MCAS: The Life-Altering Illness You’ve Never Heard Of

In 2024, at the age of 49 years old, I was diagnosed with Mast Cell Activation Syndrome (MCAS)—a chronic, often invisible illness that is widely misunderstood and frequently underdiagnosed. It is complex, relentless, unpredictable and profoundly life-altering.

The simplest definition of MCAS is this: A chronic disorder of mast cells—the immune cells that release histamine and other chemicals—that misfire and release too much, affecting multiple systems in the body. While it sounds like an autoimmune disorder, it’s not. It’s a form of immune over-activation, not immune self-attack. Mast cells are the body’s alarm system, and in MCAS, the alarm system becomes overly sensitive, and goes off when it shouldn’t, without a clear trigger.

Some of my minor symptoms started years ago, some of the more serious ones started two years before the illness hit me full force. None of the doctors and specialists I went to knew what was wrong, except for the doctor I’m seeing now. And I came down with this severe illness despite my healthy lifestyle—walking 2-3 miles a day, lifting weights, going to bed early, drinking a ton of water, eliminated alcohol and caffeine, increased my protein, took supplements and hormone replacement therapy (HRT), journaled, did work I enjoyed, spent time with loved ones, worked on my spiritual life and went back to church. This illness has completely stopped my life.

Here is a list of all my symptoms:

IMMUNE/ALLERGIC REACTIVITY
-- Multi-system inflammation
-- High white blood cell count
-- Oxalate Intolerant
-- Histamine Intolerance (HIT)
-- Allergic/intolerant to all foods but four
-- Allergic/intolerant to most personal care products
-- Allergic/intolerant to many medications and supplements
-- Allergic/intolerant to jewelry (including my wedding ring)
-- Allergic/intolerant to smells (Multiple Chemical Sensitivity, MCS)

ENVIRONMENTAL SENSITIVITY
-- Sensitive to barometric pressure changes
-- Indoor light sensitivity (I can’t have any lights on in the house. We use flashlights to get around at night.)
-- EMF sensitivity (5G, WiFi, Bluetooth, Electricity, Microwaves, Fans). We’ve had to turn our WiFi off and use a wired internet connection. We’ve also had to turn of the circuit breakers to the areas of the house where I spend most of my time.

AUTONOMIC NERVOUS SYSTEM DYSREGULATION
-- Flushing
-- Drops in blood pressure
-- Heart rate too fast or too slow
-- Temperature fluctuations (can’t get warm)
-- Adrenaline surges (shock-like feeling)
-- Insomnia (Taking 2-3 hours to fall asleep, sleeping for 2 hours, then awake the rest of the night, or waking up every 5-30 minutes.)

NEUROLOGICAL
-- Headaches
-- Brain fog (forgetting actions, words, spelling)
-- Weakness causing legs to give out
-- Numbness in my arms, hands, legs and feet

VESTIBULAR
-- Vertigo
-- Dizziness
-- Lightheadedness
-- Unsteady/off balance while walking
-- Tinnitus (ear ringing)
-- Ear itching
-- Ear leaking
-- Ear flaking
-- Ear aches

RESPIRATORY
-- Coughing
-- Choking
-- Weak voice
-- Post-nasal drip
-- Trouble breathing (lungs feel like collapsing)
-- Trouble swallowing (throat closing sensation)

GASTROINTESTINAL
-- Nausea
-- Vomiting
-- Constipation
-- Diarrhea (burning)
-- Stomach pain and cramps
-- Bloating (like a beachball)
-- Inability to absorb certain minerals and vitamins

GENITOURINARY
-- Genital pain
-- Frequent urination and burning
-- Bladder pain (mimics a bladder infection)
-- Kidney pain (hard to sit, stand or lay down)

MUSCULOSKELETAL
-- Sciatica
-- Pelvic pain
-- Nerve pain
-- Muscle aches
-- Muscle spasms
-- Muscle twitches
-- Muscular skeletal and joint pain (arthritis-like)

OROFACIAL/DENTAL
-- Tooth pain
-- Bruxism (teeth grinding)
-- Temporomandibular Joints Disorder (TMJ)

DERMATOLOGICAL
-- Dry skin
-- Pale skin
-- Acne
-- Hyperpigmentation
-- Swollen-feeling all over
-- Burning mouth
-- Burning skin (blow-torch sensation)
-- Itching skin (rash-like sensation)
-- Crawling skin (insect-like sensation)
-- Pokey/needle-like skin sensation (including eyes and genitals)
-- Welts and scabs from lightly scratching or towel friction

OPHTHALMOLOGIC
-- Swollen eyes
-- Itchy eyes
-- Eye floaters
-- Blurred vision
-- Eye pain (needle-like sensation)

METABOLIC/HEPATIC
-- High ferritin
-- High cholesterol
-- Prediabetes
-- Insulin resistance
-- Blood sugar dysregulation
-- Inability to lose weight
-- Nonalcoholic Fatty Liver Disease (NAFLD)

ENDOCRINE/HORMONAL
-- High cortisol
-- Hypothyroidism
-- HPA-Axis Dysregulation
-- Poor response to hormone replacement therapy (HRT)

PSYCHOLOGICAL
-- Anxiety
-- Depression
-- Suicidal thoughts

If I wasn’t living this, it would be impossible to believe that this can happen to the human body. But there is hope. I am with an incredible medical team, comprised of medical doctors, a physical/visceral therapist, an acupuncturist and somatic therapist who are all functionally trained. They have performed miracles on those who are chronically ill with mysterious conditions that other medical professionals have long given up on. In the midst of this nightmare, I feel a deep gratitude toward this team, my husband and God. And I do my best to hold on to the belief that I will come through on the other side.

“Blessed is the one who perseveres under trial because having stood the test, that person will receive the crown of life that the Lord has promised to those who love him.” James 1:12