Mast Cell Activation Syndrome: The Condition that 17% of the Population Has But Nobody Has Heard Of
Mast Cell Activation Syndrome (MCAS for short) is a condition that not many know about, yet there is research showing it affects a whopping 17% of the population. Popular MCAS physician and researcher Dr. Lawrence Afrin has been quoted saying he believes 15-20% of the North American Population has this condition. While it has only gained traction in about the last 15 years, there is ample research proving its existence and explaining the implications if gone untreated.
MCAS is a disorder wherein there is abnormal activation of these immune cells which results in an inflammatory state in the body. These cells, when activated, release hundreds of pro-inflammatory chemicals including but not limited to: histamine, chromogranin-A, heparin, leukotrienes, prostaglandins, and more. Mast cells are virtually everywhere in the body and depending on where they “explode”, or degranulate, dictates what symptom a person will have. For this reason, each individual may have different MCAS symptoms and this makes diagnosis confusing and much harder to achieve for the uneducated physician. Mast cells are very important cells and while it is normal for them to de-granulate at times, if they become too sensitive or hyper, they will explode too often making those with this condition feel very ill (Read on to discover why they become too sensitive)
Some symptoms of MCAS may be:
History of allergy or asthma
Overreaction to insect bites
Flushing (facial + chest)
Dermatographism (scratching yourself then seeing a red line appear on your skin)
Itchiness or hives
Poor wound healing and easy bruising
Nausea
GERD
Bloating
Fatigue
Brain fog
Red or itchy skin after showering
Headaches
Pain
Dizziness or low-grade feeling of unbalance
Reaction to bandaids
Being sensitive to certain smells, chemicals, supplements, or medications
Being sensitive in general, whether to specific foods, environments, or sounds
Symptoms that come and go
Tachycardia or irregular heartbeat
Low, high, or fluctuating blood pressure
For women, an uptick in symptoms before menstruation
MCAS typically presents in three ways:
1. Allergic type phenomena
2. Inflammation type
3. Aberrant growths and developments (fibroids, tumors, cysts, etc)
Someone may present with one of the above types, two, or all of them.
MCAS is linked to polymorphisms in genes encoding the diamine oxidase enzyme (DAO) which breaks down histamine, as well as mutations in the RCCX gene (which also increases the likelihood of developing Postural Orthostatic Tachycardia Syndrome, Ehlers Danlos Syndrome, Chronic Fatigue Syndrome, and autoimmune disease). While there is this significant genetic component, (secondary) MCAS only manifests when there are environmental triggers and therefore having these mutations in the absence of environmental triggers is not an imminent threat.
In my clinical experience, this condition has been the missing piece for a LOT of people with Lyme, other bacterial infections, mold exposures, undiagnosed illness, and other complex chronic illnesses - BUT it’s also important not to get caught up in the diagnosis. So many people with diagnosed MCAS have become so relieved by the diagnosis that they stop looking for what triggered their condition in the first place (parasites, heavy metals, chronic mold exposure, a tick-borne infection, SIBO, or the combination of many issues going untreated for too long) and are solely focusing on treating the mast cell symptoms with different stabilizers (whether it be pharmaceutical or natural does not matter because the root issue is not being addressed).
Agents that can stabilize the mast cell and help symptoms: over-the-counter H1 and H2 blockers, prescription drugs such as ketotifen, cromolyn, low dose naltrexone, natural agents such Vitamin C, quercetin, Vitamin D, CBD oil, PEA, diamine oxidase, green tea, etc. It’s important for practitioners and patients alike to understand that every MCAS patient responds differently to each intervention. Quercetin may be a saving grace for one person while it does nothing at all for another person. To make things more complicated, new mast cells are produced roughly every 12 weeks and they may respond differently to different medications/supplements. Meaning, if you had been taking claritin which was helpful and then it suddenly stops being helpful, this may be the reason.
Following a low histamine diet can be helpful for people with this condition, but once again is very individualized. Some people with MCAS may be able to eat avocados daily (which have high amounts of histamine) but others may react very negatively to them. Additionally, some MCAS patients may not be able to eat cucumbers, a low histamine food, even though this technically should be a ‘safe’ food.
While treating the symptoms and trying to stabilize the mast cell is VERY helpful because it enables the person to feel well enough on a daily basis to function and participate in life, it’s important to understand and address what made the mast cells become dysfunctional in the first place. Working with a practitioner can be extremely helpful to distinguish your personal antecedents, triggers, and mediators; as can specialty functional medicine testing.
To give examples of what I mean by saying you need to treat the root, read on. In some MCAS patients, IgE may be elevated, but IgE is also elevated as a part of the body’s normal response to parasites which leads to degranulation that helps break down the parasite into bite-sized chunks so macrophages can more easily clear them. Histamine may be elevated, but it is likely occurring as a protective mechanism to deal with the pathogen or toxin that the cells see inside your body. Hence, thinking beyond treating the elevated lab marker is important and something that needs to be put into context.
As a caveat, all of the above applies to the more common secondary MCAS which is caused by environmental triggers, not primary MCAS which is rare and has a different genetic component. Additionally, if you know you have a COMT++ enzyme (indicating a slow function), quercetin and green tea may not be the best option as these can inhibit the enzyme even further.
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The above content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Individuals should always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition.
References:
https://pubmed.ncbi.nlm.nih.gov/32324159/
https://pubmed.ncbi.nlm.nih.gov/25944644/
https://pubmed.ncbi.nlm.nih.gov/23179866/
https://pubmed.ncbi.nlm.nih.gov/33541851/