MCAS

Living with Mast Cell Activation Syndrome (MCAS): A Comprehensive Patient Guide by A Patient 

 

Hi, my name is Cynthia, and I'm from Northern Virginia. I've been living with long COVID since March 2020. Before I got sick, I was a very involved mom and business owner, running two businesses from home while homeschooling my young son. I was also an active volunteer at nonprofits serving low-income or minority women in the community.

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In May 2020, I had my first long COVID incident that sent me to the ER. That night, I experienced symptoms like a racing heart, tight jaw, and temporary paralysis of my mouth, arms, and legs. Despite numerous hospital visits and a rapid decline in my health, medical professionals often dismissed my symptoms as anxiety. By September, I had been diagnosed with a range of conditions, including starvation, metabolic acidosis, and dehydration, among others. I lost 50 pounds in just 4 months and became wheelchair dependent. Yet, medical staff continued to dismiss my symptoms, which led me to explore other avenues for diagnosis and treatment. One of those severe illnesses was Mast Cell Activation Syndrome (MCAS).

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Understanding MCAS
Mast Cell Activation Syndrome (MCAS) is a condition where mast cells inappropriately release chemical mediators, resulting in a range of symptoms like skin rashes, digestive issues, and anaphylaxis. Sometimes mast cells can be activated or triggered by various factors such as infections, medications, insect stings, fragrances, stress, exercise, and food. People with MCAS often experience frequent allergy symptoms and episodes of anaphylaxis without a clear cause. 

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Diagnosis
Testing for MCAS is an often vague, barely effective complicated process involving usually tryptase levels, and urine tests. Occasionally a biopsy test. However, the tests can be completely wrong. Especially if you're not in a flare during the testing period. In my case, my second allergist had me go off of my antihistamines, which I need to eat daily without landing in the ER, to be tested. Causing a horribly, miserable experience only for my tryptase test to come back negative. The fact that I was so severe, didn't make it an easier path to diagnosis. 

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Given the wide range of potential triggers, it's crucial to identify what specifically activates your mast cells. This is where symptom tracking comes into play, not just for food but also for medications and environmental factors. Due to the severity of my symptoms, I experienced bouts of starvation, which inadvertently led me to an elimination-style diet process. This approach is often used by less severe MCAS patients to identify trigger foods. The importance of food journaling and symptom tracking cannot be overstated.

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How to Conduct an Elimination Diet

Start with a Clean Slate: Begin by eating a very basic diet consisting of foods that are least likely to cause any allergic reaction or flare-up. This usually includes lean meats, certain fruits, and vegetables.

 

Introduce Foods Gradually: After a set period, usually a week or two, start reintroducing one food item at a time back into your diet.

 

Monitor Symptoms: Keep a detailed food journal where you note what you eat and any symptoms you experience. This is crucial for identifying any correlations between foods and symptoms.

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Consult Your Healthcare Provider: Always consult with your healthcare provider before making significant changes to your diet, especially when dealing with conditions like MCAS.

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Utilize Advocacy Orgs: Many MCAS advocacy organizations offer comprehensive lists of foods separated by categories like low histamine, anti-inflammatory, and others. However, it's important to note that simply following a low histamine or any other specific diet isn't always the answer. Often, trigger foods won't neatly fit into categories like anti-inflammatory or paleo.

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The Elimination Approach to Medications and Supplements
The elimination diet approach isn't just useful for foods; it's also highly effective when introducing new medications and supplements into your regimen. The same principles of starting with a clean slate, introducing one new element at a time, and closely monitoring symptoms can be applied. This ensures that you can identify any adverse reactions or benefits associated with each medication or supplement. Always consult your healthcare provider when adding new medications or supplements, especially when dealing with complex conditions like MCAS.

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Medication and Treatment Options for MCAS

For many with Mast Cell Activation Syndrome (MCAS), managing symptoms often requires a combination of medications and supplements. This layered approach can help control the excessive release of chemicals like histamine that mast cells produce. Typically, a combination of H1 and H2 antihistamines, alongside mast cell stabilizers, forms the cornerstone of treatment:

 

H1 Antihistamines: These target histamine receptors involved in allergic reactions and can help manage skin-related symptoms like hives or itching.

 

H2 Antihistamines: Often used in conjunction with H1 blockers, H2 antihistamines target receptors in the stomach, helping to reduce gastrointestinal symptoms such as acid reflux.

 

Mast Cell Stabilizers: These prevent mast cells from releasing inflammatory chemicals in the first place. This can provide broader relief for MCAS symptoms, but it may take time to find the right balance.

 

Each person’s treatment plan may differ, and it’s essential to collaborate with a healthcare provider familiar with MCAS. Often, combining medications with supplements such as quercetin (a natural mast cell stabilizer) or Vitamin C can enhance the effectiveness of symptom management. However, these combinations must be done cautiously, especially for women and BIPOC patients who may face delays or misdiagnosis due to systemic healthcare biases.

 

Medications Commonly Used in MCAS Management:

• H1 Antihistamines:

  • Diphenhydramine (Benadryl)

  • Hydroxyzine

  • Loratadine (Claritin)

  • Cetirizine (Zyrtec)

  • Fexofenadine (Allegra)

• H2 Antihistamines:

  • Ranitidine (Zantac)

  • Famotidine (Pepcid)

• Mast Cell Stabilizers:

  • Ketotifen

  • Cromolyn Sodium

  • Quercetin (natural supplement)

  • Vitamin C (natural supplement)

• Other Medications:

  • Aspirin

  • Leukotriene Inhibitors (Montelukast, Zafirlukast)

  • Corticosteroids

  • Monoclonal Antibodies (Omalizumab)

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Alternative Treatments and Therapies
Research is making strides in understanding MCAS, and this could lead to more targeted treatments in the future. While medications are a cornerstone of treatment, other alternative therapies that integrate meditation and healing trauma, can also be beneficial. It's essential to find a treatment that makes you comfortable and aids in your recovery, as there's no one-size-fits-all approach. Here are some common external alternatives: 

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Tao Calligraphy: Tao Calligraphy is a unique form of meditative art that combines the essence of traditional Chinese calligraphy with the philosophy of Tao. Practitioners believe that the act of creating or meditating on Tao Calligraphy can help channel positive energy, thereby aiding in the healing process.

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Reiki: Reiki is a form of energy healing that originated in Japan. It involves the laying on of hands to channel energy and promote healing and relaxation. Like Tao Calligraphy, it also focuses on balancing energy fields in the body.

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Acupuncture: This ancient Chinese therapy involves inserting thin needles into specific points on the body. It's believed to balance the flow of energy or "qi" and is often used to treat pain and other symptoms.

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Yoga: Yoga combines physical postures, breathing exercises, and meditation to improve mental and physical health. The practice is known for its ability to relieve stress, improve flexibility, and even help with symptoms like inflammation.

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Vagal Nerve Stimulation: This involves various techniques aimed at stimulating the vagus nerve, which plays a crucial role in regulating mood and stress levels. Methods can range from deep breathing exercises to using a device that sends electrical impulses to the nerve.

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Gupta Program: The Gupta Program is one of the more popular brain training programs designed to help people with chronic conditions like MCAS, fibromyalgia, and chronic fatigue syndrome. It focuses on retraining the amygdala and insula. These are areas of the brain involved in the stress response to reduce symptoms. The program combines various techniques, including meditation, mindfulness, and cognitive restructuring, to help you manage your symptoms more effectively.

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Supplements
Many patients use supplements in treating their MCAS. It's crucial to remember that everyone's response to supplements can vary, and it's important to consult with a healthcare professional before adding any supplements to your routine. Here are some common supplements that some individuals with MCAS find helpful:

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Quercetin: Quercetin is a flavonoid found in many fruits, vegetables, and grains. It's known for its potential antihistamine and anti-inflammatory properties, which can be beneficial for those with MCAS.

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Vitamin C: Vitamin C is an antioxidant that can help stabilize mast cells and reduce histamine release.

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Vitamin D: Vitamin D plays a role in modulating the immune system, and some individuals with MCAS may have deficiencies. Supplementation should be done under healthcare guidance.

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Omega-3 Fatty Acids: Omega-3 fatty acids, found in fish oil and certain seeds, have anti-inflammatory properties and might help in managing MCAS-related inflammation.

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Probiotics: Probiotics can aid in gut health and potentially help in managing gastrointestinal symptoms often associated with MCAS.

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Magnesium: Magnesium can have a calming effect and might help with muscle spasms and anxiety, which can be issues for those with MCAS.

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Zinc: Zinc is important for immune function and may help support the immune system in those with MCAS.

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B Vitamins: B vitamins, particularly B6, B9 (folate), and B12, are crucial for a healthy nervous system and may help manage fatigue and neurological symptoms.

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Quercetin and Bromelain Combination: Some individuals find relief with this combination, which may help stabilize mast cells and reduce histamine release.

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Luteolin: Luteolin is a flavonoid with potential anti-inflammatory properties and may help in stabilizing mast cells.

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Remember, before starting any supplement regimen, it's important to discuss with your healthcare provider to ensure the supplements won't interfere with any medications you're taking or exacerbate your condition.

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Environmental Changes
Making adjustments to your environment can be a crucial step in managing MCAS symptoms. Whether it's switching to hypoallergenic bedding, using air purifiers, or even relocating to a different climate, these changes can make a significant difference. One often overlooked aspect of managing MCAS is the importance of tracking environmental factors like pollen, mold, humidity, and pollution levels. These elements can significantly impact your symptoms and trigger flare-ups. Utilizing weather apps or specialized tools that provide real-time data on these factors can be a game-changer. By staying informed, you can make necessary adjustments to your daily routine, such as limiting outdoor activities on high-pollen days or using air purifiers more effectively when pollution levels are high. This proactive approach allows you to take control of your environment to some extent, reducing the unpredictability that often comes with MCAS.

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Support Groups and Community Resources
Finding long COVID support groups was a cornerstone in my journey toward understanding and managing my symptoms. With millions of adults estimated to have long COVID in the United States, there's a wealth of shared experience out there that can help you cope. For me, ME/CFS and autoimmune support groups have been invaluable, as their symptoms and conditions often overlap. These groups have often been around longer than long covid groups, and have built out much more comprehensive resources. Quite often offering emotional support and practical advice on navigating the healthcare system. Though MCAS-specific organizations and support groups do exist, they have been notably absent from COVID onset of MCAS. You can also check out another article I've written that reviews your patient rights and the qualities of a good primary care physician.

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Emergency Room Protocol
It's crucial to establish an ER protocol in advance with your primary care provider or allergist/ immunologist. You can also check out an article I've written that gives ER tips. Some advocacy organizations offer sample protocols on their websites. This is essential as ER staff are often uneducated about MCAS, and there's a history of them prompting allergic reactions or denying helpful medications. Leading to undue suffering and even death.

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Culturally Competent Care and Symptom Tracking in BIPOC Communities
Symptom tracking is a crucial tool for managing MCAS, but it presents unique challenges for individuals with darker or brown skin. Many of the visible signs of MCAS, such as flushing, hives, or rashes, may look different or be harder to detect on melanated skin, leading to delayed or missed diagnoses. For example:

 

Flushing and Rashes: What is often described as ‘redness’ or ‘pinkness’ on lighter skin may appear as a darker or purplish hue in individuals with brown or black skin. Healthcare professionals unfamiliar with these variations may not recognize symptoms as part of an allergic or MCAS-related reaction.
Hives or Dermatographia: Raised bumps or welts from hives may be less noticeable but can often be felt as texture changes. Patients with darker skin tones should note changes in how their skin feels, as well as any swelling or heat.

Culturally competent care involves recognizing these differences and advocating for more inclusive diagnostic tools and awareness. Patients may need to be proactive in explaining how their symptoms present differently due to skin tone,

 

Final Thoughts
Living with MCAS is a journey that requires a multi-faceted approach to management. From medications to dietary changes and support groups, each aspect plays a crucial role in improving your quality of life.

Resources
Patient Advocate Foundation: Offers services to help patients navigate healthcare challenges, including insurance issues and medical debt. 

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The Whole30® Program: Offers guidelines for an elimination diet that may help identify food sensitivities, which could be useful for managing MCAS or gastrointestinal symptoms.
 

Disclaimer:

The views and opinions expressed are my own and do not necessarily reflect the official policy or position of any other agency, organization, employer, or company. While I strive to provide accurate and up-to-date information, I make no representations or warranties of any kind, express or implied, about the completeness, accuracy, reliability, suitability, or availability with respect to the information contained herein for any purpose. Any reliance you place on such information is therefore strictly at your own risk.

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