So, you’ve finally been clinically diagnosed with Mast Cell Activation Syndrome. Congratulations!!! For many, this only comes after decades of frustration with unexplained symptoms that don’t add up. Take the time to give yourself a giant pat on the back. Information truly is power, and from here on out you’re going to be gathering a whole lot of information. And as a whole, things should get better from here, but keep in mind that some patience is required in the process, especially in the first several months after diagnosis.
Gear up! Strap on your best armor! Let’s get ready to slay some mast cell chemical mediators!
Below is a checklist to help patients through the first few months of navigating this new condition.
Have a prostaglandin party, head to your favorite restaurant, devote an evening to some intense journaling, get a hypoallergenic goldfish… Do something symbolic to kick off this new chapter of your life! Take a moment to pause and embrace yourself with love and acceptance. Validate what you’ve gone through, all of the struggles, all of the pain. Let yourself feel hopeful.
2. Let Go.
Let go of past “wrongs” committed by the medical community, friends, family, loved ones who may have doubted you or thought it was all in your head. This is a really important and powerful tool to moving forward. We mustn’t harbor negative energy toward the (likely dozens upon dozens of) doctors who mis-diagnosed us or told us to take anti-depressants. In all honesty, most of those people were making the best sense of the situation with the tools that they were trained with. While the system as a whole clearly needs to change, holding onto anger will not help you achieve improved health. Trust me, the process of acknowledging those wrongs and then letting them go is incredibly liberating. Sometimes it’s helpful to write letters to those who have hurt you in the past (even if you don’t send them). For some, walking away from the relationship may facilitate the greatest healing if they feel that person’s mindset is a negative influence. Whatever your method, make your best effort to let it all go.
3. Educate your loved ones on the disease.
It’s important to clearly explain what you may need for help from them, and to thank them in advance for their support. For example, if you have food sensitivities, you may pre-emptively explain that for now you need to prepare your own food, and that it’s not an insult to their skills or cooking when you are eating separately. Share useful websites
with loved ones to help explain the disease.
4. Make sure that you have a comprehensive multi-disciplinary medical “team” set up.
This core team can include: a primary care physician, functional medicine doctor and/or naturopath, nutritionist, physical therapist, and psychotherapist. An allergist, hematologist or other specialist who originally diagnosed you should be on this team. Depending on your co-morbidities, this list could be much longer and could include additional specialists like an acupuncturist and massage therapist too. Don’t stay loyal to doctors who are not a good match for you; be picky about who you have on your team!
5. Set up an Emergency Plan.
The Mastocytosis Society has some great emergency resources
for patients who experience anaphylaxis. Make sure you write out your past medical history, current conditions, and medication list and carry it with you for the event of an emergency. There are different devices like keychains that contain USBs that are useful for this (though keep in mind, not all emergency rooms are willing to access USBs, so be sure to always have a paper copy accessible).
6. Prepare your environment for all possibilities.
Consider purchasing a face mask and carry it with you to help minimize unavoidable triggers. (I personally like the Vogmask with the exhalation valve). If applicable, Order extra epi-pens and place 2 of each in your car, purse, briefcase, first aid kit, kitchen, or backpack. Include a stash of additional emergency meds (like oral anti-histamines) in each location. Make sure someone in each environment knows what to do to help you (particularly if you regularly experience anaphylaxis) and have them practice with the Epipen simulator if applicable.
7. Invest in some type of medical alert identification that you can wear.
Companies like Medic Alert and Laurens Hope make bracelets and necklaces that can include information on your name, allergens, conditions, meds and emergency contact info. If you’re looking for a more athletic type band, The Road ID also has some great customizable options.
8. Are you moldy?
Before you breeze over this section… keep in mind that mold is a stealthy and often invisible little monster that can wreak havoc on the immune system and nervous system. Unfortunately, hidden mold in a building can require very dramatic life changes requiring you to move away and sometimes even get a new car and new belongings. (But trust me, it’s completely worth it!) DO NOT CUT CORNERS HERE. If you know that water damage is an issue, without a change it’s going to be an uphill battle to make progress because your mast cells will be continuously irritated. It will be difficult to even determine what else is triggering you if you’re living and/or working in a place that is causing constant degranulation. If you suspect mold but aren’t sure, consider going camping in a warm desert for a few weeks (with borrowed gear) and your re-entry into the building will often confirm or deny the suspicion. (The “tests” for mold are tricky and not super reliable). I have a feeling that many patients with MCAS are unknowingly exposed to mold on a regular basis. For me, eliminating mold alone helped me to cut back on 4 different mast cell medications. It can make a HUGE difference. See survivingmold.com
for more information about symptoms associated with mold exposure, testing, and treatment.
9. Complete widespread toxin trigger elimination.
This is one of the most important first steps for patients with MCAS. Attempt to create a more stable “baseline” for yourself with the elimination of certain environmental factors before you begin tinkering with medications and other treatments. The following triggers can impact mast cell activation and need to be addressed: health and beauty products, lead pipes in older homes, exposure to cigarette smoke, new homes that release chemicals, furniture and clothing that are sprayed with chemicals, homes located near fracking wells, factories, pipelines or power plants, mercury dental fillings, use of household products with certain metals or plastic, and general local air quality. The website thetoxinsolution.com
has some free tools to help you determine if some of these environmental factors may be playing a role. Both current and historical exposures are important to address, because many people with MCAS have poor detoxification pathways and find these toxins build up more so than the average person to wreak additional havoc on the system.
10. Clean air & clean water!
Once you’ve ensured that your living and working arrangements are as reduced of toxins as possible, you may want to consider investing in a HEPA air purifier for those areas, and especially for where you sleep at night. Clean air is so important! It’s also important to drink filtered water when possible to avoid exposure to additional heavy metals that can influence mast cell degranulation.
11. Avoid un-necessary ongoing exposure to chemicals and cleaning supplies.
Delegate house-cleaning tasks and leave the house when they are done. Try not to do them all at once. Use the most “natural” cleaning supplies possible and wear a mask and gloves with the windows open if you must do it yourself.
12. Buckle down and make healthy dietary changes, if you’re not doing so already.
This is where things get a little controversial with MCAS. There’s much discussion about a “low histamine diet” for MCAS and I’ll share my two cents on that in a future blog post. For now, my best tips are the following: Eliminate processed foods as best as possible. Eliminate or reduce dairy, gluten, grains, and artificial sugar sources, and keep the alcohol to a minimum. If you eat meat, go for the grass-fed organic options. Avoid farm-raised fish and fish that is high in mercury content. Avoid high-fructose corn syrup at all costs! Fill your life with energy-giving fruits and vegetables. Consider juicing and/or smoothies. If you can’t afford to buy all organic fruits and vegetables, try to prioritize opting organic for the “dirty dozen” that are most commonly laden with pesticides.
13. Consider a short elimination diet trial.
My current (anecdotal) advice is this: Consider a 2-3 week elimination diet at the beginning to help ensure that you’re aware of every food that may be a trigger of symptoms. Add one new food every three days to catch any delayed reactions. Form a healthy relationship with food and try not to focus on the “no” list. Respect those foods with which you have a true allergy or consistent mast cell reactions, but try to keep your diet as diverse as possible. (Easier said than done, right?! This should improve with time as you find the right toxin elimination practices and medication combo. Start wherever you can and consider it an evolving process). Keep a journal during this early time frame to help identify food-related triggers.
14. As you begin to add medications and/or supplements (with the help of your doctor), add one at a time in a very controlled and meticulous manner.
Make sure you try different versions of the same active ingredient in separate trials (ie- generic and brand versions) because many patients are sensitive to fillers and dyes in certain medication formulations and may react to one version and find symptom relief with another. Give ample time to try different dosages as well, and consider keeping a short-term symptom log until you find the right medication combination.
15. Re-structure and re-organize your life to promote maximal healing.
If you aren’t already, this means making difficult but necessary adaptations to:
16. Fine-tune your exercise habits.
A gradual and graded approach is best; some MCAS patients do better with yoga, while others prefer walking, and some find that body weight exercises or light weight lifting is less of a trigger than aggressive cardio, while others can still run marathons. Figure out what feels best for your body, and if you’re currently inactive start out small; 5 minutes a day is a great place to begin!
17. Seek out social support.
There are many great Facebook pages
and groups out there, Instagram accounts
, and other resources. You can access free support groups and a buddy program here
. These groups can help you feel less alone with the condition, and can also be a resource for your unanswered questions.
18. Avoid over-identifying with the disease.
This suggestion immediately follows the social support for a reason. Sometimes the public posts can be discouraging or negative, and it’s important to have a balanced life and a positive mindset. It’s important to feel validated with what you have experienced and are currently going through, but make sure you keep your identity in the things that you are most passionate about.
19. Listen to your body, let yourself rest, and be compassionate toward yourself.
Respect your limitations and let go of people in your life who aren’t willing to do the same. Surround yourself with people who are life-giving.
20. Get involved with awareness and advocacy!
Molderings and colleagues found that nearly 1 in every 5 people have MCAS. The disease is largely under-recognized and under-diagnosed. Organize a fundraiser walk for research, participate in a patient survey, sign up to share your story
in our monthly patient spotlight, or get involved in other creative ways.
Do you have any other beginner tips? Please share below in a comment!
Molderings et al. Familial Occurrence of Systemic Mast Cell Activation Disease. PLOS One. 2013.