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MCAS - Symptoms, Causes, Diagnosis and Treatment - Dominick Hussey

Mast Cell Activation Syndrome – Symptoms, Causes, Diagnosis and Treatment

Mast cell activation syndrome (MCAS) is a type of mast cell activation disorder (MCAD).

MCAD is the term for describing the whole spectrum of diseases of the mast cell.

There are two main types of primary mast cell diseases including:

  1. Mastocytosis – A rare mast cell activation disorder caused by the presence of too many mast cells and mast cell precursors. People affected by mastocytosis are susceptible to itching, hives, and anaphylactic shock, caused by the release of histamine from mast cells.
  2. Allergic-type phenomena –  Like allergies, urticaria, angioedema, and anaphylaxis.

There is a third type of MCAS where we observe inappropriate activation of the mast cells, where we cannot describe it as either Mastocytosis or an allergic-type phenomenon. We label this type of MCAD under the MCAS banner.

Read on to learn about the symptoms, diagnosis, causes, testing and treatment of MCAS.

What are the typical symptoms and systems affected by MCAS?

MCAS may affect virtually any system in the body. So by definition, MCAS may cause a multitude of different symptoms.

Neurological System

Neurologically, you may see symptoms of fatigue and cognitive dysfunction that a lot of people describe as “brain fog.”

There may be a motor and sensory neurologic issues.

And if the central nervous system is affected, there could be psychiatric issues including anxiety and depression.

Cardiovascular system

MCAS may affect the cardiovascular system with all sorts of autonomic related issues including:

  • Variability in pulse and blood pressure
  • Palpitations or Tachycardia or increased heart rate

Musculoskeletal system

MCAS may cause a lot of muscle pain, which is diffusely migratory. There may also be bone issues including osteopenia and osteoporosis.

Gastrointestinal (GI) System

MCAS can cause all sorts of issues in the GI tract including acid reflux, nausea, vomiting, and alternating diarrhea and constipation.

The Skin

We find mast cells predominantly at environmental interfaces on the outside of the body where they’re best positioned to serve out their principal role and defence. As such we see many skin issues with MCAS including rashes as well as nail and hair problems.

When you think about the biology of this, where do mast cells reside in the body? Well, there are present in every vascularized tissue, but they dominantly site themselves at the environmental interfaces and also perivascular sites. So that’s

Respiratory System

The lungs are another example of an environmental interface found in the body. As such, patients with MCAS can describe intermittent problems with shortness of breath, and sometimes wheezing.

Genitourinary (GU) System

The GU tract is another environmental interface. So MCAS patients may experience irritation and pain in the urinary tract.

Immune System

MCAS can reduce the function of the Immune system so leading to a wide range of possible consequences, including:

  • Increased susceptibility to infection
  • Increased difficulty with healing from infections and wounds
  • Increased risk for malignancies
  • Increased risk for autoimmune disease

We could go on to the other systems in the body, but I think you get the point that it’s just a bewilderingly vast array of potential symptoms.

Diagnosis of MCAS

The sheer number of different symptoms and the fact that each person can have different symptom picture makes diagnosing MCAS extremely difficult.

According to MCAS expert Dr Lawrence Afrin, most patients who are ultimately found to have MCAS have been searching for help with their symptoms for a very long time, typically for decades.

Cause of MCAS

At present, there are no scientifically validated cause for MCAS only possible theories.

One theory originates from researchers at the University of Bonn Germany. They suggest that MCAS patients may have mutations in the controlling elements of the mast cells. This opinion has not yet been verified so we more research to understand the cause better.

Testing for MCAS

Currently, there is no single reliable laboratory test available for the diagnosis of MCAS. There are some tests available that collectively give a good indication of MCAS.

  • Serum Tryptase – Measuring tryptase levels in the serum can be very helpful in diagnosing mastocytosis. We usually see tryptase levels elevated at least double the upper limit of normal and quite often much higher than that in mastocytosis. However, in MCAS, tryptase is usually normal. Or if it is elevated, it’s just very slightly raised. So it is undoubtedly a good idea to check a serum tryptase when looking for MCAS.
  • Serum Chromogranin A – Chromogranin A (CgA) is a protein released from neuroendocrine cells. These are cells that secrete hormones in response to signals from the nervous system. When measuring serum CgA, you must rule out that the patient does not have heart or renal failure, has not taken proton Pump Inhibitors in the last three days and does not have neuroendocrine cancer. If you have ruled out all the above, then an elevated CgA level is a good indication of MCAS.
  • Plasma and Urine Prostaglandin D2 – Prostaglandin D2 is a significant prostaglandin produced by mast cells.
  • Plasma heparin – Heparin is a compound occurring in the liver and other tissues that inhibits blood coagulation. According to Dr Lawrence, Afrin plasma heparin is a helpful, sensitive and specific test for MCAS.
  • 2,3-Dinor-11beta-prostaglandin F2 alpha – 2,3-Dinor-11beta-prostaglandin F2 alpha is a metabolite of prostaglandin D2.
  • Urine Histamine
  • Urine N-methylhistamine
  • Urine Leukotriene E4

Treatment of MCAS

Because of the complicated nature of MCAS, I recommend a simple step by step approach to treatment.

Step one: Identify and avoid the triggers

Before looking for the underlying cause of MCAS, it is vital to reduce any symptoms. The first part of this is to identify and withdraw any triggers. Typical triggers include high histamine foods so following a low histamine elimination diet is useful. A low Fodmap diet may also be worth trying as it has been shown to lower histamine levels in the body. For my clients, I tend to start with the low Fodmap diet. If symptoms do not reduce to a manageable level, then we try a low fodmap low histamine diet.

Step two: Identify an optimal antihistamine regimen

The second part of controlling symptoms is to find an optimal antihistamine regimen. There are two types of antihistamines you can try, medications and supplements.

Medications

If symptoms are severe, it may be necessary to use antihistamine medications. There are two types of antihistamine medications, H1 and H2 blockers.

H1 Blockers

H1 antagonists, also called H1 blockers, are a class of medications that block the action of histamine at the H1 receptor, helping to relieve allergic reactions. There are two types of H1 blockers, sedating and non-sedating. Since fatigue is such a common symptom in MCAS, it is better to use a non-sedating kind of H1 blocker. Examples of non-sedating H1 blockers include Allegra and Claritin.

H2 Blockers

H2 antagonists, sometimes referred to as H2RA and also called H2 blockers, are a class of medications that block the action of histamine at the histamine H2 receptors of the parietal cells in the stomach. They are typically used to reduce the production of acid in the stomach. Examples of H2 Blockers include Pepcid and Zantac.

When treating MCAS, you will often need a combination of an H1 and H2 blocker. There is no easy way to find the right combination except through a patient step by step trial and error approach. At this point, I would highly recommend you try this under the supervision of your doctor or trusted healthcare practitioner.

Natural Antihistamines

Natural antihistamines that have been shown to reduce histamine levels in the body include:

Step Three: Identifying and treating the cause

As I mentioned above, there is no known cause fore MCAS only theories.

In my clinical practice, I see a strong association between the presence of SIBO and excess histamine. This observation may explain why a low fodmap diet can be a useful tool for reducing a high histamine body load and reducing symptoms.

Regarding cause, I see some parallels with MCAS and true Fibromyalgia. Research has shown a possible link between fibromyalgia and childhood trauma. There has also been some research looking at an association between histamine and stress.

Based on the above observations I suggest a two-step approach for looking at the underlying cause of MCAS.

Step One – Looking for Infections

Assuming that we have already removed any food triggers from the diet then the next step would be to look for any gut infections in particular SIBO. You can do this by using a Lactulose Breath Test.

Step Two – Identifying and Resolving any Past Emotional Traumas

There are some treatment modalities that I recommend and may help with past emotional trauma, some are scientifically validated and some not.

Acupuncture

BodyTalk

Energy Healing

Meditation

Mindfulness Training

Disclaimer

This article is not intended to provide medical advice, diagnosis or treatment.

Now I’d like to hear from you. Let us know in the comments below.

 

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histamine-intolerance

Histamine Intolerance: Everything You Need To Know

Do you endure unexplained headaches or migraines? What about difficulty falling asleep? Do you react badly to mosquito bites? Do you experience irregular periods? If you said yes to any of these questions, then you could have a histamine intolerance.

What is histamine?

Histamine is a chemical associated with your immune, digestive, and central nervous systems. As a neurotransmitter, it conveys important messages from your body to your brain. It is also an ingredient of stomach acid that helps you digest food in your stomach.

You might be most intimate with histamine as it associates with the immune system. If you’ve endured seasonal allergies or food allergies, you may have noticed that antihistamine medications such as Zyrtec, Allegra or Benedryl provide quick relief of your symptoms. This process occurs because histamine’s role in the body is to cause an immediate inflammatory response. It serves as a warning to your immune system, of any potential threats.

Histamine causes your blood vessels to widen, or dilate so that your white blood cells can quickly find and attack an infection. The histamine accumulation is what gives you a headache and leaves you feeling flushed, itchy and miserable. This process is part of the body’s natural immune response, but if you don’t break down histamine correctly, you could develop what we call histamine intolerance.

Because it travels throughout your bloodstream, histamine can affect your digestive tract, lungs, skin, brain, and cardiovascular system, leading to a broad range of symptoms that can make it difficult to diagnose the underlying cause.

Typical symptoms of histamine intolerance

  1. Headaches/migraines
  2. Difficulty falling asleep, easily arousal
  3. Hypertension
  4. Vertigo or dizziness
  5. Arrhythmia, or accelerated heart rate
  6. Difficulty regulating body temperatureAnxiety
  7. Nausea, vomiting
  8. Abdominal cramps
  9. Flushing
  10. Nasal congestion, sneezing, difficulty breathing
  11. Abnormal menstrual cycle
  12. Hives
  13. Fatigue
  14. Tissue swelling

What Causes High Histamine Levels?

  1. Allergies (IgE reactions)
  2. Small Intestinal Bacterial Overgrowth (SIBO)
  3. Increased Intestinal Permeability or Leaky gut
  4. Parasites
  5. Gastrointestinal bleeding
  6. Fermented alcohol like wine, champagne, and beer
  7. Diamine Oxidase (DAO) deficiency
  8. Histamine-rich foods
  9. In addition to the histamine made in your body, there is also a mixture of foods that naturally contain histamine, create the release of histamine, or block the enzyme that breaks down histamine, Diamine Oxidase.

How do I break down histamine?

Once made, histamine is either stored or broken down by an enzyme. Histamine in the central nervous system is broken down primarily by histamine N-methyltransferase (HMT) while histamine in the digestive tract is broken down mainly by diamine oxidase (DAO). Though both enzymes play a significant role in histamine break down, the American Society for Clinical Nutrition found that DAO is the primary enzyme responsible for breaking down ingested histamine. So if you’re deficient in DAO, you likely have symptoms of histamine intolerance.

Causes of Low DAO

  1. Gluten sensitivity
  2. Intestinal Permeability
  3. SIBO
  4. DAO-blocking foods: alcohol, energy drinks, and tea
  5. Genetic mutations (common in people of Asian-descent)
  6. Gut Inflammation from Crohn’s, ulcerative colitis, and inflammatory bowel disease.
  7. Medications: Non-steroidal anti-inflammatory drugs (ibuprofen, aspirin), Antidepressants (Cymbalta, Effexor, Prozac, Zoloft), Immune modulators (Humira, Enbrel, Plaquenil), Antiarrhythmics including Propranolol, Metoprolol, Cardizem, and Norvasc, Antihistamines including Allegra, Zyrtec, and Benadryl, and Histamine (H2) blockers including Tagamet, Pepcid, and Zantac.

Although histamine blockers, a class of acid-reducing drugs, seem like they would prevent histamine intolerance, these medications can deplete DAO levels in your body.

Testing for Histamine Intolerance

Elimination/Reintroduction

Remove the above high histamine foods for 30 days and reintroduce them one at a time.

Click here to download a free copy of my Histamine Intolerance Food List

Blood Testing

You can ask your doctor to test for histamine and DAO levels. A high ratio of histamine to DAO means that you are ingesting too much histamine and that you don’t have sufficient DAO to break it down.
Trial of DAO

If testing is unavailable to you, you could only try a diet low in histamine and add DAO supplementation at each meal. If your symptoms resolve, you could have reduced DAO.

How to Treat Histamine Intolerance?

  1. Remove the high histamine foods for 1-3 months.
  2. Add in a supplement of DAO by taking two pills at each meal. Most importantly, find the root cause of the histamine intolerance. If you’re on a medication that is causing the intolerance, working, with your physician, to wean off of these medications is essential. The main reasons I see in my practice are SIBO and gluten intolerance, which cause a leaky gut.
  3. If you currently have histamine intolerance, you may not have to avoid these foods permanently. It can be a short-term answer until your histamine or DAO levels revert to their optimal ranges. Depending on your personal circumstances, you may discover that you tolerate some foods better than others, so I encourage you to stay positive as you learn priceless information about your body!

If you have any questions about this article either post them in the comments section below or email using the form on my contact page.

Disclaimer

This article in not intended to provide medical advice, diagnosis or treatment.