

The low Histamine Diet

Say goodbye to enjoyment, Im kidding, not really

The foundation of a low-histamine diet is avoiding foods that typically contain high levels of histamine or trigger the body to release histamines. Histamine is a natural chemical that has a role in immune system function, digestion, and central nervous system functioning. Consuming histamine-rich foods can cause symptoms such as headaches, skin irritation, digestive issues, nasal congestion, and more, particularly for individuals like me with histamine intolerance or conditions like MCAS. 

By limiting the intake of high-histamine foods, the aim of a low-histamine diet is to reduce these symptoms. It’s important to note that each and every individual’s tolerance can vary greatly, and what triggers symptoms in one person may not affect another. Here’s a general overview of foods to avoid and those considered to be low in histamine:

As someone who loves cheese, would rather eat cheese platters and charcuterie for meals than actual meals, this list is heartbreaking.

It’s also beneficial to work with a healthcare professional or a dietitian when following a low histamine diet to ensure nutritional balance and adequacy, especially since this diet can be restrictive. They can provide personalized advice and adjustments based on your health status, symptoms, and dietary needs. I would also suggest nutritional testing.

Anecdotes from the Front Lines

Navigating Mast Cell has been a journey of highs and lows. Prednisone, for instance, was a double-edged sword, offering relief yet bringing along mood swings and an unwelcome “moon face.” This treatment is only for short-term use. Think less than a week. Steroids have their own complications that make their benefits…well…not entirely worth the hassle.

Gastrointestinal issues, primarily triggered by onions, turned dining into a high-stakes game of Russian roulette. Over time, my tolerance for triggers has diminished, transforming my dietary landscape and making eating out a luxury fraught with peril. Many times, I have asked the waitstaff if this or that product has onion. They come back and tell me it doesn’t; the GI system determined that was a lie. Part of me understands that, as waitstaff, you don’t have the time; the other part, allergies, are serious. Medical conditions are serious. If you can’t be sure, just say that. I will order something that I know will be safe. 

The Ongoing Quest for Answers

Research into Mast Cell dysfunction is beginning to grow, with efforts focused on understanding its genetic underpinnings, refining treatments, and solidifying diagnostic criteria. The potential link with EDS remains a particular point of interest, promising to unravel more about how these conditions intersect.

A partner in the fight

My biggest recommendation is to find a partner in the cause. Be it someone on a community message board, a friend, a partner, or a family member. Support is key. For me, my husband is my person. He reminds me to take my meds(hello, ADHD), warns me when he sees food with onion in it and gives me the emotional support I need when I get exposed. He encourages me to rest often, not be so hard on myself, and to make peace with my situation. I am not saying I am great at it, but with his help, I am improving. Having a support person who is not judgemental and who is there through it all is, quite honestly, the only reason I can cope with the multitude of issues I have. 

Conclusion

Living with MCAS is akin to walking a tightrope, constantly balancing between managing symptoms and maintaining a semblance of normalcy. My journey, from initial discovery on social media to navigating the complexities of treatment and dietary restrictions, reflects the broader challenges faced by the MCAS community. Yet, it’s a journey of empowerment, understanding, and hope. As research progresses, so too does our collective knowledge, offering a beacon of hope for those of us looking to reclaim our lives from the clutches of Mast Cell Activation Syndrome.

Reflecting on This Journey Together

Sharing this story isn’t just about shedding light on my personal battle; it’s about connecting with others who tread similar paths, offering a hand in solidarity and understanding. Whether you’re embarking on this journey or supporting someone who is, remember: you’re not alone. Together, through awareness, education, and research, we can navigate the uncertainties of MCAS and find solace in our shared experiences.

Design by Djinni Whispers

Resources from the American Academy of Allergy Asthma & Immunology (AAAAI) and other medical publications can be beneficial for more detailed information on mast cell activation syndrome (MCAS), its symptoms, treatment options, and ongoing research.

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