Tips for Avoiding Environmental Triggers of Systemic Mastocytosis

When you’re living with systemic mastocytosis (SM), everyday life can feel like detective work. Symptoms vary widely from person to person, so figuring out what’s behind your flares isn’t always straightforward.

But some of your triggers could be hiding in plain sight — and once you can identify them, you can take steps to avoid them or to limit your exposure. Hematologist-oncologist Aaron Gerds, MD, explains.

What causes systemic mastocytosis flares?

Systemic mastocytosis is a rare blood disorder that happens when cells in your body, called mast cells, grow abnormally and become too reactive. This causes symptoms that resemble allergic reactions, which can range from mild to severe.

“These mast cells start to degranulate, which means they begin releasing chemicals like histamine,” Dr. Gerds explains. “Once they activate, they trigger each other, and things escalate from there.”

Mast cell flares can happen for obvious reasons or invisible ones.

“People often know that things like bee stings can cause severe reactions, or that certain foods, lotions or environmental exposures trigger their symptoms,” he reports. “But they can also happen for seemingly no reason at all.”

That’s one of the reasons why identifying environmental exposures — including things found in your home — may matter more than you realize.

Possible household triggers of systemic mastocytosis

Not every person with systemic mastocytosis reacts to the same things. What triggers one person may not bother you at all, and vice versa.

Still, Dr. Gerds says that certain patterns come up repeatedly. He outlines a few common triggers often found at home.

Fragrances and scented products

Scented products often irritate sensitive mast cells. Even products marketed as “natural” — like those made with botanicals and essential oils — can still contain fragrances or plant compounds that trigger SM symptoms.

“One of the most common triggers we see is certain types of lotions and soaps,” Dr. Gerds shares. Other potential culprits may include:

• Perfumes and colognes
• Scented candles
• Air fresheners
• Essential oils
• Laundry detergent

Harsh chemicals

For some people living with systemic mastocytosis, certain chemicals (and the products that contain them) can trigger mast cells and lead to SM flares.

“These chemicals may be found in everything from household cleaners and home building products to hand soaps and cosmetics,” Dr. Gerds cautions.

Unfortunately, there’s no definitive list of chemicals or chemical compounds that may affect you. But the possibilities include:

• Ammonium chloride, a fertilizer and a flavoring agent
• Bleach, a household disinfectant and color remover
• Formaldehyde, an industrial byproduct
• Parabens, a category of synthetic preservatives
• Phthalates, aka “everywhere chemicals”
• Propylene glycol, a solvent, humectant and preservative
• Sodium lauryl sulfate (SLS), a surfactant and foaming agent
• Triclosan, an antimicrobial and antifungal agent

Volatile organic compounds (VOCs)

Many common home products contain volatile organic compounds (VOCs), which emit gases that affect air quality. They can irritate your airways and cause other health problems, including allergic skin reactions.

“VOCs may make systemic mastocytosis symptoms worse,” Dr. Gerds confirms. At home, they may be found in products like:

• Paint and paint stripper
• Cleaning supplies
• Aerosol sprays
• Craft materials, like glues and permanent markers
• Dish soaps
• Dry-cleaned clothing
• Laundry detergents and fabric softeners
• Pesticides

Foods and beverages

As with other systemic mastocytosis triggers, everyone’s food triggers are different, too. But one study found that the most common food-related triggers are: 

• Alcohol
• Nuts
• Spicy food
• Fermented food
• Seafood

“If your symptoms are mostly gastrointestinal, you likely already have a sense of some of those triggers,” Dr. Gerds says. “People with systemic mastocytosis often recognize that eating specific foods leads to digestive symptoms.”

Tips for auditing your home for SM triggers

You may not be able to completely avoid your systemic mastocytosis triggers, but there are steps you can take to limit your exposure and make your home a safer haven.

1. Improve your indoor air quality

The air in your home can be contaminated by all kinds of things — from outdoor allergens like pollen and ragweed to indoor sources like cleaning chemicals and mold. Learn about what affects indoor air quality, and take steps to improve yours.

For starters, you might:

• Shut your windows. “If you know that pollen or other environmental exposure sets off your symptoms, try to avoid it as much as you can by keeping the windows closed,” Dr. Gerds advises.
• Use an air filter. You can even make your own for cheap. “Use bungee cords to strap an air conditioner filter to a box fan,” he suggests. “When you put it in a window, it will draw the air through the filter and out the window.”
• Take care of mold. Mold spores and poor ventilation can make symptoms worse. Watch for musty smells, water damage, condensation buildup and, of course, visible mold growth — and call a professional to remediate it.

2. Ditch fragrances and scented products

If you’re prone to systemic mastocytosis-related skin symptoms, you may have the best luck with products that are:

• Hypoallergenic
• Fragrance-free
• Paraben-free and made without other potentially irritating ingredients, like sodium lauryl sulfate

If you’re struggling to find skin care or hygiene products that don’t trigger your SM symptoms, talk to your healthcare provider. A dermatologist can help you identify gentle, non-irritating products that can work for you.

3. Swap cleaning products (or make your own)

Skip store-bought cleaning products that contain ingredients like:

• Harsh chemicals
• Bleach
• Ammonia
• Synthetic fragrances

Instead, look for cleaning products that are labeled as being hypoallergenic and non-toxic — or learn how to make your own using safe products, like diluted vinegar.

4. Practice caution with VOCs

“VOCs are almost impossible to avoid,” Dr. Gerds acknowledges. But there are some steps you can take to try to limit your exposure:

• Wear gloves and a face mask. Protect your skin and airways as much as possible when you’re using products known to contain VOCs. 
• Get the air moving. Open the windows and turn on fans to increase ventilation and circulation while using VOC products indoors.
• Make swaps when possible. The EPA Safer Choice website can help you find zero-VOC or low-VOC paints, cleaning products, detergents and more.
• Switch dry cleaners. Choose a service that uses liquid CO2 technology, which doesn’t contribute to VOC emissions.

5. Track, eliminate and reintroduce

It can be incredibly difficult to identify your systemic mastocytosis triggers. But Dr. Gerds says it can be helpful to go through each of your regular products — like soaps, lotions and detergents — in an organized and systematic way, sort of like an “elimination diet.”

“Cut everything back to a minimal state, and then slowly reintroduce things, one at a time,” Dr. Gerds says. “If you experience flares, then you withdraw that thing again and see if it gets better.”

Track the results using a journal or an app, if it helps. You may spot patterns that clue you in to triggers you hadn’t realized before.

“It all sounds very trial-and-errorish,” he notes. “But that’s one of the primary ways that people find out what’s safe for them and what makes their symptoms worse.”

The biggest tip? Get treatment

Avoiding your systemic mastocytosis triggers is important — but sometimes it’s practically impossible, given how many there can be. Especially when you consider other common triggers, such as:

• Insect stings
• Heat or cold
• Medications, like NSAIDs
• Stress

“They can be almost anything, anywhere,” Dr. Gerds says. “So, instead of just avoiding things that cause flares, it’s really important that we try to actively prevent those flares through treatment.”

If your symptoms are changing, becoming more frequent or harder to manage, talk to your healthcare provider about treatment options.

Many people with systemic mastocytosis benefit from antihistamines and other medications that help calm mast cell activity. And some newer therapies specifically target abnormal mast cells, which can dramatically improve symptoms and lower the risk of flares.

“In some people, we’ve seen these therapies lead to very deep remission,” he encourages. “With the right treatment, life without symptoms is possible.”