Mast Cell Activation Syndrome:
This article is both a personal story of a chronic health situation that I’ve been able to heal through food and lifestyle choices, and a story of the mismatch between how our immune system has evolved to function over countless eons and the very real challenges it faces in today’s day and age.
Immune dysregulation is an epidemic that is only beginning to come to light. I believe it will get much more attention over the coming years, and deservedly so. The ongoing COVID-19 pandemic has brought many things to the forefront of our awareness, one of the most obvious being that it is past time to look more deeply into our immune function, especially as it relates to pathogens and environmental pollutants, stress, poor diets and the other ills of our modern society.
When the immune system becomes dysregulated or hypervigilant it begins to display a pathological loss of tolerance.
While I have not had COVID-19, I have struggled with a pretty serious case of immune dysregulation, which started in the fall of 2018, and which has many factors that I think will be of interest to this readership.
I’d like to tell this story as part of this collective of articles on Food as Medicine because it’s a story of remarkable healing through appropriate dietary and lifestyle changes, from a condition which I thought was going to kill me at various points in the past year and a half.
My story is also connected to an early-life diagnosis with Lyme Disease and the way in which this disease causes immune dysregulation, apparently, for some of us, for life.
Additionally, the foods and natural supplements for the condition I realized I had which help to support the immune system to normalize from its dysregulated state are the same things that can be supportive in protecting against the symptoms connected to COVID-19!!
Finally, my story is a great example of the truth of bio-individuality, a really important concept when we discuss food as medicine: i,e, we need to listen deeply to our intuition and inner knowing about what foods/lifestyle choice and activities work for us.
In the worst of the times, as my health was declining and I was searching for answers, which was much of 2019, I resolved to myself many times that once I figured out what was going on for me I would share it, in the hopes that my discovery might help others who struggle with unresolved chronic health issues, which don’t seem to be helped by much of anything, even by eating really clean and healthy foods and avoiding the common food allergens/toxic foods.
Luckily this aspiration I have had is now coming to fruition, as I’ve successfully peeled back the layers of a health condition that has its roots in both genetics and environment, but I would say is most linked to the many and increasing physiological stressors present in our increasingly toxic world.
Please note that as I am not a doctor, none of what I share in this article is intended to be medical advice or be a substitute for professional medical counsel, treatment or diagnosis. Please always consult with a health care professional when it comes to treatment options for any condition.
People like me, who are the “canaries in the coal mine” of modern day society often express health conditions before others do in response to changes in environment.
‘Like a canary in a coal mine’ is, according to Wiktionary: An allusion to caged canaries (birds) that miners would carry down into the mine tunnels with them. If dangerous gases such as carbon monoxide collected in the mine, the gases would kill the canary before killing the miners, thus providing a warning to exit the tunnels immediately.
And so, this allusion means: “Something whose sensitivity to adverse conditions makes it a useful early indicator of such conditions; something which warns of the coming of greater danger or trouble by a deterioration in its health or welfare.” – Wiktionary
Chemical sensitivity is one of the many symptoms of this condition.
And as I have discovered in my research, hyper-sensitivity to fresh paint, perfumes, scented candles, diesel exhaust, and other VOCs is a sure-fire indicator of this condition I have found myself dealing with.
Sensitivity to mold is another.
Reacting poorly to extremes of heat and cold is another, as is an inability to handle much exertion/exercise without turning red, flushing and feeling unwell after exercise.
In my home we have a “canary test” for any cleaning products, personal care products, etc brought into the home. If I sniff a cleaning product and pretend to keel over and die, it’s a no/no.
Many people who have this condition are the ones who’ve been told by their doctors, “It’s all in your head”, as their doctors have not been able to get to the root of the many symptoms presented to them, and have instead given up on their patients and sent them home without answers.
I work with these sorts of clients, and I must say that while I wouldn’t wish the last year and a half of challenging symptoms on anyone, I am so glad to know that a pathway of healing is possible, as I have resolved the vast range of symptoms that I had; symptoms which are becoming increasingly common for many, and which I think will only become more well understood and diagnosed in the years to come.
So what is this condition I’ve found myself learning about in the most personal of ways this past year and a half?
It’s called Mast Cell Activation Syndrome, with a related condition of Histamine Intolerance
Mast Cell Activation Syndrome or MCAS involves a heightened response in the immune system, specifically in the mast cells of the immune system. When triggered by a wide range of irritants, mast cells will release various chemical components including histamine in reaction to something as simple as a small whiff of fragrance, exposure to mold, certain medications or any of the other many triggers listed below.
What then sets off in one’s body is a host of symptoms ranging from headaches to nausea, to vomiting, to anxiety, to full body pain, to coughing and wheezing, to skin rashes/flushing, to depression (and much more, the most severe symptom being anaphylaxis).
All of these symptoms have the same cause: An increase of histamine (and other chemical components) released by the mast cells of the immune system which are reacting to the irritant by sending out a cascade of chemicals into the tissues of the body as if the irritant was a virus or bacteria or other pathogen that needed to be immediately killed.
Basically, the mast cells over-react and then one feels a range of symptoms due to this over-reaction. What can happen for a person with MCAS is that there are virtually constant triggers of this release of histamine, because there are so many things that cause this release, and one ends up in a state of fairly constant inflammation.
Because the range of symptoms is so varied and seemingly unrelated, and can affect every major organ system of the body (because mast cells live all over the body) it can be very hard to understand what’s going on and is also difficult to diagnose.
“Some experts believe as many as 14 to 17 percent of the US population have MCAS, which is one out of every six to seven people. It’s also been estimated to take up to 10 years to reach a MCAS diagnosis. This is mostly due to the lack of awareness surrounding MCAS.” – Dr Bruce Hoffman
My symptoms have included:
– menstrual irregularities including extended periods of heavy menstrual flow
– long bouts of coughing and wheezing with my lungs filling with fluid
– chronic migraines
– full body pain
– joint pain in all the joints of my body
– digestive distress
– anxiety – seemingly appearing out of nowhere with no obvious trigger
– depression – happening quickly with no obvious trigger
– low energy (unrelenting fatigue is a very common symptom)
– skin rashes, rosacea and heat sensitivity
– cold sensitivity
– inability to handle exercise (i.e. exercise triggered worsening of symptoms)
– hair loss
– memory loss, inability to think clearly, difficulty with word retrieval
Throughout this past year and a half I have had very cyclical yet hard to track episodes of symptoms worsening and then getting better. Symptom cycling is another very common occurrence with MCAS and has to do with the range of triggers and also the histamine intolerance and the way that food plays a significant role with the expression of symptoms (more about that below).
Today, while writing this, I feel well and have felt well fairly consistently, with small bouts of recurrence of some symptoms, for the last three months. Symptoms worsen around my menstrual cycle because of the inflammatory nature of that process…and so I have to be extra careful with diet and stress management during that time. Consistency with what I am doing for myself with my diet, supplements, and lifestyle changes over the last 7 months has made all the difference.
In addition to what I’ve shared about my symptoms of this condition, Dr Hoffman shares a few more of the: Most Common General Symptoms:
“I’ve been sick for as long as I can remember”
“I overreact to bee stings, mosquito bites, penicillin and most medications”
“I can’t take a full breath”
Tinnitus/ringing in the ears from a young age
Vomiting as an infant
Dermatographism-a red line appearing on the skin when scratched with a blunt object
Frequent infections, cold, viruses, gut viruses as an infant, adolescent or adult
Edema-”water” accumulation in different parts of body
Food, drug, and chemical intolerances (especially fragrances). This is a very common symptom which may be exacerbated by phase 1 and phase II liver detoxification problems as identified by gene testing
Sense of being cold all the time
Decreased wound healing
Hypersensitivity to much in environment, including medications
Weight gain or loss
Frequent family history of cancer, especially intestinal or bone marrow (hematologic)
Generally feeling inflamed
Generalized lymphadenopathy (enlarged lymph nodes)
For those who are visual learners, below is a great visual from Dr Becky Campbell’s website, showing a few of the more common symptoms of MCAS.
For folks with this condition, often only some of these reactions will be present. Sometimes many or all will express.
I am still not sure what triggered the onset of this condition for me, though most likely it was stress, albeit “good stress”, resulting from a very packed international teaching and travel schedule in 2018, combined with a lot of travel in the previous couple years.
But this condition has a genetic component as well. The relatively common gene mutation known as MTHFR can make one more susceptible to developing MCAS.
And Lyme Disease is another factor as I also found out in my research. According to some doctors, a significant subset of Lyme Disease patients develop MCAS. Many people who’ve had Lyme end up never feeling fully well again in their lives. I had Lyme Disease when I was 10. My mom has said my health and vitality was never the same after that. Now I know why. Seems I’ve likely had MCAS to some extent, though mostly it’s been relatively mild, for perhaps the last 30 years, or maybe, like many with it, since birth.
In general it seems to worsen or become more obvious after age 40 or so, and seems to be slightly more common in women, though it can affect anyone of any gender and any age.
For me, chronic migraines (a very common symptom of MCAS) started at age 13, and I’ve never been able to get to the bottom of them, though now I am very hopeful and am seeing much progress in this area as well as every other areas of my health in the last couple months.
Many of the other symptoms of MCAS I’ve only struggled with in times of acute stress, which makes sense, because stress (specifically through the activation of corticotropin hormone) is a major trigger for MCAS.
Stress directly activates mast cells, causing them to release histamine and other chemical messengers. Adrenal stress/fatigue, a more recently named condition that has been linked, like MCAS, to lifestyle and environment triggers, has many of the same symptoms as MCAS.
I’ve become so aware of what a trigger stress is for the symptoms, that I’ve had to let go of a lot of commitments and really slow down in many ways this last year and a half in order to heal. Stress was literally killing me…
Also, looking back I can see now that it’s the times I’ve had mold exposure that have always triggered symptoms such as the ones listed above. If you have a strong sensitivity to mold you might want to look into MCAS.
Food can heal. Food can harm. With treatment of MCAS, food choices are really important, and the recommendations below may not be what you would expect!
Histamine Intolerance: How Food Plays A Role
Another very important part of the equation for this condition is something called histamine intolerance. The reason MCAS can be so difficult to diagnose is that one of the challenges folks with MCAS end up experiencing is that they become sensitive to any foods high in histamine, as well as foods that block the enzyme in the gut (DAO) that helps to break down dietary histamine.
Histamine is in many foods, and is actually found in some of the healthiest foods we might consider eating like spinach, fermented veggies (sauerkraut, kimchi, etc.), kefir, strawberries, peas, tomatoes and citrus fruits.
Being pretty health conscious and eating pretty well most of the time, I‘ve always fairly consistently eaten many of the healthy foods listed below, thus being unable to get off the merry-go-round of symptom cycling.
Below is one complete list of food to avoid if you are Histamine Intolerant.
Please note that treatment involves avoiding these foods for a period of time, but as the body heals, many of these foods can be brought back into the diet, as I am now starting to do after about 7 months of cutting these foods out of my diet.
Histamine intolerance is not a food allergy. It’s simply the inability to break down histamine in the gut. Because it’s not a food allergy, oftentimes testing for food allergies will not provide any helpful information, even though one is reacting to foods…just not in a way that can be picked up by food allergy testing!
Because folks with MCAS often have gut health imbalances due to the chronic inflammatory nature of the condition, over time one’s ability to break down histamine can lessen or disappear completely. Also, NSAIDs, some antibiotics and other medications can directly inhibit the DAO enzyme. This means that someone taking NSAIDS over time might start having reactions to high histamine foods, because the NSAIDS had been slowly destroying the body’s ability to break down histamine through damaging the gut and the bacteria that help to create DAO in the gut. It’s a vicious cycle, and can be hard to get off of without an act of Grace.
I am hoping that by writing this article today and by sharing this with you all, that this information might be the Grace that you’ve been waiting to experience, or that perhaps in sharing this information with a friend or family member whom you know has some of the symptoms above, that this might be the answer that they’ve been waiting for.
The odds are that 15% of you reading this have MCAS and possibly the related condition of histamine intolerance, and could benefit greatly from lifestyle changes, dietary changes and appropriate supplementation.
Because, now it’s time for the Good News!
While MCAS may not be something that is seen to ever be curable, it is something that can be lived with and managed and one can find that they can live a perfectly healthy, happy and normal life with perhaps just a certain amount of extra care and consideration in certain areas of one’s life.
I started treating my MCAS and histamine intolerance in early February of this year, after (through an act of Grace) a colleague and fellow health practitioner shared with me that she suspected this is what I had going on. The symptoms matched, so I started my research.
A combination of careful adherence to a low histamine diet, appropriate supplementation with certain vitamins that are mast cell stabilizers (i.e keep the mast cells in my immune system from going into overdrive mode and reacting to everything), and ridding myself of any and all sources of stress, seems to have done the trick! I am now able to eat a normal diet, and am finding myself much less sensitive to some of the more common triggers of MCAS like extremes of heat and cold, sun and insect bites. Sensitivity to perfumes, diesel, paint, and mold remains at a high level.
For a little more on this condition, below are some common conditions that may have MCAS as a factor in the expression of the condition/illness.
As you will see, there are MANY common dis-eases on this list!
So please keep reading…
This list also come from Dr, Hoffman, and the full article can be found here (https://hoffmancentre.com/mast-cell-activation-syndrome-histamine-immune-system-runs-rampant/)
Conditions Associated with Mast Cell Activation Syndrome
Because MCAS is a chronic, multisystem, multisymptom condition with an inflammatory theme, it’s been associated with a number of conditions and diseases, including (this is not an exhaustive list)
Irritable bowel syndrome and gut dysbiosis
Asthma and allergies
Autoimmune diseases (such as lupus, rheumatoid arthritis, and Hashimoto‘s)
Skin conditions such as eczema and psoriasis
Food intolerances and allergies
Gastroesophageal reflux (GERD)
Infertility and endometriosis
Chemical and medication sensitivities
Postural orthostatic hypotension (POTS)
“In general, inflammation accompanies MCAS and most of its coinciding or associated illnesses. If you are struggling to get one of these illnesses under control, there’s a possibility MCAS could be causing further complications.
It’s a good idea to check for MCAS if you have any of the above conditions and vice versa.”
Whew! That’s a lot. I know. It’s taken me the last 7 months to start to digest this material myself! For further reading, I recommend several websites below. Many of these are doctors or health practitioners that have struggled with and subsequently “healed” MCAS and histamine intolerance in themselves!
Please note that because of the varying nature of symptoms and the lack of full consensus in the medical community on which foods are high in histamine, you will find conflicting information listed on various websites. It’s really helpful to work with a qualified health care practitioner who can help to guide you step by step with appropriate treatments. Each person is different in their expression of symptoms, and their pathway to healing will look different.
A few of the nutrients that I have found invaluable for me are luckily the same things that are super supportive of a heathy immune system AND are great for stress reduction. Please don’t start taking supplements without consulting with a health care practitioner, especially if you are taking medications, as there are sometimes contraindications.
Some of the nutrients you will want to focus on increasing in your diet (and/or consider supplementing with with appropriate medical guidance) for MCAS include:
Liver supportive herbs and nutrients
In addition its incredibly important to be taking the correct probiotic. Some beneficial bacteria CREATE histamine in the gut. For a normal healthy person who can break down histamine, that’s not a problem! For someone who has an inability or lessened ability to break down histamine, it becomes a big problem. Seeking Health, created by Dr Ben Lynch, who suffered with MCAS himself for 35 years before diagnosis, has created some wonderful probiotic formulas for folks with MCAS/Histamine Intolerance.
Check out Dr. Ben Lynch’s website here: (https://www.seekinghealth.com) If you want to go the route of genetic testing, which can be very supportive for a clear diagnosis, I would recommend working with him in this arena as well.
Dr. Becky Campbell is another MCAS sufferer who was able to “heal” her condition after changing her diet and getting the right nutritional support. She also healed herself from a low thyroid condition, which is very linked to MCAS/Histamine Intolerance. She also helped me put the dots together around Interstitial Cystitis, which is a condition of inflammation in the bladder which causes pain and discomfort for many. IC is caused by mast cells releasing histamine. She has written a very simple and easy to follow guidebook and cookbook to support the healing of MCAS and histamine intolerance. Her focus is more Paleo, and so her book, with 50 recipes in it, is an invaluable resource, especially if you are keen on a paleo-type diet. More about her approach to healing this condition here: (https://drbeckycampbell.com/mast-cell-disorder/)
One of the earlier researchers of this condition is someone named Yasmina Ykelenstam. She suffered with MCAS/Histamine Intolerance for 20 years before getting a diagnosis, and then made it her life mission to help others with the condition. Sadly she died a couple years ago from cancer, which is more common with MCAS sufferers, and is another one of the reasons I feel so compelled to share this information in this article. Her website is full of great resources and she has a cookbook that you can purchase that is more vegetarian-friendly, if that’s a dietary approach you follow. Check out the extraordinary wealth and depth of her research and info here (https://healinghistamine.com)
Dr Hoffman, at the Hoffman Centre for Integrative Medicine is another wealth of resources and information about MCAS and histamine intolerance and is definitely on the leading edge of research into this condition. He shares about both the medicalized/medication route to take with treatment as well as the dietary/supplement route. You can access his resources here (https://hoffmancentre.com/treatments/mcas/).
I’ll leave you here with these websites of trusted practitioners, and my strong recommendation to do further research if anything in this article set off some lightbulbs for you in re: to health challenges you may have.
The good news is, this is not only treatable, but, as I mentioned, there are many who have recovered fully from this, and are living normal healthy lives again (some of them the doctors mentioned above).
I am well on my way to full recovery myself, and am thanking all the many factors that came together to allow for the Grace to descend into my life so that I can be sharing this success story in the making with you right now.
I hope that this article may have both inspired in you a renewed faith in the power of food as medicine, perhaps made you curious about which foods are YOUR medicine, and if you or someone you know has been struggling with a chronic unresolved health condition, that this article may have some answers. Let’s keep nourishing ourselves with the foods that heal, so we can live our lives as fully and joyfully as possible in this world!
Certified Health Coach, with additional certifications in Functional Nutrition