Like most disorders and syndromes that fall into the spoonie category, mast cell activation disorders (MCAD) are incurable. MCADs are often caused by genetic mutations, whether they’re primary like systemic mastocytosis, or secondary (comorbid), which is often the case in mast cell activation syndrome (MCAS). In my last article, Are Most Spoonies Suffering from MCAD, I talked about how research is pointing toward the likelihood that most people with EDS, ME/CFS, Fibromyalgia, IBS, multiple chemical sensitivity, interstitial cyctitis, and POTS are likely suffering from some form of an MCAD. This post is the first of several where I will address how to treat this complex set of disorders, beginning with prevention and avoidance of triggers and allergens.
Since MCAD can affect every system in the body, the symptoms of MCAD are many and varied. To what and how a mastie reacts can vary widely from one mastie to the next. Mast cells exist in every tissue, from bone marrow to organs to the skin. They can affect blood pressure, heart rate, digestion, breathing, and the musculoskeletal system. They can cause a variety of headaches, from sinus to tension to migraines to cluster headaches. They affect energy levels, metabolism and the immune system. They can even affect hearing and vision and cause peripheral neuropathy and other neurological complications. A three prong approach is best for treating the symptoms of mast cell disorders and includes the preventative measures covered in this article, along with drug therapies and dietary changes.
The first and most important line of defense for someone with an MCAD is to determine what triggers their mast cells to become active. When mast cells become active, they release a number of chemicals in the body that can wreak havoc, such as inflammation causing cytokines, allergic reaction causing histamine, among many others that can play havoc with the body. Triggers can be substances which cause an allergic reaction, a substance that acts as a histamine liberator or any stimulus that excite the mast cells into responding inappropriately, such as stress or vibration. It is important to know exactly what you’re allergic to and what substances are triggers so you can avoid them and prevent future episodes and flares.
MCAD and Allergic Reaction
While many of the reactions masties have are due to their mast cells rather than genuine allergies, it’s still very important to understand what a genuine allergy is and what a trigger is. To determine genuine allergic reactions in a person with an MCAD, blood tests must be used, rather than the skin test. Most masties are going to show a reaction to skin tests which could be due to a saturation of histamine or build up of mast cells in the skin that are quick to activate rather than a true allergy. Once your blood is tested and you’ve determined your true allergies, these should always be avoided and it is somewhat rare that these will change.
Substance Related Triggers
When reacting to things in which you are not truly allergic, these are called triggers. These substances and environmental factors must also be avoided, but may eventually be safe again, once the body has been properly treated and is no longer in a state of histamine overload. This can make prevention to exposure tricky, but still possible. As soon as you have a reaction to something and determine its cause, the source needs to be strenuously avoided, as repeated exposure can increase the severity of the reaction and therefore the risk of anaphylaxis. Once treatment has begun, periodic testing can help determine when it’s again safe to risk regular exposure.
For this reason, it is a good idea for masties to keep a journal of everything eaten and experienced. It doesn’t really matter if it’s a food you’ve eaten your whole life or if you eat it every day. With a MCAD, the mast cells can decide something is a threat at any time, causing them to release their noxious cocktail of woes. Since symptoms can sometimes be delayed or somewhat muted until you’ve been exposed to something over several days, having a journal to look back on can be a very useful tool. Sometimes utilizing the low histamine diet is necessary to rule out food triggers, which will be discussed in my final post in this series.
If the substance you’re reacting to is airborne, wearing a respirator mask and/or avoiding environments which contain known allergens are all ways to prevent exposure. If avoidance isn’t possible, a respirator mask is the best answer. Most masties wear either NIOSH N95 or N99 masks which are certified to filter out microscopic particles. While most masks don’t filter out 100% of the irritant, when properly fitted, they significantly reduce exposure. There are a wide variety of disposable and reusable masks on the market today and they are actually used regularly in cities where air quality is a concern, such as China and Japan. I use a vogmask, which is comfortable, reusable and washable.
Using a mask may seem extreme and uncomfortable, but for many masties, it’s the only way we can leave our homes. Perfumes, colognes, many body products, cleaning products and air fresheners are triggers for me, so I generally can’t be around other people, visit anyone’s home or shop in stores if I don’t wear a mask. I’ve become highly reactive to pollen since this spring, too. Suddenly nowhere is safe. If the pollen counts are higher than a two, I have to wear a mask when I’m outdoors, even if I’m only going to be out for a minute or two. Otherwise, it takes me days to recover from a pollen exposure. For me, a mask is the difference between being a prisoner in my home and being able to buy groceries.
Of course the great outdoors isn’t the only place where pollen lives. Pollen is comprised of tiny particles which are designed to stick to things for maximum spread. It loves to hop a ride on our shoes, clothes and skin. Here are a few tips for keeping pollen outside of your home:
- Keep your windows closed, especially on breezy days.
- Leave your shoes at the door to avoid tracking pollen into your home
- Change your clothes when arriving home somewhere other than primary living spaces
- Always wash anything that’s been worn outdoors before wearing it again
- Shower when returning home or before bedtime after going out
- Install a HEPA allergen filter in your HVAC system with a rating of 10 or higher and change it regularly
If you have dust mite allergy like me, it’s not exactly practical to go around wearing a respirator mask 24/7, so a different approach is usually warranted. The solution? Develop a love for cleaning. Masties and dust mite allergy sufferers cannot afford to be slackers:
- Use allergen covers on your mattress and pillows. Remove and wash at least monthly
- Wash your bedding weekly in hot water to ensure dust mites do not survive
- Dust weekly. Be sure to you get the top of your headboard, fans and those other hard to reach spots regularly to keep dust from building up
- If you have carpets, vacuum weekly with a HEPA filtered vacuum
- Vacuum cloth furniture regularly
- Sweep and mop hard floors (which are better for dust mite allergy than carpets)
If you’re allergic to a lot of cleaning products, try switching to natural equivalents. Two of my favorite cleaners are vinegar and baking soda, but I also use a few natural, organic commercial cleaners, as well. When you find something that works for you, stick to it. Bouncing around from one brand to the next could increase your likelihood of reaction. At least it does mine. If you absolutely must use something that you might react to, be sure to use gloves and a mask, avoiding contact with the skin and inhalation of any fumes.
These are just a few examples of ways to protect against common allergens and triggers. No matter what allergen you’re trying to avoid, prevention is a great way to start. It’s easy to find great common sense tips online for limiting your exposure to almost any allergen or trigger. One I purposely didn’t cover is mycotoxin allergy. It’s complex and difficult, but there is a lot of great info out there to be had on how to eliminate mold from your home.
Non-Substance Related Triggers
There are a number of triggers which aren’t allergens or substances, such as emotional and physical stressors, fatigue, infections and vibration, just to name a few. Not all of these are a trigger for every person with an MCAD, however many are quite common and masties should always pay attention to how they feel after immediate exposure to anything that’s a known trigger. Knowing and making choices accordingly can help save you from a flare, or from being stuck in one long term.
While it’s not always practical or even possible to avoid something like emotional stress, if you’re a mastie, you have a valid excuse to say “I can’t deal with this,” when the pressure is getting to be too much. Stress may not be good for anyone’s health, but for a mastie, it can lead to a serious long term flare. Stress, whether it be mechanical, emotional or environmental, is almost always a trigger for every person with a MCAD, so it’s important to manage stress through diet, exercise and other reduction strategies. If you have a mental health issue, it’s especially important that this be addressed and treated, as MCAS can cause anxiety and depression. Speaking as someone who has complex PTSD and MCAS, the interplay between MCAS and mental illness is its own special circle of hell.
If you have issues with vibration, which tends to excite mast cells and can cause activation, most likely you will decline with long car rides on the highway, boat trips, plane rides, or concerts. You may find things like motorcycles or ATV’s absolutely unbearable. The use of a TENS unit or massager, while often relaxing for muscles, causes itching, redness and swelling, or sometimes even nausea, fatigue and blurred vision. Some vibration may be tolerable, while a two hour concert or 10 minute motorcycle ride could put you to bed for several days. Again, it all depends on the sensitivity of the individual.
Finally, it’s important to understand that things like exercise intolerance are very real and at times it may be best to avoid it altogether: However, gentle exercise and physical therapy is usually fine. In the case of exercise, starting out at the right level and slowly working your way up to slightly more challenging exercises seems to work best; usually taking baby steps. If you have dysautonomia, which usually goes hand in hand with MCAD, you also want to monitor your heart rate closely and avoid exercising in an upright position.
With non-substance related triggers, it’s often a matter of finding your threshold and working within those parameters when it comes to MCAS, as many are things which cannot be entirely avoided. It’s also a matter of trusting and listening to your body. Sometimes it speaks loudly and others it likes to whisper. Vigilance is invaluable. If you react poorly to something, you’ll at least experience some level of fatigue or mild symptoms. Not every reaction is going to be as obvious as welts or anaphylaxis. Things are rarely cut and dried with these disorders, so it’s up to the patient to ensure their world and how they interact with it is best suited to their specific quirks.