Please take a look at this newly published peer-reviewed article by Dr. Lawrence Afrin of which I was a co-author, on the revised criteria for the diagnosis of mast cell activation syndrome (MCAS):
Diagnosis of mast cell activation syndrome: a global “consensus-2”
One of the most common difficulties patients seem to face after they have been to our clinic and given a diagnosis of mast cell activation syndrome is when they return to their GP’s or specialists with a description of this syndrome. Traditional medicine is well-schooled in the diagnosis of systemic mastocytosis, a condition characterized by an increased number of mast cells as opposed to MCAS which is a diagnosis arrived at due to the increased activity of mast cells (and not an increase in the actual numbers).
Systemic mastocytosis is most often diagnosed by using a biomarker called tryptase, whereas the diagnosis of MCAS has much broader diagnostic criteria as this article will outline.
For a much more in-depth description of MCAS, please see my treatment page and the following articles:
- Treating Mast Cell Activation Syndrome (MCAS)
- Mast Cell Activation Syndrome: When You Immune System Runs Rampant
- Natural Treatments For Mast Cell Activation Syndrome
- Your Ultimate Guide to the Low-Histamine Diet
Dr. Bruce Hoffman, MSc, MBChB, FAARM, IFMCP is a Calgary-based Integrative and Functional medicine practitioner. He is the medical director at the Hoffman Centre for Integrative Medicine and The Brain Centre of Alberta specializing in complex medical conditions. He was born in South Africa and obtained his medical degree from the University of Cape Town. He is a certified Functional Medicine Practitioner (IFM), is board certified with a fellowship in anti-aging (hormones) and regenerative medicine (A4M), a certified Shoemaker Mold Treatment Protocol Practitioner (CIRS) and ILADS trained in the treatment of Lyme disease and co-infections. He is the co-author of a recent paper published by Dr. Afrin’s group: Diagnosis of mast cell activation syndrome: a global “consensus-2”. Read more about Dr. Bruce Hoffman.
None of my Dr.s have knowledge of MCAS and the Dr. Who diagnosed me I can no longer see. My tryptase averages from 22 to 28 for the last 3 years and it’s been taken a lot. I only had one bone marrow biopsy which was negative mastocytosis and my genetic testing came back that I have Heriditary Alpha Tryptasemia Syndrome but I can’t get anyone to help me who I could afford. I have great health benefits bad sadly No functional medical Dr.s accept it. Please help where I could be helped.
If you are in the USA, please reach out to either Dr Afrin or Dr Dempsey based out of New York. They may know of someone who can help. As of now there is no directory of doctors in our group but I do know that your condition is often discussed amongst the various physicians.
Pyrrole disorder can be a contributing underlying issue with MCAS. Check out Trudy Scott’s web site and Dietrich Klinghart. Also an issue with difficulty healing from Lyme
Yes, thanks Gail. I am aware of KPU and have been diagnosing and treating it for 15 years. The autism community were the ones bringing it to everyone’s attention back in the early 2000’s. Please see my reposted blog of Dr. Klinghardt’s on my website detailing KPU.
I only wish you were in south Florida or NYC. Had allergy tests taken at Cleveland Clinic , Weston, Fla. And told that I Definitely did not have Histamine intolerance. After that, I went back to my old ways of eating. (Clean but high histamine). Ended up in an Urgent Care Center with hives…head to toe ..and am now on Prednisone, etc. When I return to NY, I will contact Dr. A or Dr. D.
It is always challenging to find the right doctor to help discover the solutions to the situations we’re faced with, we hope you can consult someone you feel will be just as informative as we can be with our posts!
I’m a 45 year old Mom of an Autistic son. Since I gave birth 5 years ago, unforeseen C Section I have basically fallen apart physically and mentally these whole 5 years.
I appear to have Lyme, Mold, MCAS according to all my symptoms. I have state appointed insurance since my son was born. Zero help to me. I can’t find any doctor to do any tests on me to help me get to any root cause of my illnesses and continued weaknesses.
I’m desperate to find a Functional Doctor who can at least run the appropriate tests to rule out or help diagnose anything at this point.
What does someone ask for to a Western Doctor for testing? I need to tell them how to do their job so I can maybe advocate for myself at ruling out or helping come to an actual diagnosis?
Your reading is absolutely out of this world to me.
Your a God send of information that makes me feel like there is hope ahead of this train tunnel I’m in.
I have a lot of work to do and just don’t know where to start.
Thank you for your time ????????
Do you have a office in the USA?
We do not but I do encourage contacting the office to see how we can be of assistance remotely: https://hoffmancentre.com/contact-us/
This brilliant article, “Diagnosis of mast cell activation syndrome: a global “consensus-2” by practitioners that actually “recognize” MACS and empathize through the human beings they have treated, is so appreciate by those of us who have been on this incredibly lonely journey. I applaud you Dr. Hoffman as well as Dr. Afrin as literal lifesavers of information and more importantly…hero’s of advocacy for patients who are desperately trying to find answers on a path to find “just a normal life.” Please don’t give up on this struggle. Indeed, information and advocacy is everything. As you are challenged and questioned and dismissed by established by some in the established medical community, remember that there are many of us who are cheering you on. Mainstream medicine is so often determined to stay in one lane. But for those of us who know the complex and exhausting road of MACS—there isn’t one lane. The symptoms and daily reminders of MACS have few, clear directions but you and colleagues are trying to navigate and I thank you.
Please don’t stop advocating (militantly) for us. 🙂
Godspeed
What is the best test for mast cell disorder?
I have a blog with a list of labs that help diagnosis MCAS. You can read it here.