An Insider's Look At MAST Cell Activation Syndrome With Guest Dr. Jill Schofield

The Spoonie Struggle

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Episode 23: An Insider's Look At MAST Cell Activation Syndrome With Guest Dr. Jill Schofield

In this episode, Dr. Jill Schofield discusses MAST cell activation syndrome. MAST cells are used to fight off foreign invaders and are present in all areas of the body, but most in the GI tract, genitourinary tract, skin, and sinus system. When they go awry, it causes inflammatory effects. In MCAS, mast cells are inappropriately activated. MCAS can be primary or secondary (to development of autoimmune disease, exposure to mold, Lyme disease, or COVID). Symptoms often can start in very young children. There are two different consensus criteria, which are not agreed upon. Consensus one has a narrow definition and consensus 2 has a less narrow criteria.

Symptoms include feeling cold or hot water being poured on your leg when it isn’t, nausea, diarrhea, chest pain and tightness, anaphylaxis, heavy menstruation, pain, heartburn, eczema, allergies, exercise induced asthma, neuropsychiatric symptoms, depression, anxiety, headaches, rage episodes, flushing, itching, rashes, hives, environmental allergies, ovarian cysts, cysts in the body, fibroids, lypomas, polyps, wound healing issues, abdominal pain, GI symptoms, diarrhea, constipation, neausea, vomiting, skin issues, POTS, difficulty getting a deep breath, insomnia, hypersomnia, and IBS.

Triggers include extremes in temperature, changes in temperature, stress(physical or emotional), change in altitude or barometric pressure, chemicals in the environment, high histamines in food, physical pressure on the body, chemicals in food, mold, leftovers, chemicals in plastic, meats that use tryptase, elastace, and riper foods. People with MCAS tend to be very sensitive to numerous medications. Different triggers trigger different types of symptoms. Triggers seem to be additive to cause worse symptoms. Keep a food diary to see what your triggers are. MCAS causes multiple symptoms in multiple organs that don’t seem to make a lot of sense. MCAS symptoms can vary in severity and symptoms across people and within an individual. MCAS reactions are not allergies. This is an important distinction.

If you have a physician who doesn’t understand MCAS, tailor what you say to the knowledge base of that physician and be careful how you phrase things, in an effort to gain their understanding. To get a diagnosis, seek out an allergist of a gastroenterologist. The tests for MCAS are very poor and there are lots of ways it could go wrong, leading to lack of diagnosis. They are better for diagnosis mastocytosis. They tests are very insensitive and rarely do they come back positive. Serum prostaglandin d2, plasma histamine, chromogranin a are the best tests to run to yield a positive result. A lot of these tests are only available in the US and the UK. MAST cell count on endoscopy slides are also helpful.

Treatment includes Histamine 1 and 2 blockers, avoiding triggers, low histamine diet, chromalin, and antihistamines. Treatments for MCAS include recognizing a flare and treating it as soon as possible. Make sure you have a good POTS doctor and allergist.

Dr. Schofield also discussed and explained small fiber neuropathy, including what it is, how to assess it, and the problems with the current diagnostic system. MCAS is one cause of small fiber neuropathy. Treatment of MCAS can also potentially help minimize POTS symptoms.

POTS and MCAS have a huge overlap in symptoms, with a few exceptions. However, they may have different triggers. Treatment differs between the two conditions and if you figure out which is causing what symptoms, you can tailor the treatment for the flare of that specific condition. Response to treatment can help inform what is caused by POTS vs MCAS vs EDS. There seems to be a genetic link in MCAS, but this is not the case in everyone.

To educate yourself, get on MCAS forums and read a book about MCAS.

Center for Multisystem Disease

Research Paper

Global Consensus 2 Criteria

Never Bet Against Occam

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