I belong to a few different mast-cell related support groups, which have been super helpful to me along the way. From reading posts there, it seems as though it’s far too common for people to end up in a scenario where they have symptoms of mast cell disease, but aren’t sure whether it’s mast cell activation syndrome, or another form of mast cell disorder such … Continue reading The test that ruled out mastocytosis
I was very lucky to receive a diagnosis of mast cell activation syndrome from my first doctor, Dr. R., because technically, I do not fit all of the criteria for an official diagnosis. The official criteria to receive a diagnosis actually include the following, as discussed in this article: Symptoms of mast cell activation: “patients with a presumptive diagnosis of “MCAS” must have two or more … Continue reading Why I got a diagnosis, even though I don’t fit all of criteria for mast cell activation
When I first developed symptoms of mast cell activation in the fall of 2018, I had no idea what was happening to me. I was already seeing an allergist for my environmental allergies at an outpatient practice here in Massachusetts. When my mast cell symptoms began, I started to experience some small reactions to food. My doctor ran blood tests to check for allergies to … Continue reading How I got diagnosed
Finding this video made a world of difference to me. I found it at a point when I wasn’t sure if anyone ever really got better from MCAS. Thank you so much, Savannah, for posting this and sharing your journey. I wanted to jot down a few notes about what she said because writing is, personally, how I process and internalize things. So I wanted to write this out, … Continue reading Heyo it’s Mayo– MCAS Series #4- 20 Steps to Healing
This is an absolutely amazing story from a man who became increasingly debilitated over the course of years, following infection with a viral illness. Jeff went to hell and back, getting progressively more ill over the years. He had Myalgic Encephalomyelitis (ME), POTS, MCAS, dysautonomia, as well as a host of other symptoms. Jeff tells his story on his site, MEchanical Basis. Eventually he discovered … Continue reading MEchanical Basis/Jeff’s Story
In this talk, Dr. Castells describes how the recommended therapeutic dose is 200 mg 4 times a day. However, the drug causes so many side effects (in the intestines is what she mentions) so they start with 100 mg once a day, and increase over the course of 8 weeks. Once they get up to the therapeutic level, there is a “profound inhibition of mast … Continue reading Dr. Castells on Sodium Cromolyn (Gastrocrom)
I found this question on the World Allergy Organization website, where it appears doctors can ask questions of other doctors. http://www.worldallergy.org/ask-the-expert/questions/mast-cell-activation Here’s a question I was wondering about, myself: Does mast cell activation and release occur in non-atopic food intolerance? What is the evidence, for and against? By Dr Mariana Castells There is indirect evidence through the measurement of mast cell mediators that GI mast … Continue reading Dr. Castells’ thought on food activating mast cells
This article explains a bit about their work at the hospital in general. An interesting tidbit: “Dr. Hamilton is exploring novel treatments for mast cell patients with persistent or refractory symptoms. The primary treatment for the symptoms of mast cell activation remains the blockade of the mast cell mediators with antihistamines, mast cell stabilizers, and prostaglandin and leukotriene inhibitors The regimen is maximized to therapeutic … Continue reading Case study from Brigham and Women’s: successful treatment of female patient with MCAS/GI symptoms
I’m really fortunate that I managed to get an appointment with Dr. Castells, a world-renowned expert on mast cell disease. I know that not everyone is so fortunate as to have someone like Dr. Castells practicing near them, so part of the purpose of my blog will be to pass on the things I learned from her. So: Here are the list of food triggers … Continue reading Dr. Castells’ dietary recommendations
Yasmina: How does stress, or our ability to successfully deal with it, impact our prognosis, or the intensity of symptoms we experience? Essentially, what’s our role in this this condition – are we really helpless bystanders at the mercy of our mast cells? Dr Castells: “I think really when the patient realises that, and in having a positive attitude about the disease, the impact is … Continue reading Dr. Castells interview with Yasmina, Part 2: Stress and Mast Cells
Mast Cell Healing 