Here are some things to aid your research.
http://www.mastattack.org/This is a very reputable site, where the author lists her references for the statements she makes. *Very* informative. The author has systemic Mastocytosis, but this site is the best source for pretty much any mast cell disorder information, told from the perspective of someone with a severe case.
http://www.mastcelldisease.com/This is a much less scientific website, written from the perspective of someone with a bad case of MCAS. She's been bloging about her life for a while, and has more recently tried starting an informative website. Worth reading as while it's not a scientific look, it's also much less sterile of a perspective. The first website's author tries to maintain her scientific objectivity which comes across very different. There are other sites too of course, but these are I'm good places to read up some. I'm going to list some common words you will run across and what they mean:
Degranulation:. The event where the mast cells release their payloads of mediators in large numbers due to a trigger. This causes a major flare of symptoms, possibly up to anaphylactoid reactions. This can go on for hours or even weeks.
Triggers:. Self explanatory, these are whatever cause degranulation with any mast cell disorder. These can be foods, illness, sunlight, temperature changes, exercise smells, any type of stress physical or emotional. Even positive emotions have been known to cause problems for some few. Etc. Any allergen will act as a trigger if allergies are present. Triggers tend to be cumulative. If say, onion causes you problems, and so does exercise and sunlight, then you might be able to eat a little onion, so long as you don't then go exercise in the sun. Or you could be out in the sun for a while, so long as you don't exercise and eat onion. But 2 of the three would cause a reaction. This additive nature is why it is absolutely
critical to keep a food journal that you also write down what else you do. I.e. activities. It's the best way to figure out what is causing you problems.
Mast cells:. These are part of the normal allergic process, and the mast cell disease process.. They are the immune system's "big guns". Though perhaps carpet bombing is a better metaphor for what they do. They have granules of "mediators" like histamine, heparin, cytokines, leukotrines, and so on. The have, and can release dozens of these
very potent mediators. In IgE allergies, what went wrong is your body makes the IgE antibodies for the wrong things, which trigger mast cells, basophils, eosinophils, or leukocytes to release their mediators. Of these cells the mast cells have the overwhelming majority of the mediators. With mast cell disease, they release these mediators without the need for IgE antibodies. Instead they release when you encounter your triggers.
Mastocytosis: extremely rare disorder that is characterized by the body making too many mast cells. Symptoms are pretty much identical to MCAS. Much easier to diagnose, however it's insanely rare at 1 in 200,000.
Urticaria Pigmentosa:. The cutaneous (skin) based type of mastocytosis. It's characterized by spots on the skin that turn into a hive if you rub them. These hives form only over the spots. They can be large spots or small ones. Some people have thousands, some have only a single spot. This is the most easily identifiable mast cell disorder.
Dermatographia:. This condition is where you can draw in you skin with a blunt instrument and create hives. This, unlike Urticaria Pigmentosa isn't restricted to just over spots. This is often a symptom of a mast cell disorder. With MCAS patients, the hives are often less raised but quite red. (Though not always)
MCAS: the most recently discovered and least well understood mast cell disorder. Mast Cell Activation Syndrome was accepted by the World Health Organization in 2007. They have not, as yet, have an official diagnostic criteria. This leads to challenges in getting diagnosed. The most informed places are research hospitals and clinics. Most doctors and even allergists, have not yet heard much about it. It is commonly comorbid with other conditions like Ehlers-danlos Syndrome, POTS, eosinophilic disorders, and seems to be often a secondary condition as it's not often found alone.
Treatment for mast cell disorders revolves around suppressing the symptoms. Epinephrine for anaphylaxis, antihistamines (both H1 and H2 types), leukotrine inhibitors, mast cell stabilizers etc. Many of us mast cell patients are on high doses of the antihistamines. I'm personally on 4 Zyrtec per day. 2 pills in the morning, 2 at night. (Along with all the others, not explaining my full regimen, just that we often need excessive amounts if antihistamines). For this reason, among
nanyothers, it's ill advised to attempt to self medicate with Zantac and Zyrtec (H2 and h1 inhibitors respectively) as you might need high doses and need to know what's safe for your body weight. Treatment also involves limiting as many of your triggers as possible. The treatment won't stop degranulation, just makes it more tolerable and less severe. At least that has been my own experience. It also minimizes the daily minor level symptoms. I feel a lot better than I did last year, but I've still had 2 degranulation episodes this year. They were my most mild yet.
This post will be spell checked tomorrow. I typed it on my phone, and autocorrect probably garbled done of it. Will likely add more info then too.