I was diagnosed with Mast Cell Activation Syndrome (MCAS) a year ago in mid-2017. I sought the help of an allergist because I was having an increase in anaphylactoid reactions to common foods that I ate regularly. My “root” allergy has always been latex, and, over time, the list has grown to include foods related to latex: banana, kiwi, avocado, and chestnuts. As time has gone on, however, the list has grown to include walnuts, peaches, buckwheat, certain flowers and herbs related to ragweed, sugar alcohols, and other things. I have also had a history of having allergic reactions to medications and fillers and dyes in medications. I developed an intolerance to cow’s milk that is not related to lactase deficiency, and I do not easily digest animal protein anymore. I will have weird hive-like skin reactions within minutes of eating foods that I’ve eaten for years. I have celiac disease as well, and I have spent most of my life perpetually iron-deficient anemic. I developed chronic migraine disease in my early 30s and later came an erroneous diagnosis of fibromyalgia and even SLE. I was diagnosed with moderately severe endometriosis at 15 years of age.
After being treated by a neurologist, rheumatologist, and allergist, I was taking seven to ten prescription medications at any given time just to achieve homeostasis. And, I felt remarkably unwell. The fatigue, brain fog, and body pain were intolerable to me. I have four daughters. I am in graduate school. And, I’m a single parent now. I’m also very single-minded in my drive to get better.
So, what was the original drug regimen prescribed by my neurologist and rheumatologist?
- Topirimate: an anticonvulsant used off-label to treat migraines. By the way, topirimate contributes to major cognitive blunting. At doses above 75 mg, you will feel like the Village Idiot.
- Verapamil: a calcium channel blocker used to diagnose and treat cluster headaches. Also, it is a treatment for Kounis Syndrome–a heart condition co-morbid with allergic reactions. (1) The drug seems to have some mild mast cell stabilizing effects. (12)
- Carbamazepine: an anticonvulsant also used to diagnose and treat trigeminal neuralgia. In other words, if you take it and your TGN gets better, then you have TGN.
- Amitriptyline: a tricyclic antidepressant used for neuropathic pain but also for migraine control and a slew of other issues. Interestingly, tricyclics have been linked to mast cell stabilization. (2)
- Plaquenil: a first-line pharmaceutical treatment for SLE (Lupus). Some medical literature suggests that it has some mast cell stabilizing effects and could be used in a drug regimen for treatment. (3)
As needed (or PRN) medications are triptans for migraine, anti-emetics for nausea most notably promethazine (which is also an anti-histamine), a narcotic prescription for intractable migraine pain to avoid an ER visit, methylprednisone for post-anaphylaxis treatment or prolonged mast cell events, and methocarbamol for muscle pain (which never worked as I never actually had myalgia).
The drugs prescribed by my allergist:
- Cetirizine Hcl (Zyrtec): a second-generation OTC antihistamine. Benadryl is a first-generation OTC antihistamine notorious for causing sedation. The recommended dosage for cetirizine is 10 mg once a day. For a mast cell patient, you can take it three times a day. Of note, this drug is faster acting than loratidine. (4)
- Ranitidine (Zantac): a histamine-H2 blocker. Our stomach linings are loaded with mast cells, and this drug acts on histamine-H2 receptors there.
- Omalizumab (Xolair): a recombinant DNA-derived humanized IgG1κ monoclonal antibody that selectively binds to human immunoglobulin E (IgE). The antibody has a molecular weight of approximately 149 kiloDaltons. Xolair is produced by a Chinese hamster ovary cell suspension culture in a nutrient medium containing the antibiotic gentamicin. Gentamicin is not detectable in the final product. Of note: this drug can cause anaphylaxis which is ironic because mast cell patients usually take this to stop anaphylaxis. So, I go to a hospital, receive two injections, and sit for 30 minutes. So far, it has been remarkably effective and changed the quality of my life substantially.
In my experience, mast cell disease seems progressive, and Dr. Afrin’s research seems to confirm that. I continue to develop new triggers for mast cell activation events. It is important to note that a mast cell activation event is not a classic IgE-mediated allergic reaction. When I experience a mast cell activation, the first thing I feel is sustained dizziness. It is a very particularistic kind of lightheadedness, and it doesn’t go away. It is then followed by a feeling of flushing and hot flashes. I will start sweating. This sounds like the very beginning of an allergic reaction. The issue here is that it usually does not progress beyond this. So, what does one do then? Take a mast cell stabilizer right away (Quercetin) and antihistamines.
Well, my drug regimen has changed over the course of a year. This is what I am currently doing as of July 2018:
- Cetirizine: 10-20 mg/day. I only use ranitidine during anaphylaxis, and, of course, there are times when prednisone is added to the mix.
- Quercetin: a flavanoid that is as or more effective than Cromolyn in stabilizing mast cells per this study–“However, Que is more effective than cromolyn in inhibiting IL-8 and TNF release from LAD2 mast cells stimulated by SP. Moreover, Que reduces IL-6 release from hCBMCs in a dose-dependent manner. Que inhibits cytosolic calcium level increase and NF-kappa B activation. Interestingly, Que is effective prophylactically, while cromolyn must be added together with the trigger or it rapidly loses its effect. In two pilot, open-label, clinical trials, Que significantly decreased contact dermatitis and photosensitivity, skin conditions that do not respond to conventional treatment. In summary, Que is a promising candidate as an effective mast cell inhibitor for allergic and inflammatory diseases, especially in formulations that permit more sufficient oral absorption.” (5) Note that it can be used prophylactically.
- Omalizumab infusions: every 4 weeks
- Medicinal cannabis: I am certified for medicinal cannabis. I use an oil that is inhaled through vaporizing or “vape” oil. It is 50% CBD and 50% THC. There are components in the cannabis plant that halt mast cell degranulation. (6),(7), (8), (9). It is highly effective. Why not do just CBD and forgo the THC? CBD is not bioavailable without some THC. THC is the key that unlocks CBD. They need each other because they act synergistically. (10)
- I still have PRN medications on hand because migraines happen, but they are not as frequent as they were a year ago.
Reducing the number of prescription medications I was taking was inordinately helpful not only for my kidneys and liver but also for my cognition. I don’t know anyone who likes loading up on pharmaceuticals particularly people who may be allergic to the dyes and/or fillers.
Of course, the first line of defense in dealing with mast cell disorders is your diet. I’m a gluten-free vegetarian–walking the vegan line. A plant-based diet has been the most effective for me in managing mast symptoms and promoting health, and it lines up with my personal ethics. Whole foods with as little ingredients as possible has provided me with the longest stretches between degranulation events and, of course, anaphylactoid events.
The other big change is that I have received a year and a half of acupuncture treatments with some very good results and some questionable ones, too. (11) . All in all, it has helped. As for Chinese herbs? I would love to take them, but I’m allergic to a lot of them. I will, however, keep trying although it does feel like playing Russian Roulette sometimes.
The question of supplements always arises. As much as we try to get it all in our food, it’s not quite possible. So, should I risk it what with all those potential triggers? And if so, what? I’m a vegetarian so I must take B12. Here is what else I take…
- Emergen-C Immune+: I drink this daily with no perceivable reactions.
- Gaia Herbs Turmeric Supreme: Turmeric is too important not to take. Refer to citation for all the awesome health benefits. (13)
- Monolaurin: What is monolaurin? This. The current literature suggests that mast cell disorders worsen over time after a sub-clonal mutation. (15) (16) This mutation could have been triggered by exposure to stressors, trauma, virus, or bacteria. I was exposed to a mycoplasma infection before my symptoms increased in intensity, and the infection was never treated. There were other stressors to be sure, but I can actually do something about this particular microbial stressor. Monolaurin may have some effect in treating certain infections, and, if one doesn’t have a coconut allergy, then try it. Studies suggest that it can treat certain infections.
- Proteolytic Enzymes: refer to this article for his list of source citations. This is important to use in concert with monolaurin. It also aids in digestion which is significant for mast cell patients as dyspepsia is often a co-morbidity..
- Inulin and S. boulardii: I take inulin because it is a pre-biotic and S. boulardii because it is a potent probiotic. Most people with mast cell disorders have gut biome deficiencies, and this probiotic combined with inulin will go a long way in restoring it. (14)
- Consider looking into methylated B vitamins particularly if you have the MTHFR mutation. Also, B vitamins are vital for mitochondrial function. For more information on mitochondrial health, check out the work of Dr. Terry Wahls and the Wahls Protocol.
- I also take chlorella, but read up on it. It is very active in the body and does activate the immune system.