MCAD Resources

Here’s a collection of useful and informative websites to drill down further on all forms of Mast Cell Activation Diseases (including both Mastocytosis and MCAS) known collectively as MCAD and food issues that so many of us experience in addition to Ehlers-Danlos Syndrome. Scroll down further for some of the best introductory articles for doctors:

There’s now an educational book available on MCAD from a leading US hematologist as of May 2016:

Never Bet Against Occam: Mast Cell Activation Disease and The Modern Epidemic of Chronic Illness and Medical Complexity Afrin, L. MD 2016 Elsevier Press

Good introductory info for all

I highly recommend reading these blog posts on diagnosing all forms of MCAD, which make it clear both how hard it is to get a distinct result, and how heterogeneous (widely varying) and hard to diagnose the conditions are for everybody:

Is it a zebra or what?

Anaphylaxis grading charts

Not all anphylaxis (ana) is throat-closing. Learn the early warning signs to help stave off a reaction that is:

These are just some sample charts below, google for more, there’s no single consensus, and everyone’s body reacts differently at different times to different triggers and conditions including to non-proteins like sunlight, pressure, and vibration. Some poorly known experience from the field:

Some people’s blood pressure (BP) may just suddenly drop hard and they begin having literal Stage IV cardiac issues that can kill them even without “traditional” hives and airway trouble at first, if at all. So they can be missed as having anaphylaxis because of the absence of throat or tongue swelling.

Others have their BP spike quite high, and either stay high, or also suddenly drop, sometimes quite far and hard, again, in a dangerous way. Talk to your doctors about yours and when to epi! Every. Body. Is. Literally. Different.

Important note December 2020 on reactions to new COVID-19 vaccines:

Anaphylactoid reactions” are essentially identical in effect to “allergic reactions” and the most common medically accepted forms of “anaphylaxis”. The different in terminology is merely a matter of hair-splitting around the drivers of the reactions – the latter is an older, very narrow definition based strictly on IgE-mediated “true” allergies, triggered by organic protein “allergens” they can test for.

The former (“anaphylactoid reactions”) is a now defunct term that used to described all other reactions of the same nature in the absence of a known IgE allergen. 

But they can kill you just the same! I.e, the “driver” doesn’t matter, the resulting anaphylaxis is the same – over-activation of mast cells and basophils leading to shock and potentially death for some.

Most people with any form of MCAD soon learn this is one of the MAIN REASONS TO SUSPECT MCAS or mastocytosis or HATS: the fact that you DO react to non-proteins, like sunlight, vibration, pressure, cold, heat, scents, etc.

I.e, Things you cannot test for IgE antibodies levels for at the allergy office~! Some never have any “true” IgE-mediated allergies, but have to literally live in safe trigger-free bubbles just the same.

This is precisely what makes diagnosing MCAS SO hard – the best they can do is try to capture evidence of elevated mast cell mediators in blood or urine “after the fact”, and this is notoriously inaccurate for many reasons.

People have been literally dying, and disbelieved because there was no easy bio-marker or sufficient elevation of one despite all the signs of anaphylaxis you could want. This really really needs to change and is always under discussion by TMS, AAAAI et al. Sadly, there is no global consensus. (2020)

Google for more and for any unfamiliar terms and talk to your doctors! Loss of airway is the biggest flag for most, but not all.

New COVID-19 related articles:

Guidelines for anaphylaxis (systemic shock) reactions:

Emergency protocol for Masto/MCAS patients via The Mastocytosis Society (TMSForACure):

 Caution: Patients on beta blockers may need glucagon WITH any shot of Epi. (Disregard if NOT on beta blockers).

(See TMS Emergency Protocol document above for more, including cautions re: anesthetics/surgery)

Emergency Protocol for Those With Severe Corn Allergy    Patreon support logo

Best Introductory Articles for Doctors 

Video: Mast Cell Activation Disease: Current Concepts with Particular Notes on Hypermobility and Chronic Pain – Lawrence Afrin, MD 2018 via EDS Wellness/Mast Cell Research
Video: Mast Cell Activation Syndrome webinar with Dr. Larry Afrin, US Hematologist via Chronic Pain Partners June 22, 2016 (since he published Never Bet Against Occam, book)
Video: Introduction to MCAD (June 2015) – Jan Groh for PNW TMS Chapter
Video: Allergies and Mast Cell Activation in EDS Patients Anne Maitland, MD 2014
Video: Mast Cell Activation Syndrome in EDS Patients (Part 2) Anne Maitland, MD 2016
Video: Mast Cell Disorders – free webinar by Dr. Theoharides via Chronic Pain Partners June 2, 2015
Video: My Mystery Symptoms and Mast Cells – featuring Dr. Theoharides and two patients in discussion 2015

HATS – Hereditary Alpha-Tryptasemia (new since 2016)

Video: Update from Josh Milner MD of the NIH on study of CTDs (like/including EDS)/MCAD/POTS aka “Familial Tryptasemia” – high tryptase level not required 2015 via Dysautonomia International. See articles below for study results published since October 2016:

Video: The Bulk of The Iceberg Revealed: Mast Cell Activation Syndrome Dr. L Afrin in South Africa Aug 2014 (slow to load and often buffers)
Podcast on Coffee Klatch: Dr Theoharides – Mast Cell Disorders – April 2015 – announcing connection between autism and MCDs

The Mastocytosis Society MCAD Symptomatology Video on Youtube (3 parts, 45 min total):

GI Issues and MCAD

Mast Cell Mediators

Mental Health and Mast Cell Activation Diseases (Masto and MCAS)

Migraines and Mast Cells

Enlightening Histamine Articles

The Interaction of Hormones and MCAD

Miscellaneous Links

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Or even just once here: 

Thank you so much!

Please notify me of any broken links, thanks! Jan ( Updated 12/03/20

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