Mast Cell Activation Syndrome

MCAS is an underlying cause of many, many symptoms, both physical and mental, and because these varied symptoms can manifest in bizarre and unpredictable patterns, and do not present in a typical way to most physicians, this underlying cause is often not considered.

And patients go from one doctor to another to another, trying this medication and that medication, with doctors scratching their heads and thinking idiopathic or atypical, which simply means they don’t understand what the heck is going on.

Mast cells are an integrated part of our natural defense mechanism with its primary function being to send out various chemicals to warn the body of an intruder, whether it’s a foreign organism, a chemical or an unexpected stressor.

They are present in every tissue of the body, but especially in the skin, sinuses, throat, gastrointestinal tract, lungs, and genitourinary tract.

The most abundant chemical that is produced by mast cells is histamine but there are hundreds of others.

In chronic mast cell activation, the person becomes hyper-reactive to chemicals, mold, a virus, and, in some cases, food and even water. For a number of reasons a person’s mast cells are unable to turn off and remain in a hyperactive state, sometimes even when the insult has been removed.

MCAS is very challenging to diagnose and to treat. It takes time and dedication on the part of the patient as well as the physician.

Here is a quote from Dr. Lawrence Afrin, MD, a pioneer in the ‘discovery’ of MCAS, from his book, Never Bet Against Occam.’

‘Furthermore, given the complexity of the disease (MCAS), the degree of improvement varies significantly between patients, but the basic principle remains as I’ve stated.

It is easy to become frustrated/disappointed/sad/depressed/despondent when intervention after intervention fails to help, but that doesn’t change the principle, and thus, by definition, the MCAS patient who achieves the therapeutic goal must find some way internally to get past the disappointments of treatment failures.

The key difference in the newly diagnosed MCAS patient’s future life vs. past life is that the patient now has a diagnosis, which can rationally guide therapeutic decision-making.

I have had plenty of patients who have finally found ‘the right drug’ on their 5^th or 10^th or 15^th medication trial.

The biggest frustration at this point is not being able to predict which of these medications is most likely to be helpful in the individual patient.’

It takes time, patience and dedication.

Let us continue.

Mast Cell Activation Triggers

Many people with MCAS are easily triggered by any number of stressors found in their environment and in relationships.

Environmental includes chemicals, mold, fragrances in soaps and cosmetics, EMFs, foods and additives, certain types of clothing, visiting markets or stores where the air is circulating chemicals, hot and cold, sunlight, etc.

Become more aware of triggers and do your best to remove them.

If you have mercury dental amalgams consider replacing them but speak with Dr. Haskell first.

Relationships should be best confined to those who have some understanding about what you are going through with this condition.

I suppose the most important relationship is the one you have with yourself. Do not be too hard on yourself and develop a state of self-awareness, forgiveness and patience.

Hope with immediate expectations goes a long ways to accompany you along this journey.

Mast Cell Activation Symptoms & Conditions

Mast cells, because of their secretion of diverse chemicals, can produce a wide variety of symptoms and conditions in various parts or tissues of the body and brain.

You can see by the image to the left some, but not all, of the conditions that can arise from these secretions.

Overactive mast cells can be the underlying cause and the objectives of the physician are the following;

Take a very detailed history, physical exam and review of symptoms to see if MCAS is possible.
Perform the most pertinent tests to differentiate between MCAS and other possibilities such as a Carcinoid tumor.
Find the right supplements and/or medications which are appropriate for each client. There is no set criteria or formula which guides the physician regarding this.
Investigate what the possible causes are which have led up to MCAS and, if possible, remove them.
Possible causes are the following;
- Continued exposure to environmental toxins
- Underlying chronic infection which has not been discovered as yet.
- Mold exposure
- Chronic infection due to an infected tooth.
- Chronic viral infection
- Compromised pathways of detoxification (liver, gall bladder, colon and kidneys)
- Gut issues (leaky gut, SIBO, parasites, etc.)

MCAS Lab Testing

There are a few labs which can be run, yet, even if results are negative, they do not necessarily rule out this condition.

We used to think that Tryptase was an equivocal test, but it’s not, partly because it is often negative with confirmed MCAS, but it’s also a very, very difficult blood draw, needing to be kept cold all the time from the blood draw to the analysis, passing through many hands and a long distance.

Plasma histamine; the collection process is challenging with histamine being very ‘fragile’ and metabolized quickly. When the blood is collected it must immediately be cooled, like Tryptase. Centrifuge, spinning the blood into its parts must be done in a ‘cold’ centrifuge.
N-methylhistamine 24 hour urine test
Prostaglandins PGD2 urine test
Serum Chromogranin A
Plasma heparin; collection similar to plasma histamine
Leukotrienes

The issue with getting accurate results is that usually the person must be experiencing an acute crisis.

Good luck with getting them to the lab when they’re in a crisis.

MCAS Supplements

These supplements help to stabilize mast cells to reduce histamine release.

Quercetin
D-Hist which has both quercetin and Stinging Nettles
Pancreatic enzymes
Vitamin C
Vitamin B6 in the P5P form
Omega III fatty acids
N-Acetylcysteine
Methylation donors (SAMe, B12, Methyl-folate, riboflavin)
Lactobacillus rhamnosus & Bificobacter species
DAO enzymes with meals (Umbrellus DAO)

For MCAS it’s also very important to take binders which grab onto toxins in the intestines to prevent the recycling of toxins and metabolic waste back into the body.

With MCAS, a good portion of time during a visit is spent on healing the gut, and one of several binders are often recommended.

Organic Activated Coconut Charcoal
Tox Ease Binder from Beyond Balance

MCAS Medications

We definitely prefer the more natural approach, but if the decision comes down to trying a prescription, here is a list of what is available for MCAS.

Rule of thumb here is, start with the least expensive. There is little reason to start with an expensive one since we don’t know which will be the most helpful.

Just to orient you, there are various receptors on cells referred to as H1, H2, H3 and H4 histamine receptors.

Some of these are over the counter, and some are by prescription.

H1 Blockers

Diphenhydramine or Benadryl
Hydroxyzine
Doxypin
Cyproheptadine
loratadine (Claritin)
Fexofenadine
Cetirizine (Reactine)
Levocetirizine
Rupatidine
Ketotifen
The whole class of tricyclic antidepressants.
The whole class of phenothiazine anti-nausea drugs
Antipsychotic drug quetiapine

H2 Blockers

Famotidine (Pepcid, Pepcid AC)
Cimetidine (Tagamet, Tagamet HB)
Ranitidine (Zantac)
Nizatidine

Leukotriene Inhibitors

Montelukast (Singulair)
Zafirlukast (Accolate)

Mast Cell Stabilizers

Cromolyn
Pentosan

Others Include

Ivabradine when POTS, tachycardia and heart palpitations are present

Mast Cell Activation: Words of Wisdom

At a recent ISEAI (International Society for Environmentally Acquired Illness), after Dr. Neil Nathan had given a pretty comprehensive list of supplements and prescriptions to use for MCAS, the question was asked, ‘Dr. Neil, which of these do you prefer and use most often?’

He said, ‘The one that works!’

What physician doesn’t want to know what works, but if you’ve read the book by Dr. Lawrence Afrin, then you understand the deep frustrations of any physician treating MCAS.

There is no routine approach with MCAS that always works for everyone.

With MCAS it is important to be patient, to add one thing (supplement, herb, medication) at a time.

We cannot feel rushed thinking that we need to start everything at once.

Most of the work is trial and error, watching how the body responds to each new thing.

It is a partnership between the doctor and the patient, working together, to not only reduce the symptoms of MCAS but to discover and uncover the underlying causes.