Treating Mast Cell Activation Syndrome (MCAS)

Mast Cell Activation Syndrome (MCAS) is a group of disorders with different causes, presenting with episodic (sporadic) multi-system symptoms.

MCAS is usually the result of mast cell mediator release, which often isn’t caught by routine lab tests.

The content on our website is technical in nature. That is because many of the illnesses we treat are complicated. If you’re feeling overwhelmed or unsure, please contact us, or use our online MCAS questionnaire.

Mast Cell Activation Syndrome and Histamine: When Your Immune System Runs RampantMost people with MCAS have chronic and recurrent inflammation, with or without allergic symptoms. This occurs when an aspect of the innate immune system becomes overactive and releases a flood of inflammatory chemicals, which may affect every organ in the body. The symptoms of MCAS will wax and wane over time.

Another way to think of this is the symptoms will flare up and go into remission, affecting different organs and body parts, over and over again throughout a person’s life, without a common unifying theme or established diagnoses to account for the patient’s presentation of symptoms.

MCAS can present subtly but may become more serious as an individual ages. If you were to chart the symptoms of MCAS on a timeline, beginning at birth you can often identify symptoms that began at a very young age.

For some, MCAS becomes a highly probable diagnosis when they notice that they have had various symptoms of an inflammatory nature over the years.

These symptoms may include:

  • Allergies as a toddler
  • Various skin rashes that came and went
  • Disturbed gut function (possibly diagnosed as irritable bowel syndrome (IBS), gastroesophageal reflux disease (GERD) or small intestinal bacterial overgrowth (SIBO))
  • Unexplained anxiety
  • Headaches
  • Insomnia
  • Poor wound healing

Any of these symptoms could indicate MCAS.

Please contact us to discuss how Dr. Hoffman can help you. Our staff will ask some questions and discuss your options with you.

12 Tips for Living With Mast Cell Activation SyndromeWhat are Mast Cells, Mast Cell Mediators, and Histamine?

Mast cells are types of white blood cells that release up to 200 signalling chemicals, or mast cell mediators, into the body as part of an immune system stabilizing defense response against foreign invaders (parasites, fungi, bacteria, or viruses), allergens and environmental toxins.

We need mast cells to protect us from infection, heal wounds, create new blood cells, and develop immune tolerance. However, in conditions in which these cells are dysfunctional or overactive, they can cause serious issues.

Mast cells are found in most tissues throughout your body. In particular, they are found in tissues that are in close contact with the environment such as your skin, airways, and gastrointestinal tract. Mast cells are also found in your cardiovascular, nervous, and reproductive systems.

Mast cell mediators are the preformed granules secreted by mast cells in response to an outside stimulus, which can occur very quickly, in milliseconds. Mast cell mediators include histamine, proteases, leukotrienes, prostaglandins, chemokines, and cytokines. Their job is to signal and guide other cells, tissues, and organs to respond to the hostile invaders. These mast cell mediators provoke potent inflammatory responses that can include urticaria (AKA hives—skin rash and swelling), angioedema (swelling beneath the skin surface), bronchoconstriction (airway constriction), diarrhea, vomiting, hypotension (low blood pressure), cardiovascular collapse, and death, all within a matter of minutes.

Detailed Symptoms of Mast Cell Activation Syndrome

Patients who come into my office with MCAS usually have multi-system, multi-symptom inflammatory responses. These symptoms have often caused them to trudge from doctor to doctor, undergoing rounds of testing, causing them to feel extraordinarily confused as to what’s happening to their body. Because the symptoms of MCAS have so broad a reach and differ so considerably from person to person, I’d like to break them down by nonspecific, general clues, and organ system signs.

  • “I’ve been sick for as long as I can remember”
  • “I overreact to bee stings, mosquito bites, penicillin and most medications”
  • “I can’t take a full breath”
  • “Whenever I stand up I get lightheaded”
  • Insomnia/sleep disorders starting early in life
  • Tinnitus/ringing in the ears from a young age
  • Vomiting as an infant
  • Abdominal pain as an infant
  • Facial and chest flushing ( a red flush when embarrassed or stressed)
  • Dermatographism—a red line appearing on the skin when scratched with a blunt object
  • Frequent infections, cold, viruses, gut viruses as an infant, adolescent or adult
  • Fatigue and malaise
  • Frequent fevers
  • Edema—“water” accumulation in different parts of body
  • Waxing and waning of symptoms
  • Food, drug, and chemical intolerances (especially fragrances). This is a very common symptom which may be exacerbated by phase 1 and phase II liver detoxification problems as identified by gene testing
  • Sense of being cold all the time
  • Decreased wound healing
  • Hypersensitivity to much in environment, including medications
  • Weight gain or loss
  • Heat intolerance
  • Frequent family history of cancer, especially intestinal or bone marrow (hematologic)
  • Generally feeling inflamed
  • Generalized lymphadenopathy (enlarged lymph nodes)

Eyes – Red eyes, irritated eyes, dry eyes, burning eyes, difficulty focusing vision, and conjunctivitis (pink eye).

Nose – Nasal stuffiness, sinusitis, postnasal drip, hoarseness, laryngitis, nose bleeds (epistaxis), and intranasal sores.

Ears – Ringing in ears (tinnitus) and Eustachian tube dysfunction (blocked, popping ears).

Throat – Vocal cord dysfunction, throat swelling, sores on tongue/mouth, itchy throat, burning mouth, and difficulty swallowing

Skin – Hives, angioedema (swelling of the skin), skin flushing, itching, skin rashes, dermatographism (when scratched skin causes a red welt), chronic itching, urticarial pigmentosa (legion/hive-like spots on the skin), flushing, bruising easily, reddish or pale complexion, cherry angiomata (skin growths), patchy red rashes, red face in the morning, cuts that won’t heal, fungal skin infections, and lichen planus.

Cardiovascular – Fainting, fainting upon standing, increased pulse rate (tachycardia), palpitations, spikes and drops in blood pressure, high pulse or temperature, high triglycerides, lightheadedness, dizzy, hot flashes, and postural orthostatic hypotension syndrome (POTS).

Respiratory – Wheezing, asthma, shortness of breath, difficulty breathing deep, air hunger, dry cough, chronic obstructive pulmonary disease (COPD), and chronic interstitial fibrosis.

GI Tract – Left upper abdominal pain, splenomegaly (enlarged spleen) epigastric tenderness, nausea, vomiting, diarrhea and/or constipation, abdominal cramping, bloating, non-cardiac chest pain, malabsorption, GERD/acid reflux, cyclic vomiting syndrome, colonic polyps, and gastric polyps.

Liver – High bilirubin, elevated liver enzymes, and high cholesterol.

Neurological – Numbness and tingling (especially in the hands and feet), headaches, migraines tics, tremors, pseudo-seizures, true seizures, waxing and waning brain fog, memory loss, poor concentration, difficulty finding words, and spells of cataplexy (suddenly becoming disconnected from and unresponsive or unreactive to the world around).

Musculoskeletal – Muscle pain, fibromyalgia, increased osteopenia, osteoporosis, weakness, and migratory arthritis (joint pain).

Coagulation – History of clots, deep vein thrombosis, increased bruising, heavy menstrual bleeding, bleeding nose, and cuts that won’t stop bleeding.

Blood disorders – Anemia, increased white blood cell count, platelets, decreased white blood cell counts, decreased neutrophils, decreased lymphocytes, decreased platelets, reductions in CD4 helper lymphocytes, reductions in CD8 positive suppressor lymphocytes, reductions or excesses of IgA, IgG, IgM, IgE, a known condition called MGUS, myelodysplastic syndrome (reduced red cells, white cells, platelets), and increased MCV (mean corpuscular volume).

Psychiatry – Anxiety, panic, depression, obsessive compulsive disorder (OCD), decreased attention span, attention deficit/hyperactivity disorder (ADHD), forgetfulness, and insomnia.

Genitourinary – Interstitial cystitis, recurrent bladder infections, sterile bladder infections, and frequent urination.

Hormones – Decreased libido, painful periods, heavy periods, infertility, and decreased sperm counts.

Dental – Deteriorating teeth.

Anaphylaxis – Difficulty breathing, itchy hives, flushing or pale skin, feeling warm after exposure, weak and rapid pulse, nausea, vomiting, diarrhea, dizziness and fainting.

Please contact us to discuss how Dr. Hoffman can help you. Our staff will ask some questions and discuss your options with you.

Illnesses Associated with MCAS

There are a number of illnesses and conditions that can exacerbate MCAS, including chronic inflammatory response syndrome (CIRS), poor methylation as determined by genetic MTHFR defects (leading to low SAMe, which degrades histamine intracellularly), deficiencies in histamine-N-methyltransferase enzyme (HNMT; degrades histamine in the liver) and deficiencies in the gut-based diamine oxidase (DAO) enzyme, which degrades histamine found in food. Histamine is one of the many inflammatory mediators released by individuals with MCAS. For those with healthy DAO levels, nearly all the histamine derived from food sources are broken down by their DAO enzymes.

But when there’s a lack of DAO, histamine can assist in creating intestinal permeability and upregulated inflammation. If a person suffers from small bowel intestinal overgrowth (SIBO) or has significant small intestinal issues (called dysbiosis), the lining of the small intestine may be disrupted. This leads to even lower levels of the DAO enzyme and hence, intestinal permeability.

Histamine Intolerance is a Subset of MCAS

Mast cell activation syndrome (also referred to as mast cell activation disorder (MCAD)) is sometimes confused with histamine intolerance. The major difference is that with MCAS, a person’s mast cells secrete many mediators of inflammation, such as leukotrienes and prostaglandins, not just histamine—although histamine is an important component. Histamine intolerance is considered a subset of MCAS where too much histamine is released from mast cells, too much histamine is taken in by consuming histamine-containing foods, histamine is not broken down in the gut because of DAO gut enzyme deficiency, or not broken down in the liver because of HNMT deficiency.

However, histamine is not all bad; it serves useful functions as a neurotransmitter, helps to produce stomach acid, and is an important immune mediator when not in excess.

Diagnosis of Mast Cell Activation Syndrome

A proper diagnosis of MCAS requires the presence of several symptoms from the above list. In addition, other disorders should be ruled out by a specialist in functional medicine.

MCAS is so difficult to diagnose because it may present in so many varied ways that traditional health care providers are not always trained to assess. There is a tremendous range of possible presentations, with local and remote effects which wax and wane over time.

Lab tests can be done to check for mast cell mediators. Tryptase is one of the most common mediators released by mast cells in those with mastocytosis (abnormal numbers of mast cells), but not for those with MCAS (abnormal release of proinflammatory mediators by mast cells, but not an increased number, as in the much rarer mastocytosis). Lab tests can also check for other mediators, such as histamine and prostaglandins; however, most doctors and many labs, particularly those in Canada, will not run the tests that are required to make the diagnosis.

Sometimes patients are able to identify triggers of their MCAS. These may be food or non-food triggers. Pay close attention to what you’ve eaten and have been exposed to when symptoms worsen.

After symptoms have been identified, other conditions have been ruled out, lab tests have been analyzed, and some treatment techniques have proven to relieve symptoms, an official diagnosis of MCAS is made.

Please contact us to discuss how Dr. Hoffman can help you. Our staff will ask some questions and discuss your options with you.

More Information About Mast Cell Activation Syndrome

Please feel free to have a look at some articles that we have written on MCAS below.

Please contact us to discuss how Dr. Hoffman can help you. Our staff will ask some questions and discuss your options with you.

Yasmina Ykelenstam – excellent resource:  www.healinghistamine.com.  

Dr. Afrin’s website – the main researcher:  www.mastcellresearch.com. Many links to mast cell information are available on this website.

Dr. Theoharides – another major researcher: http://www.mastcellmaster.com/

Hoffman Centre for Integrative Medicine MCAS Questionnaire: http://www.hoffmancentre.com/wp-content/uploads/2017/11/7.-Mast-Cell-Activation-Syndrome-Clinical-Questionniare-November-7-2017.pdf

https://www.youtube.com/watch?v=82dmZhCBuBo

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3753019/

https://ehlers-danlos.com/2014-annual-conference-files/Anne%20Maitland.pdf

https://tmsforacure.org/symptoms/symptoms-and-triggers-of-mast-cell-activation/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4231949/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3343118/

https://www.ncbi.nlm.nih.gov/pubmed/16931289

https://www.ncbi.nlm.nih.gov/pubmed/17587883

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3069946/

https://www.ncbi.nlm.nih.gov/pubmed/22957768

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3545645/

https://academic.oup.com/humupd/article/14/5/485/812106/Effects-of-histamine-and-diamine-oxidase

https://www.ncbi.nlm.nih.gov/pubmed/24098785

http://ajcn.nutrition.org/content/85/5/1185.long

https://link.springer.com/article/10.1007/BF01997363

https://www.ncbi.nlm.nih.gov/pubmed/25773459

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4507480/

https://www.ncbi.nlm.nih.gov/pubmed/15462834

https://www.ncbi.nlm.nih.gov/pubmed/22562473

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3374363/

https://www.ncbi.nlm.nih.gov/pubmed/21244748

https://www.ncbi.nlm.nih.gov/pubmed/23784732

https://www.ncbi.nlm.nih.gov/pubmed/18394691

https://www.ncbi.nlm.nih.gov/pubmed/24060274

https://www.ncbi.nlm.nih.gov/pubmed/10415589

https://www.amazon.com/Never-Bet-Against-Occam-Activation/dp/0997319615/

https://www.amazon.com/Surviving-Mold-Life-Dangerous-Buildings/dp/0966553551