Understanding Mast Cell Activation Syndrome (MCAS)
WHAT ARE MAST CELLS?
Mast Cells are an essential part of your immune system and help modulate allergic and anaphylactic immune responses. When triggered, mast cells release a host of inflammatory mediators, which are substances that signal other cells and tissues to alert them to potential incoming problems.
This is a good thing... until your mast cells become 'activated' for a too long.
WHERE ARE MAST CELLS LOCATED?
Mast cells are located in mucosal and epithelial tissues throughout the body. Epithelial tissues are like large sheets of cells that cover all surfaces of the body exposed to the external environment.
Examples of these tissues include your:
- gut
- sinuses
- throat
- respiratory tract
- skin
Basically, mast cells are everywhere and this is why symptoms associated with mast cells are so widespread.
HOW ARE MAST CELLS 'ACTIVATED'?
Because mast cells are located in your airways, gut and skin, they are the first cells to interact with environmental antigens and invading pathogens and/or microorganisms. This is why any toxins or infectious agent entering through your airways, gut and skin can 'activate' your mast cells.
When you look at the image at the top of this page, the mast cell on the right has been 'activated'. When this happens, the granules (the dots in the image), are released into your bloodstream. These granules contain mediators , which include: histamine, heparin, serotonin, prostaglandin, pro-inflammatory cytokines (TNF alpha, IL-6), elastases (capable of degrading elastin), collagenases (enzymes that break the peptide bonds in collagen), tryptase (a marker of mast cell degranulation), and growth factors, to name but a few.
These mediators are the cause of the numerous symptoms associated with MCAS.
When mast cells have been 'activated', 'triggered', or 'switched on' for long periods of time, you can develop Mast Cell Activation Syndrome (MCAS).
MCAS TRIGGERS
- Mould - This is a big one and is why people with toxic mould illness (CIRS) can eventually end up with MCAS. The mycotoxins/biotoxins in your environment can trigger mast cells for so long that they eventually stay alert or hyper-vigilant and continue to release granules, causing a myriad of symptoms throughout the entire body, especially the gut!
- Other Environmental Toxins - dust, pet dander, cockroach dander, pollen, pollution, poor room ventilation, carbon monoxide.
- Foods - foods high in naturally occurring food chemicals like histamine, oxalate, salicylate, tyramine (cheese), and lectins.
- Food Additives and Preservatives - especially sulphites and nitrates, food dyes.
- Stress - emotional, mental and physical (including physical pain).
- Medicines - antibiotics, opioids, local anaesthetics.
- Supplements - many supplements can trigger mast cells, especially herbal supplements because they're high in salicylates. Contrary to popular belief, your symptoms might not be because you're detoxing or experiencing die-off... they could be because the supplements are triggering your mast cells!
- Alcohol - alcohol is very high in histamine.
- Weather - heat, cold, sudden change in temperature, rain and sunlight.
- Allergens - any known allergens (like a peanut allergy).
- Smells - fumes when near traffic, the cleaning product isle in a supermarket, the perfume section in a department store, even essential oils can be a problem for some. Leisa even had to ask her neighbour to change his laundry soap, as when he hung his washing out to dry, she experienced heart palpitations, dizziness, sweating, itching, migraines and nausea.
- Infections - viral (including COVID), bacterial (including Lyme) and/or fungal.
- Gut Bacteria - high Histamine producing commensal bacteria like Morganella, Kelbsiella pneumonia, Enterobacteriaceae spp and H. pyroli
As you can see from the list of triggers, many of them are 'environmental triggers'. This means that creating a mast cell friendly home - aka applying some 'environmental medicine' - is extremely important when dealing with MCAS. That's right, turning into a 'clean freak' will actually make you feel better!
SYMPTOMS OF MCAS
MCAS symptoms are many and fluctuate in seemingly unpredictable ways. This makes MCAS difficult to diagnose and understand. The symptoms are so broad that many of our clients have been told, "it's all in your head"... when sadly, they've been suffering profusely. 🥲
In addition, MCAS symptoms can range from mild to severe, and can get worse over time if not addressed.
You can have any combination of the symptoms below. However, most people will have some degree of the first six symptoms.
- Gut issues - leaky gut, bloating/distension, gas, diarrhoea, constipation, heartburn, nausea, vomiting, pain, discomfort, loss of appetite.
- Food chemical sensitivities and other food sensitivities and intolerances. Many people with MCAS eventually find that they can only eat about 5 foods without experiencing symptoms. Some even find that drinking water can cause them distress.
- Severe sensitivities - feeling like you're allergic to everything! Sensitive to light, sound, smells (like artificial fragrances, petrol fumes, etc), chemicals and EMFs. Some people with MCAS can't even have a massage, as touch can be too painful and/or distressing.
- Reacting to a lot of supplements and medications - Many people with MCAS report that they feel even worse when they try different treatment options and protocols. Remember, supplements can trigger your mast cells. This was certainly the case for Leisa.
- Post-exertional malaise (PEM) - exhaustion and worsening of symptoms following minimal physical, mental and/or emotional effort... where even a phone call with a friend can tap you out for days.
- Chronic fatigue - that doesn't improve with a lot of sleep and rest.
- Heart rate issues and/or POTS - tachycardia, heart pounding in your chest when you're doing nothing or sleeping, rapid heart rate, feeling light headed.
- Breathing difficulties - feeling like you can't get enough air into your lungs, shortness of breath, feeling breathless, rapid breathing/panting, asthma.
- Skin issues - rashes, hives, eczema, itching, red spots, flushing. Some people with MCAS can end up resorting to steroid creams.
- Pain - pelvic pain, pain in the joints, muscles and/or bones. Many people with MCAS report bone pain, or 'bones on fire', as a symptom.
- Bladder issues - interstitial cystitis (painful inflammation of the bladder), frequent urination, or even loss of bladder control.
- Excessive thirst (even when drinking a lot)
- Numbness and tingling in different parts of the body.
- Headaches and migraines.
- Severe anxiety and depression - including panic attacks, feeling extremely overwhelmed, emotionally upset, like you anger easily and just can't cope with life.
- Cognitive difficulties - brain fog, decreased ability to focus, memory and concentration issues, problem solving difficulties, word finding issues.
- Sore throat and sometimes a burning mouth or tongue.
- Swollen glands.
- Insomnia - sleep disturbances, difficulty falling asleep, waking through the night, restless sleep.
- Loss of balance - difficulties with equilibrium, dizziness, light-headedness, vertigo, weakness, clumsiness and other motor control issues.
- Low blood pressure - fainting.
- Difficult periods - severe PMS, painful and very heavy periods (this is because of the prostaglandin).
- Low libido - and/or painful intimacy, difficulties with intimacy.
- Vision problems - eye irritation, dry eyes, problems when trying to focus, difficulty driving at night, macula degeneration.
- Bruise easily (because of the heparin).
- Nasal congestion - sinus congestion, sinus infections, postnasal drip, nose bleeds.
- Night sweats - and temperature dysregulation.
- Anemia - iron and B12 deficiency.
- Swelling - edema - whole body swelling, often noted around the ankles, thighs, abdomen, fingers and toes. Many clients say they feel like a puffer fish!
HOW DO YOU KNOW IF YOU HAVE MCAS?
MCAS can be very difficult to diagnose and is often diagnosed based on your personal history and symptoms.
There are a few medical tests that can be done by specialists, but they are very invasive and not easily accessible.
Some lab tests are becoming popular, such as measuring mediators like tryptase, histamine, prostaglandin, etc. However, these tests are dependent upon whether your mast cells are triggered or not (what mediators they're releasing at the time of the test). This can make these tests unreliable.
WHAT NOT TO DO IF YOU HAVE MCAS
Remember, supplements can trigger your mast cells. This is why it's best to stay clear of protocols and any treatment options that involve taking supplements.
This is CRITICAL!
- Don't do detox protocols. This means, do NOT take supplements (such as milk thistle, glutathione, etc) to enhance or 'force' detoxification!
- Don't try to kill things! Don't take supplements to kill SIBO, Candida/SIFO, Parasites and/or Lyme. We know it's very tempting. There's so much information out there selling the idea to either bomb or feed your gut bugs. But please park this for now. In other words, LEAVE YOUR BUGS ALONE (for now).
This means it's best to wait before doing 'Phase 2 - The Big Clean up' and 'Phase 3 - Go Deeper' of this program.
If you think an infection or specific gut bacteria could be contributing to your MCAS... you still have to WAIT until your mast cells are more stable before addressing these things with supplements!
HOW TO STABILISE YOUR MAST CELLS
Your first step to feeling better is to stabilise your mast cells... for as long as it takes. This could take months... and that's okay!
You will know when your mast cells have stabilised, as your symptoms will reduce and you will start to feel better.
It's actually more simple than you may think: STOP TRIGGERING THEM.
Avoid as many of the triggers listed above as you possible.
1- Reduce your exposure to environmental triggers & create a safe environment
A safe ecology/environment is an absolute must, otherwise your attempts to get well will be futile.
- Get out of mould and make sure your environment/ecology (home, work, car) is safe. Visit the Mould Toxicity section for more information.
- Get cleaning! This can't be stated enough! If you're too sick to clean, pay someone to clean. It's time to become a dust buster! Visit the Detox Your Home section to learn more.
- Use fragrance free cleaning and personal care products.
2- Go on a low food chemical diet.
It's critical that you stop eating foods that trigger your mast cells!
The best diets to start with are either the Elemental Diet or the Supersafe Diet, as these can help calm everything down quickly because they're very low in Histamine and other naturally occurring food chemicals.
Some people with MCAS find the Carnivore Diet helpful, as it can simplify things to begin with. A high protein diet will also support detoxification, as it's high in many of the cofactors required to support these pathways, such as B vitamins, zinc, iron and more.
A LOW HISTAMINE DIET IS AN ABSOLUTE MUST!
Histamine intolerance can be a major problem for people with MCAS because when mast cells are triggered, they release histamine.
This is why a low histamine diet will reduce your symptoms significantly and help your mast cells to calm down and therefore stop releasing even more histamine into your body. This is super important! Visit the Histamine Intolerance section to learn more.
When you reduce the amount of histamine you consume, you empty your histamine bucket, and by default, you also lower other naturally occurring food chemicals in your diet.
Although for some people, the low histamine diet will be enough, many people with MCAS react to ALL naturally occurring food chemicals, like histamine, salicylates and oxalate - which are high in plant-based foods/diets and supplements. Visit the Introduction to Food Chemical Sensitivities section for more information.
Don't under estimate the power of diet. In fact, one of the biggest things that can help people with MCAS... and reduce their symptoms within 2 to 8 weeks... is DIET!
3- Gently open your drainage pathways with self-care practices.
As mentioned above, supplements often used as part of a detox protocol can trigger your mast cells and should be avoided at first.
This is why opening your drainage pathways should be the first step in your detoxification efforts. It involves flushing toxins out of your body to make sure they don't get trapped and then reabsorbed. This is done via:
- Encouraging bile flow
- Supporting regular bowel movements
- Stimulating healthy lymphatic flow
Here are a few of our favourite self-care practices that can gently open your drainage pathways. While these don't require taking any supplements, they can be just as powerful.
- castor oil packs
- epsom salt baths
- coffee enemas (a favourite of ours and many of our clients)
- dry skin brushing
These are cost effective and have the added benefit of supporting your nervous system.
Visit the Tool Box to find more information about how to do these.
4- Gently support and optimise your body
This is where 'Phase 1 - Set The Stage' comes in. Stay in Phase 1 of the program - Set The Stage, until your mast cells are more stable.
But, don't do the supplement protocol yet. If you really want to take something, we recommend trying magnesium and electrolytes ONLY.
IN SUMMARY:
Remember that cleaning up your environment and changing your diet are a big part of your treatment - and these should be your first steps.
Keeping a journal can help you get more in tune with your symptoms, identify your core triggers and know more precisely what you're reacting to.
HOW STIMULATING YOUR VAGUS NERVE CAN HELP
Transcutaneous Vagus Nerve Stimulation (aka - TaVNS) is a way to electrically stimulate your vagus nerve via your ear. Because your nervous system has been on high alert for so long, it's important to retrain your nervous system to feel safe. This is often overlooked but can make a big difference in your recovery. Additionally, TaVNS can stimulate bile flow, improve gut motility, support your immune system, reduce inflammation, and activate your parasympathetic system, aka relaxation response, or rest and digest state. Pretty impressive right?
Visit the How To Use a TENS Machine To Stimulate Your Vagus Nerve to learn more.
WHAT ABOUT SUPPLEMENTS AND MEDICATION?
First of all, let's reiterate that the first and most important action to take is to start the process of stabilising your mast cells by following the steps above for at least 2 weeks. This means significantly reducing your exposure to any triggers, including emptying your histamine/food chemical bucket. This should be done BEFORE trying any of the supplements or medications listed below.
While many people with MCAS react to supplements, the ones listed below are often used to help stabilise mast cells. However, they don't work for everyone. Always be careful when adding in or removing any supplement or medication. Start off with very small amounts and only ever change one thing at a time. As a general rule, we also recommend only taking single ingredient supplements and avoiding complex multi-ingredient supplements.
It's important to understand that MCAS is a relatively new condition. The first book on the subject was only published in 2016, and since then, research still hasn't caught up. A lot of doctors say that they treat MCAS using medications by trial and error and that it takes time to figure out what's going to work for each patient. This means that you might have to experiment with the supplements and medications below to figure out what might work for you.
Mast Cell Stabilising Supplements: Quercetin (bromelain free), Nettle tea, Nigella sativa (Black Seed Oil), Resveratrol, Boswellia(frankincense essential oil). Please note that some people still react to these. If you're not sure where to start, we recommend quercetin or nettle tea.
Mast Cell Stabilising Cofactors: Vitamin B2, B12 (we recommend starting with hydroxycobalamin), B6 and Magnesium. These are usually well tolerated. Folate (as 5-MTHF or Folinic Acid) can be helpful for some people, but be careful, as reactions are more common.
This is even more important if you've been exposed to mould, as it strips B6 and B12 out of your body. B vitamins also support your detoxification pathways in a safer way, when compared to other liver/detox support supplements.
Supplements to reduce histamine reactions: DAO supplements, including Desiccated Kidney (which is an excellent source of DAO), can be very helpful if you have severe histamine intolerance. However, this doesn't mean you can stop your low histamine diet.
Over The Counter Histamine Blockers: H1 Blockers like Claritin or Zyterc taken with H2 Blockers like Pepcid (must be taken with Betaine HCL to avoid low stomach acid). This can be helpful when dealing with a 'histamine storm' to quickly reduce your histamine reactions. However, we think it's best to avoid taking these on a daily basis.
Prescription Only Mast Cell Stabilising Medications: Ketotifen, Gastrocrom (Cromolyn Sodium), Low Dose Naltrexone (LDN). These can be used as a last resort.
Supplements to avoid: Lactobacillus - stop taking probiotics that contain lactobacillus (bifidobacterium only is best). Visit the Probiotics section to learn about the four categories of probiotics.
Some people with MCAS tend to do better with homeopathic approaches.
MCAS CONNECTIONS
MCAS and SIBO - we are now starting to see research that shows a strong connection between MCAS, IBS, and SIBO. This is because you have so many mast cells in your gut.
MCAS and Toxic Mould Illness - research also shows the impact of mould on the mast cell cytokine immune response and an emerging role of mast cells in response to fungal infection (like Candida/SIFO).
MCAS and Multiple Chemical Sensitivities (MCS) - people with MCAS often report feeling like they're allergic to everything and like they have to live in a bubble. Avoiding major triggers (like those listed above) will help with this immensely.
MCAS AND YOUR SKIN - baby your skin and avoid things like Tattoos, Skin Needling, Laser Hair Removal, etc. Use products for sensitive skin only and opt for fragrance free, etc.
MCAS symptoms are prevalent in Long-COVID. Many people with post viral fatigue - aka - Chronic Fatigue Syndrome - can end up with Mast Cell Activation. Viruses can trigger mast cells.
WHEN CAN I ADDRESS MY BUGS?
Once you're feeling more stable, then, and only then, can you very gently, gradually and with great caution proceed with Phase 2 - The Big Clean Up. The Big Clean Up is also progressive in nature and we recommend you cautiously start with Protocol #1 - Baby Steps.