What calms a mast cell disease flare?

Calming a mast cell disease flare typically involves using medications. These may include: epinephrine, antihistamines (H1 or H2 blockers), mast cell stabilizers and oral corticosteroids (OCS).

Living with Mast Cell Disease

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Living with a mast cell disease can be a challenge – even with treatment. Is there more you can you do to feel better? The quick answer is yes. You live with your mast cell disease every day. You know your body better than anyone.

In some cases, people are able to identify what triggers mast cell disease symptoms. They learn what makes them feel worse or better. Many others are not able to find triggers but can still take medications or develop routines that can help reduce symptoms and flare-ups.

With the right information and approach to treatment, you can manage your mast cell disease effectively.

Understanding mast cells

Mast cells are an important part of your immune system. They live in tissues of your skin, airways, stomach, and bone marrow. Mast cells respond to and fight invaders such as germs, viruses and allergens. They do so by releasing chemicals called mediators, including histamine — this is called mast cell action or activation. When mast cells release histamine, it can cause common respiratory, skin and digestive symptoms in people with allergic conditions.

Mast cell diseases are rare. They include a group of conditions where your body’s mast cells are working overtime. This can lead to a host of symptoms such as skin rashes, digestive problems, trouble breathing, blood pressure or heart rate changes, or bone pain. It can also lead to anaphylaxis, a severe and life-threatening allergic reaction.

The two most common mast cell diseases are mastocytosis and mast cell activation syndrome (MCAS). Hereditary alpha tryptasemia (HαT) is a genetic trait that may be present in as many as 1 in 20 people and is associated with mast cell disorders.

What are common symptoms of mast cell diseases?

Mast cell disease symptoms may affect different body systems. You may experience symptoms that involve:

Skin rashes or lesions, flushing
Stomach pain, nausea, vomiting, diarrhea
Heartburn (acid reflux) or GERD
Difficulty breathing
Low blood pressure, heart racing, fainting
Weak bones, bone pain
Feeling confused, trouble thinking
Anaphylaxis (a severe or life-threatening allergic reaction)

Many people with mast cell disease symptoms have trouble getting an accurate diagnosis. They may have a misdiagnosis or delayed diagnosis. Research reveals it takes an average of 6.5 years to get a diagnosis of a mast cell disease.t many doctors seeking treatment. It can be difficult for some to find a doctor who connects the dots to a mast cell disease.

What triggers mast cell disease symptoms?

It’s important that people with mast cell disease identify and avoid their triggers. They are different for everyone. And some people may have symptoms without triggers.

Some common triggers include:

Certain foods or medicines
Infections
Heat, cold, or temperature change
Insect stings
Friction or vibration of the skin, such as after using a lawnmower
Stress
Exercise
Contrast dyes that you might receive during a medical exam

If you don’t know your triggers, keep a diary of when, how and where symptoms occurred. This may help you figure out and avoid triggers.

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Do foods trigger mast cell disease symptoms?

In general there are no specific foods that trigger mast cell disease symptoms. According to the Mast Cell Disease Society, some people do find they are more reactive to certain foods and drinks. Alcohol, in particular, is considered a trigger for symptoms. Other triggers that patients have reported include shellfish, tomatoes and tomato-based products, food preservatives, artificial dyes and flavorings, and the flavor enhancer monosodium glutamate (MSG).

What about eating a low-histamine diet? Do low-histamine foods keep from triggering mast cell disease symptoms? Current research does not support a low-histamine diet for mast cell disease. However, you know your body best. If you think certain foods are triggering mast cell-related symptoms, then keep a journal about your diet. Write down your symptoms and share your notes with your doctor.

You may want to also consult a registered dietician or nutritionist. A registered dietician or nutritionist can help you figure out foods that may trigger some symptoms, and more importantly, ensure you’re getting the right nutrition if you must avoid certain foods.

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Coping with mast cell disorders

People with mast cell disease – whether diagnosed or undiagnosed – may live with symptoms that can be scary. They may constantly try new medicines to help treat symptoms. They may have high healthcare costs as a result.

For many, managing a mast cell disease can be exhausting. It can cause anxiety and depression. Stress can lead to worsened symptoms. Studies have found many people with mast cell diseases tend to avoid social situations.

With certain precautions, people with mast cell disease can live a full and active life. Here are some tips and strategies to help you better manage a mast cell disease.

Follow your doctor’s advice

Work closely with your doctor to find the right treatment for you. Your doctor might recommend medications to help you better control your symptoms. Make sure to start an open dialogue with your doctor. Communicate how your medications are working and report any side effects.

Know your triggers

Figure out what causes your symptoms to worsen. If it is not obvious, keep a diary to track when symptoms arise or worsen. Take note of what you eat, what you experience, and how you feel. Your doctor can also help you track symptoms and identify any trends.

Remember, some patients develop mast cell-related symptoms spontaneously and without any obvious triggers. The same treatments work for people with mast cell disorders regardless of whether they can identify a trigger for their symptoms.

Avoid allergens

If you are diagnosed with allergies to things like pollen, insect stings, food or pet dander, try to avoid them as much as possible. These allergens can trigger mast cells. This might mean you have to:

stay indoors on high pollen days or when insects are more common;
check food product labels to ensure what you eat is safe;
make sure your home’s indoor air is as clear of allergens as possible.

You may want to consider allergy immunotherapy to help your body better tolerate exposure to allergens.

Take medications as prescribed

If your doctor prescribes medication to manage your mast cell disease, take it as directed. Check the package insert for more information about the drug. Confirm that you are taking it correctly and at the right dose. Review potential side effects and report any that occur to your physician. This can help ensure the medicine works as it is supposed to do and prevents or treats symptoms.

Carry emergency medications with you

If you are at risk for severe systemic reactions, carry epinephrine with you at all times. Epinephrine is the first line of treatment for these reactions, called anaphylaxis. Take epinephrine at the first sign of symptoms. Do not delay as this could increase your risk of hospitalization or a fatal outcome. Devices include an epinephrine nasal spray and auto-injector. Two doses are needed in case a second reaction occurs.

If your symptoms improve after one dose of epinephrine and you’re feeling better, you do not need to go the hospital or emergency department. However, you should administer a second dose and seek emergency medical help if…

symptoms return or worsen after the first dose of epinephrine;
you have severe anaphylaxis;
symptoms do not go away promptly or completely after the first dose of epinephrine.

If you do not have epinephrine readily available, call 911 for emergency medical treatment. Or go to the hospital, emergency department or urgent care clinic right away.

Carrying epinephrine with you at all times may have the added benefit of helping you feel less anxious should a severe reaction occur. Be sure to store your devices someplace easily accessible. Get a storage pack that is easy to carry.

You may also want to have easy access to antihistamines. These are commonly used to treat mast cell diseases. They can help prevent any symptoms you have from worsening.

Wear a Medical ID bracelet

If you are unable to take an emergency medication yourself, a Medical ID bracelet or jewelry can help. It can let others know what you may be experiencing and what to do in case of an emergency. For example, the bracelet might say: “I am at risk for anaphylaxis. Please call 911 and/or give me epinephrine if I cannot respond.”

Keep aware of temperatures

Some people with mast cell disease are sensitive to heat. Others may have symptoms when it’s cold. Be mindful of sudden changes in temperature or extreme temperatures. When it’s hot, wear hats and loose-fitting clothing. When it’s cold, dress in layers to help you maintain your body temperature.

The same temperature control applies to bathing. If you are sensitive to cold, don’t jump into a cold bath or pool as this could trigger symptoms.

Stay active

Regular exercise can help you feel better. It can also help reduce your stress levels. Make sure to choose activities you enjoy. Consider walking, swimming, or biking – but listen to your body and stop if you feel unwell. Try low-impact exercise if vigorous activity causes symptoms. Lift weights regularly to promote bone health.

Make sure you manage your body temperature while exercising. Wear layers if it’s cold outside and loose clothing when it’s hot. Consider exercise in a climate-controlled gym or inside your home.

Manage stress

The impact of stress on the body can affect your immune system and worsen mast cell disease. It can affect your immune system and make you more prone to more infection. It’s important to find ways to relax and keep stress in check. Consider activities like reading, drawing, or spending time with friends and family. Try mindfulness activities like yoga or meditation.

Eat a healthy diet

Eating a balanced diet is good practice for overall health. But it might be especially helpful for people with mast cell disease who need strong immune systems. Make sure to eat plenty of fruits, vegetables, and whole grains. Avoid foods that you know trigger your symptoms.

What about alcohol? It may trigger mast cell disease symptoms in some people. If it does, avoid alcohol and consider drinking non-alcoholic beverages.

Learn about your condition

The more you know about mast cell disease, the better you can manage it. Do not hesitate to ask your doctor questions. Look for credible, medically approved sources of information, especially online. When you understand your condition, you can make informed decisions about your health.

Stay connected

Reach out to support groups or online communities so you can connect with others who have mast cell disease. Sharing experiences and tips can provide practical advice and comfort.

Keep a positive outlook

For some people with mast cell disease, it can be hard to stay positive when managing bothersome symptoms. Others may have anxiety about having a life-threatening reaction.

Maintaining a positive outlook, even in the face of health challenges, can help you cope better. It can enhance your resilience and improve your overall well-being. Celebrate your successes, no matter how small, and focus on the things that make you happy. Surround yourself with support, stay informed of your health, and take small steps to nurture both your body and mind.

If you are unable to break the cycle of negative thoughts, consider seeing a mental health specialist or ask your doctor for a referral.

The Mast Cell Disease Society has a wealth of patient education resources. Their goal is to provide education. The organization can also help connect people living with mast cell diseases.

Questions & answers on living with mast cell diseases

Here’s a Q&A with some common questions from people living with mast cell disease. If there’s a topic you would like to see addressed here, please email our editor.

Living with MCAS or mastocytosis can be physically and emotionally demanding. These diseases are often unpredictable.

Triggers can vary from person to person, and some people may not have identifiable triggers. You may have symptoms on different parts of the body. They may flare up at any time, without warning. You may have frequent allergic reactions, including some that are potentially life-threatening.

For some people, living with a mast cell disease may involve dietary restrictions. This can make socializing around food difficult and limit dietary options. The need to avoid triggers like can make going out in public or crowded spaces difficult. It can take an emotional toll, leading to mental health issues such as anxiety or depression.

With proper treatment, lifestyle adjustments and awareness, people find ways to live well with mast cell disease. It can require vigilance, though. Advocate for yourself by educating your family, friends, coworkers and others about the seriousness of mast cell disease.

Over time, you will learn to adapt your lifestyle, environment, and mindset to better manage symptoms and improve quality of life.

Not at this time. Mast cell diseases are chronic conditions. For now, they require long-term management to control symptoms and improve quality of life. But you can manage it.

Medications are available to help prevent or ease symptoms. These include antihistamines, mast cell stabilizers, biologics and — for people with mastocytosis — tyrosine kinase inhibitors. (People at risk for anaphylaxis should have access to two doses of epinephrine in case of a severe allergic reaction.) Avoiding known triggers and making lifestyle adjustments are also part of a mast cell disease management plan.

Yes, most people with mast cell disease have long and healthy lives. The key is learning to manage your symptoms. Medications can help by stopping or reducing symptoms.

Antihistamines, for example, can be used to stop mild to moderate allergic reactions. Some people take special medications that can block or lower the chemicals in our bodies that cause mast cell problems.

In rare cases, people with blood cancers can develop mastocytosis at the same time. Even more rarely, people with an extremely uncommon advanced form of systemic mastocytosis can develop a blood cancer. Like other cancers, these are life-threatening conditions that require specific treatments from cancer doctors like chemotherapy or bone marrow tranplant. These conditions can often be fatal.

Mast cell diseases are chronic conditions. They do not typically go away. These diseases involve the body’s mast cells which release excessive chemicals like histamine, either spontaneously or in response to various triggers. Since these conditions are chronic, people usually need lifelong management of symptoms.

With proper mastocytosis or MCAS treatment, most patients with mast cell diseases can live full lives.

When people with mast cell disease experience symptoms, it can feel like a mix of allergic reactions in multiple organ systems.

Some may have a skin rash or flushing. Others may have stomach issues like nausea or vomiting. Other common symptoms may include breathing issues, a sense of impending doom, and fainting. Sometimes a mast cell flare can lead to anaphylaxis, a severe allergic reaction.

Managing a mast cell flare often requires quick action with emergency medication. This may include antihistamines or epinephrine.

Calming a mast cell disease flare typically involves using medications. These may include:

Epinephrine is the first-line treatment for a severe mast cell-mediated systemic reaction, or anaphylaxis. Anyone with a history of anaphylaxis should always carry two doses of epinephrine. Devices include a nasal spray and an auto-injector. Epinephrine can stop severe symptoms of anaphylaxis.
Antihistamines (H1 or H2 blockers) can help reduce histamine-related symptoms such as skin rashes, flushing, breathing problems or stomach discomfort.
Mast cell stabilizers can prevent further mast cell activation and worsening of symptoms.
Oral corticosteroids (OCS) can help prevent or reduce inflammation when a flare-up is persistent. OCS are usually taken as a short course or burst. If used regularly or repeatedly over the long-term, they can have lasting negative effects on health.

Work with your doctors to develop a treatment plan that addresses the onset of symptoms.

No, there are no known foods that can consistently calm mast cells when they are activated. Some people with mast cell disease may find themselves avoiding certain foods out of fear of a reaction. But oftentimes, there is no food triggering symptoms.

In general, eating a healthy, balanced diet is best. This means including fresh fruits and vegetables, meat or poultry and fish in your diet. Seek a registered dietician who can work with you to identify healthy foods.

In many people with mast cell disease, there is no external cause for episodes. In these cases, the best way to limit the severity of episodes involves biofeedback or medication. Biofeedback is a technique that helps patients use their minds to control normally automatic body functions (like breathing).

Less commonly, some people are able to identify specific triggers for their symptoms. In these people, avoiding specific triggers may limit the frequency or severity of reactions. But even for these people, taking regular and as-needed medication is the best way to prevent and treat reactions.

Check with your doctor about any non-prescription supplements you may be taking. You should track whether they are helping with your mast cell-related symptoms, especially if there is limited or no scientific data on their effectiveness.

Reviewed by:
Jonathan J. Lyons, MD, is a board-certified allergist and immunologist and Professor of Medicine at the University of California, San Diego. He is the former chief of the Translational Allergic Immunopathology Unit in the Laboratory of Allergic Diseases at the National Institutes of Allergy and Infectious Diseases (NIAID). Dr. Lyons has received multiple awards for his groundbreaking work in characterizing genetic causes for increased mast cell hyperactivity and anaphylaxis, and first described hereditary alpha-tryptasemia.

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