Mast Cell Activation Syndrome; How I Approached Eating to Reduce Symptoms (the food lists), and a Re
A little over a year ago my integrative medicine/lyme disease doctor diagnosed me with mast cell activation syndrome, or MCAS. I had no idea what it was. I had seen the acronym MCAS in titles of online articles but I never read them, hoping to stay immune from another “disorder” or imbalance. On August 2, 2017 I went to bed as I typically do, and on August 3, 2017 I woke up with it.
Mast cells gone awry overnight! It's no walk in the park.
I was fortunate to be diagnosed so quickly based on symptoms and I was able to begin treating it in September 2017. For many people it takes years and years to get a proper diagnosis as all body systems can be affected and symptomatic, much like tick-borne infections, and patients are often sent to various specialists trying to get answers to their myriad of symptoms; western medicine often doesn’t look at the whole picture as integrative and functional medicine does. I also followed up with an immunologist at a large teaching hospital who has been helping me with mast cell activation since last fall as well; I am very fortunate to have an immunologist within several hours of me that is knowledgable about mast cell activation as many are not and traveling long distances is required. I remember leaving my first lengthy appointment with her, I stopped and picked up an organic salad and after a bite or two I tossed it because there was vinegar in the dressing (high in histamine). Within ten minutes I was barely able to drive home, my airway became constricted, my vision went blurry, I could barely stay awake and focused, I had chills, brain fog, a sense of doom, eyelid/facial swelling, itching, and tingling. Yikes!
So what is Mast Cell Activation Syndrome, or MCAS?
The Wikipedia definition of MCAS is this:
"Mast cell activation syndrome (MCAS) is one type of mast cell activation disorder (MCAD), and is an immunological condition in which mast cells inappropriately and excessively release chemical mediators, resulting in a range of chronic symptoms, sometimes including anaphylaxis or near-anaphylaxis attacks. Primary symptoms include cardiovascular, dermatological, gastrointestinal, neurological and respiratory problems.
Unlike mastocytosis, another type of MCAD, where patients have an abnormally increased number of mast cells, patients with MCAS have a normal number of mast cells that do not function properly and are defined as "hyperresponsive". MCAS is still a poorly understood condition and is a current topic of research.
MCAS is often found in patients with Ehlers–Danlos syndrome (EDS) and postural orthostatic tachycardia syndrome (POTS). It is also found in subset groups of patients with common variable immunodeficiency (CVID)."
I included Wikipedia's symptom list below if you are interested.
Why/How do people get this?
In my case, I deal with POTS, CVID, I had severe tick-borne infections for many years, another big trigger, so clearly a combination of issues. From what I have personally read of others experiences, it can occur from a surgery, an illness such as the flu, vaccines, after stem cell transplants, mold exposure, medications, chemical exposures, severe stress, gut imbalances, and more. Basically, the body gets overtaxed and mast cells malfunction, releasing mediators in excessive amounts. Anaphylaxis is a very common occurrence for many, being exposed to daylight can set off allergic reactions that take days or weeks to calm down. Oftentimes babies are born with it; unimaginable!
The first 6-8 months of dealing with this was brutal at times with severe reactions happening frequently. I was very glad to have the tools to keep myself mentally above water. Now, most days include some type of reaction from usually mild to sometimes moderate but overall I am much improved. I know what to do to stay fairly well and I can get myself back on track should reactions start kicking up again. I like to think that it keeps me on the healing path and taking care of myself.
You can get much better even though it seems hopeless at times!
Fortunately we humans are quite resilient.
Staying in the moment is severely underrated!
One of the top healing tools for MCAS, in addition to supplements and mast cell stabilizing drugs, is altering your diet because foods can be high in histamine, they can liberate your own histamine, or they can degrade your levels of diamine oxidase, an enzyme we all have that breaks down histamine in our bodies. I see many posts from people that are baffled with how to proceed in changing their diet. They are looking for the single most reliable food list that they can adopt immediately in its entirety. I deeply understand this! Most of the low histamine food lists out there are different though, some being extremely different. This is not reassuring when you are so desperately looking for relief. Eggs are okay on one list and not okay on another list. Or, only the whites are okay but they must be well cooked. Some nuts are not high in histamine but they liberate histamine from your body so they are still off the table, almonds are okay, all potatoes are bad, only sweet potatoes are bad. Many superfoods that are anti-inflammatory powerhouses are high in histamine; nonsensical from a health standpoint. When you are ill and willing to eat cardboard to feel better, playing around with the wrong foods and increasing symptoms is not how you want to proceed!
Here is what I did:
I perused various high histamine food lists online and when I found three comprehensive lists from holistic practitioners (lists from doctors offices tend to be fairly vague), I printed them out. Pencil in hand, I cross referenced the lists and any food that appeared on all three high histamine lists was a definite no-go, crossed off my eating repertoire. Any food that appeared on two lists was also a no-go, and a food that appeared on one list (yay) was a maybe for a later date. I did the reverse with foods on the low histamine lists; if a food was listed as low histamine on all three lists I was going to try it, a food listed as okay on just one list was not a food I was going to try for a while.
Not to complicate the issue but because we are all biologically different, there is a chance that the recommended low histamine foods could be problematic regardless, and some high histamine or histamine liberating foods might be okay for you.
With my food list on the kitchen counter I eliminated all foods accept for eggs, squash, and broccoli, salt, and coffee. I started with eggs for breakfast, eggs for lunch, eggs and broccoli for dinner. The next day, the same. My acute symptoms improved by the hour. The next day consisted of eggs, squash, broccoli, the next day I added in chicken. Several days later I added in another food, at the next meal, another. If I had worsening reactions I noted it and didn’t consume that food again.
I recommend this approach versus consuming a variety of low histamine foods all at once as you still won't know what is causing an uptick in reactions when they occur. Dialing what you eat back to just a few foods and letting your body calm down will allow you to eat a larger variety in time and taking it one food at a time indicates what does or doesn’t work for you as an individual which is key; its an elimination diet of sorts. In eliminating foods and adding them back in as tolerated, you learn what works best for you. I recommend using lists from holistic/functional/integrative practitioners because these lists are about anti-inflammatory foods, I remember seeing a list that had vanilla ice cream on the “okay to consume list”, this is pretty exciting when your dialing things back to this extent, but this is not a good list.
Today, a year later, I still consume a narrow array of foods based on last years elimination diet but I can eat small amounts of histamine foods here and there. If I need to be somewhere in top form/have plans, I eat as low histamine as possible in the prior few days to ensure I feel really good. If I’m at a restaurant and the salad I order has a few spinach leaves in it or a few walnuts on top, its okay, an entire spinach salad or a handful of nuts is not a good outcome. I do miss many of the healthy foods I used to consume every day for many years such as avocado, spinach, cinnamon and other spices, tomatoes, eggplant, dark stevia chocolate, salmon/all seafood, all nuts, obviously nut flour, nut milk, and more. As I said, some weeks I can get away with a few bites of some of these foods and I am okay with very mild reactions. Taking the enzyme diamine oxidase before eating is extremely helpful and allows me to eat at restaurants with minimal side effects. Phew!
My go-to foods are greens and vegetables, eggs, blueberries, black beans, garbanzo beans, chicken, turkey, brown rice, quinoa. Flax and chia seeds have been tolerable in small amounts lately, coconut milk, coconut, and coconut flour. At this point food is the biggest trigger for me and fortunately sticking with anti-inflammatory, low histamine foods is very helpful in keeping reactions on the milder side.
I will share other triggers that I avoid, symptoms that occur, along with what has helped me with MCAS in terms of supplements, medications, and other healing modalities, in a future post. Feel free to ask me questions.
You are not alone!
In the meantime, if you are dealing with MCAS and you are able to consume coconut, and I hope you can, I created this vanilla coconut flour cake which is grain, sugar, and dairy free, anti-inflammatory, and candida friendly.
Paleo Vanilla Cake
1/2 cup coconut flour
1 tsp vanilla
1/2 tsp baking soda
1/2 cup melted coconut oil
1/3 cup erythritol ( I use Swerve) xylitol, or monk fruit granular sweetener
1/3 cup coconut milk plus a few extra tablespoons if needed
A few drops of stevia if you like a sweeter taste
Optional add it: blueberries
Preheat oven to 350 degrees. Combine all ingredients and blend well to eliminate lumps. Pour into a greased 8 inch baking dish or greased 9 inch cake pan and bake for 30 minutes or until edges are light brown and its set in the middle. Enjoy!
MCAS is a condition that affects multiple systems, generally in an inflammatory manner.
• easy bruising
• either a reddish or a pale complexion
• burning feeling
• lightheadedness, dizziness, presyncope, syncope, arrhythmia, tachycardia
• diarrhea and/or constipation, cramping, intestinal discomfort
• nausea, vomiting
• swallowing difficulty, throat tightness
• Psychological & Neurological
• brain fog, short term memory dysfunction, difficulty with recalling words
• headaches, migraines
• co-morbid psychiatric and behavioral symptoms as a result of mast cell mediators being released in the brain (i.e.: anxiety, depression, mood swings, etc.)
• congestion, coughing, wheezing
• Nonallergic rhinitis with eosinophilia syndrome (NARES) 
• Obstructive Sleep Apnea
• ocular discomfort, conjunctivitis
• general fatigue and malaise
• food, drug, and chemical allergies or intolerances (especially fragrances)
• Cold and Heat Intolerance
• osteoporosis and osteopenia (including young patients)
• Anaphylaxis If too many mediators are split into a patient's system, they may also experience anaphylaxis, which primarily includes: difficulty breathing, itchy hives, flushing or pale skin, feeling of warmth, weak and rapid pulse, nausea, vomiting, diarrhea, dizziness and fainting.
Symptoms can be caused or worsened by triggers, which vary widely and are patient-specific. Common triggers include:
• specific foods and drinks (especially alcohol, high-histamine content foods, and histamine releasing additives such as sulfites)
• temperature extremes
• airborne smells including perfumes or smoke
• exercise or exertion
• emotional stress
• hormonal changes, particularly during adolescence, pregnancy and menstruation.