How to get a Mast Cell Activation Syndrome diagnosis in Canada
I received my Mast Cell Activation Syndrome (MCAS) diagnosis after about a year of increasingly terrible symptoms.
NOTE; This is my experience and yours may differ. You should always consult your own healthcare professionals and do your research when seeking a diagnosis. This is what worked for me.
Why did I suspect MCAS?
While I was trying to manage my suspected SIBO I started eating meats only and strawberries to get me through the day. I would have bacon and shrimp and oven roasted strawberries for snacks. I started to get hives after strawberries and they started to get worse. I saw on the SIBO sub-Reddit that histamine intolerance was sometimes found in those who also had SIBO. I started tracking my food intake and symptoms and realized that foods high in histamines were triggering some reactions like fatigue, and itching. I started to have more severe symptoms and looked into a low histamine diet which led me to MCAS.
WHAT ARE THE SYMPTOMS THAT I TOOK TO MY GP?
I realized things were getting dicey when I started getting really confused and exhausted after eating certain foods. I started to get symptoms affecting multiple systems (which is anaphylaxis) depending on what I ate or exposure to certain triggers.
I experienced:
diahrrhea after eating at certain times of the day (sometimes lunch or dinner) that resembled dumping syndrome
brain fog
fatigue
confusion
anxiety
feeling of impending doom
shortness of breath/shallow breathing
difficulty breathing
itching
hives
Irritability
stomach cramps
depression
angioedema
etc…
I experienced these symptoms to varying degrees after hot showers, exercise, inhaling car exhaust. However, the worst flares come from histamine-rich foods.
What medications might help?
My GP prescribed an antihistamine called Rupall. It helped to keep my irritating symptoms at bay like my hives and itching at night but I still struggled with more sever symptoms. I had to get referred to an allergist since my GP wasn’t really explaining why I was the way I was.
NOTE: You will have to find medications that work for you as I found higher doses of Rupall and Blexten gave me reactions such as heart palpitations and dizziness.
The referral to an allergist
If you think that your GP is not helping you to get an answer and your symptoms aren’t improving, then ask for a referral to an allergist. I was fortunate enough to get a specialist who understood my symptoms.
When going to your allergist or any specialist, make sure that you have your notes, research, and symptoms documented. You need to be able to demonstrate that you suspect Mast Cell Activation Syndrome.
My allergist started me off on a higher dosage of Certirizine (Reactine in Canada). I take 20mg twice a day but if I am in a flare, I was advised to go up to 80mg.
My allergist tested me for general environmental triggers and nothing showed up. Typically with MCAS, you respond well to antihistamines, you don’t have typical allergies when tested, and your tryptase level during a flare is high but normal overall. My allergist diagnosed me with MCAS based on the first two criteria: I respond really well to antihistamines and I don’t show typical allergies.
I felt fortunate that I didn’t have to argue with this specialist to consider a sort of rare disease. They were aware of the disease and I didn’t have to whip out all of my research but I recommend having all your notes as they will ask your history and trends in your health.
What do I do to manage my MCAS?
I have a protocol that I follow now for best results. My allergist has advised me to keep going with my higher dosage of antihistamines as MCAS doesn’t really have a cure. You just manage it and hope that you can reduce your triggers and reintroduce different foods as you get better.
I take the following daily:
20mg of Certirizine twice a day (Antihistamine)
1000mg of Quercetin (Mast Cell Stabilizer)
1000mg of Vitamin C (Mast Cell Stabilizer)
Low histamine diet
Managing environmental triggers
An epipen in case of severe anaphylaxis
This protocol helps me to keep the worst of my flares at bay and with 3 months of Vitamin C and Quercetin, I don’t have as much of the dumping syndrome and can tolerate leftovers with much less symptoms.
What do you do if you have a serious reaction?
If you have trouble breathing that is getting worse. Go to the Emergency room. If you feel like you might pass out, go to the Emergency room. If you take a dose of your epipen, go to the emergency room. If you think you might need help, go to the Emergency room. They will stabilize you and make sure you have the right medication to treat your reaction.
