What is Mast Cell Activation Syndrome
Hi this is Dr. Carlson. I wanted to talk about mast cell activation syndrome (MCAS). I saw a few patients in Alaska with this before I moved here to Utah. I have seen several patients here in Utah with what appears to be mast cell activation syndrome. Most of these patients also have mold illness/mycotoxin illness.
Recently however, with certain viral illnesses which affect the lungs and other organs, there are several more patients with MCAS-type problems.
What happens in MCAS is that the mast cell, which is part of our immune system’s “front line of defense” in defending us against an “intruder” such as a viral infection or mold toxins, releases it’s content of inflammatory mediators which is intended to stimulate the rest of the immune system to “kick into gear” and fight or attack the “intruder”. The problem is, the Mast Cells in this disease release their contents too readily, making the patient extra sick with signs of inflammation, swelling, pain, and other symptoms that happen with inflammation.
What are the most common symptoms of MCAS and which Organs do they most commonly affect?
The organ systems most often involved in mast cell disorders are the skin, the mucosae of the gastrointestinal (GI) tract and upper and lower respiratory tracts, the cardiovascular system, and the musculoskeletal system. The signs and symptoms arise from the ways mast cell mediators affect these organ systems.
With recent viral infections, often the lungs are involved and the patient may present with cough, chest congestion, shortness of breath, chest pain, and low oxygen, or any combination of these symptoms.
As Dr. Lawrence Afrin, M.D., (the doctor who discovered MCAS) points out, almost any other organ or part of the body can be affected.
How to Diagnose and Treat Mast Cell Activation Syndrome
Lab Tests:
One confirmation test is a Tryptase Level, but the test has to be very carefully done, and sometimes is falsely negative (is not accurate), so that it is reasonable to empirically treat with pharmaceutical or nutraceutical meds effective in decreasing the effect of the inflammatory mediators that come from the Mast Cells. The ones we know the most about are histamines and leukotrienes, although there are some 200 different inflammatory mediators that are released from mast cells.
Other common and effective lab tests to help diagnose patient with MCAS are the following: Plasma Histamine, N-methylhistamine 24 hour urine test, Serum Chromogranin A, Leukotrienes, Plasma Heparin, Prostaglandins PGD2 Urine Test.
The patient must be experiencing symptoms of MCAS in order for results from lab tests to be accurate.
Treatment:
In prescribing treatment, I look for reasons that the mast cells are destabilized to help narrow our focus on the actual triggers of MCAS with each patient. These can include any of the following three things:
Toxin Overload
Nutrient Deficiency
Hidden Infections
If the trigger is an infection, then I treat with a pharmaceutical or nutraceutical antibiotic, antiparasitic, antiviral, antibacterial, or antifungal medication or modality.
If the patient has (and they usually do) inflammation, then I use pharmaceutical or nutraceutical anti-inflammatories, optimized Vitamin D, any IVs which can decrease inflammation, Omega 3s, as well as any other modality that helps unload toxins.
If it is found that the patient has symptoms of easy clotting (hypercoaguability) they will need either pharmaceutical or nutraceutical blood thinners.
I usually will empirically start with Histamine one recepter blockers like Benadryl and Zyrtec if the patient does not have a history of heart rhythm problems (more specifically, prolonged QT syndrome). At the same time, I start the patient on Pepcid twice a day. Pepcid is known to the general public as a medicine to treat ulcers, and which decreases acid production in the stomach. But Pepcid, as a Histamine 2 receptor blocker, is also helpful for blocking H2 receptors found in other parts of the body.
At the same time, I will start the patient on Quercetin, a nutraceutical which is an H1 and H2 blocker as well as a mast cell membrane stabilizer.
Cromolyn Sodium (what we have used for many years in a metered dose inhaler ((“Intal”)) for exercise- and cold-induced asthma) is also a mast cell membrane stabilizer, and is covered by most insurances, which is a good thing, because in the oral form, it is very expensive.
A fourth category of medication (or, rather, supplement) for MCAS is an enzyme which breaks down histamines, which is called diamine oxidase. A common brand of this is “Hist-DAO”.
It is also useful to be on a low histamine diet, which you can easily google to learn more about.
*** It is important to understand that there is no main approach that works for every single patient. It requires patience and extensive communication and collaboration on both the physician’s and the patient’s part. Oftentimes patients and physicians alike want to hit the symptoms with a multi-med/multi-supplement/multi-modality approach. It is important to add one treatment modality at a time.
I hope that this little article about Mast Cell Activation Syndrome will help some of you out there who are struggling with symptoms that don’t add up to any other particular disease and are actually dealing with MCAS. I have seen and helped many patients have a great recovery and live a wonderful life once they knew what they were dealing with and how to treat it.