Coping

While there is no cure for MCAS and mast cell activation issues and disorders, there are things you can do to support your highest levels of health and well-being—–to cope.

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Get Educated

Life with mast cell activation related issues and disorders can be an extremely challenging world to navigate. It can often feel that you need to be nonstop frisking yourself and your environment for potential triggers, 24/7; feeling you can never quite stay on top of things; feeling uncertain, threatened by unknowns; feeling afraid to venture out the door.

The number one most important thing for each person who has or suspects they might have a mast cell activation related issue or disorder is to become educated about mast cells, what’s happening in their body, and what they need to do to support their health. You need to know.

There is a growing amount of information and research about mast cells, mast cell activation, and mast cell activation related issues and disorders. There is also a great deal of misinformation. It can be very difficult to tease apart and separate information that is to be trusted from information that is not reliable, not correct, and not to be trusted. Adding to the confusion are the many healthcare professionals who present themselves as being in some way mast cell specialists but who, in reality, are not mast cell specialists and who may have, at best, limited information and/or limited training.

CELACare offers the first ever training in mast cells and mast cell activation related issues and disorders, what they are, how to recognize and diagnose them, and how to treat them. The training is for non-healthcare professionals and healthcare professionals:

Learn More & Enroll Today!

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Safe Haven

For the person who has or suspects they might have a mast cell activation issue or disorder, each day can be a bombardment of the toxic: car exhaust fumes, chemicals, construction, scents, road work, plastics. It’s imperative to create a space to exist within your home that’s as toxic-free as you can make it—a safe haven.

Creating that safe space often means removing from your environment the things to which you react. For instance, plastics, cushions, pillows, fabrics, clothing, dishes, blankets, bedding, carpets, and more. Many people do a combination of throwing things away, giving things away, putting things in storage. However you do it, the important thing is that you do it. Spending time in a space from which toxins and things that bring on reactions have been removed means you have a space where your system can calm down, can ease. A space where your reactions can become less intense. Think of it as medicinal. Your body needs to have a space somewhere that isn’t over-run with chemicals, and substances, and things that will trigger reactions.

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Know Thyself

The reactions that people who have mast cell activation related issues and disorders experience when they are exposed to their triggers are very individualized. It keeps confounding healthcare providers who look for one size fits all biomarkers or a series of assessments where every time for every person the same exposure to “x” substance or chemical brings on the same “y” reaction. Mast cell activation issues and disorders don’t work that way.

Person A may experience nausea, brainfog, and aching joints when exposed to car exhaust fumes. Person B may experience vertigo, numbness and tingling to their extremities, plus tinnitus when exposed to car exhaust fumes. Person C may not experience any reactions at all when exposed to car exhaust fumes. Person D may not experience any reactions in the moment when exposed to car exhaust fumes but two and three days later can experience extreme exhaustion and fatigue, muscle weakness, blurred or double vision, and migraines or migraine-like headaches from their having been exposed to car exhaust fumes days prior: delayed reactions. What is consistent and repeatable is that each person will have their own specific array of reactions when exposed to their specific triggers.

People with mast cell activation related issues and disorders need to learn what their specific triggers are and, to the best that they’re able, what their specific reactions are to those triggers. It can seem an impossible task when the universe in total feels like it’s a trigger, but with the right medical interventions and supports, coupled with the necessary life-style changes, many people find their symptoms become more manageable and they are better able to match reactions with triggers and keep themselves safe.

Start making lists. Write things down. Keep records of your reactions and possible exposures that may have brought them on.

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Life-style Changes

“Life-style” covers an enormous area of changes that need to be put into place in order to minimize reactions. Life-style changes must begin with and center on each person knowing and identifying the things that are triggers for them and bring on reactions as well as the things they can tolerate.

Avoidance is the number one, essential, key ingredient in supporting optimal health in the world of mast cell activation issues and disorders. You must do everything you can to avoid exposures to the chemicals, substances, and environments to which you react.

Housing can be highly problematic for multiple reasons and having a mast cell activation issue or disorder can sometimes mean having to move. It can be the general neighborhood that is too toxic, for example, being in the city where there’s a lot of traffic and construction. It can be an apartment or an apartment building that you live in is causing reactions from multiple areas including: materials the building or apartment itself is made out of; cleaning products used in hallways and common areas; renovation work to the interior or exterior of the building; mold; products, cleaners, and life-style choices of the neighbors.

Roommates/Housemates and those sharing the living space can prove to be highly problematic through their use of and preferences for personal care products, cleaners, and their life-style choices. We all tend to have favorite or preferred bath and shower products, perfumes and colognes, air and room fresheners, soaps, cleaners, laundry detergents. Not everyone is going to be willing to change or give up many or most, if not all, of their favorite products because they make someone else sick.

Friendships and relationships can be tried to the breaking point. The way that things need to be for the person with a mast cell activation related issue or disorder, in many areas, are pretty absolute. You cannot have or be exposed to chemicals, substances, and items that cause you to react–on other people, in the environment, and on yourself.

How this translates is that people can’t enter your space or be in your space the way they may have in the past, before things got so bad. If they do want to or need to be in the same space or share the same space with you, they’re going to have to make changes that must be in place in a particular way that only you can determine.

It’s not a pick and choose situation where someone can comply with items 1-3 on the list of how things need to be to keep you healthy (e.g., using one particular laundry soap, using one particular soap to shower and bathe, using one particular brand of antiperspirant or deodorant because they are the only ones you can tolerate and that don’t bring on reactions) but not comply with items 4, 5, and 6 (e.g., no perfume or scented products, no cosmetics, use only this one brand of shampoo.)

Continue making lists. Write things down. Keep records of your reactions and possible triggers that may have brought them on. In this way, you will get to know the products you can use and tolerate, the products and items you can’t tolerate. Share the information with everyone you know with whom you want to spend time or who want to spend time with you most especially if they might wish to enter your living space.

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Managing Stress

Every mast cell throughout the body has receptors for cortisol, the stress hormone. When cortisol hits our mast cells, the mast cells become activated and degranulate bringing on and/or intensifying the reactions that we experience. Finding strategies and interventions that help support mast cell stabilization can reduce mast cell reactions. Two key strategies are exercise and diet.

The importance of diet and exercise (along with sleep) cannot be over-emphasized in managing mast cell activation symptoms and reactions.

Making lifestyle changes in these areas specifically targeting mast cell stabilization and mast cell strengthening choices can aid and support bringing down the intensity of reactions while helping to retrain mast cells.

Explore our Ambient Soundscapes & Library and find tools for your personal toolbox for managing stress

Self-care options: checkout our support groups that include Community Peer Support, Clinical Supports, mast cell activation related issues and disorder-focused Q&A sessions, and our Drop-in Writing Club: Poetry, Music, & You

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The Challenge of Food

Food–what to eat and where to shop–can be highly problematic for many people with a mast cell activation related issue or disorder. It isn’t always the food item itself that causes reactions, although it can be. Frequently, it’s the packaging, the plastics, the way items are stored or displayed that are a large part of the problem and the challenge of food.

Plastics don’t ever stop off-gassing chemicals, most of which are toxic, into the air. If food and food items are contained in plastics, displayed in plastics, wrapped in plastics, the chemicals that the plastics are off-gassing leach into and get absorbed by the food.

Histamine is another aspect of food that causes reactions and can intensify reactions. When mast cells are activated, they degranulate–crumble–and pump hundreds of chemicals (called mediators) into the body. Histamine is one of those mediators and is responsible for many different reactions such as difficulty breathing, swelling, rashes. Histamine also regulates our sleep-wake cycles and cognitive function and plays a role in our experiences of pain, our emotions, memory, and learning.

Keep making those lists. Write things down. Track your triggers and reactions. When it comes to food, know that you’ll be able to buy and eat certain foods from certain stores and that you’re the only one who can figure out what you can tolerate and from where. This includes things like paper towels, napkins, toilet paper, tissues. It can mean that you’re unable to eat certain foods without bringing on reactions. (Avoidance includes food as well as places and materials.) It can mean you can tolerate only certain brands. There are people who can only eat fruit from one store and their potatoes have to be bought only from another store.

Sometimes food tolerances will change with the seasons. There are people who can tolerate a wider variety of food choices in the summer or warmer months than in the winter or colder months. Temperatures, especially extremes whether hot or cold, can be triggers themselves as can emotions whether positive or negative.

Make low histamine food choices. Include as best as you’re able food choices that are mast cell stabilizers.

Food as Medicine

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Who am I now?

It can be hard for someone who doesn’t have a mast cell activation issue or disorder to understand the work involved in getting through the day; every day. It can be hard for each person to go there within themselves let alone explain to someone else what it feels like to have the whole universe up-ended and to suddenly inhabit a reality where everything you knew, everything you dreamed, has radically shifted if not become, seemingly in a flash, utterly unattainable.

You are still you. Certain trajectories and particular futures may have changed, even dramatically, but that doesn’t mean you are without dreams or without a future.

Going forward, center stage must be your health and doing things the way they need to be to support your health.

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Avenues of Connection

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Contact us – you’re not alone or without supports

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CELACare Eco-Health, Inc.