How I Healed MCAS

I was diagnosed with mast cell activation syndrome in 2016 and I am now 95% symptom free from MCAS and histamine intolerance. It took me two full years of 100% dedication to my health to do. I also know my healing journey will continue on into the future but I can happily say that I feel healthier than ever and I’m living a better, happier life than I ever thought possible, even before I got seriously ill. This is my story and how I went about healing.

Quick disclaimer that I am not providing medical advice! This is just my personal story to share what worked for me and to prove that healing from supposedly incurable chronic disease is ABSOLUTELY possible!!!

My history and how western civilization and medicine destroyed my health:

My immune system and gut biome was likely compromised from birth, for unknown reasons. I likely have a genetic predisposition towards histamine related disorders because my father also has a lot of allergy and other histamine disregulation symptoms. I also believe it is possible that I was harmed by vaccines as an infant. And of course there are a host of other unknown factors that could have contributed to my susceptibility to chronic disease.

I developed skin issues (“excema” and possible viral rashes) and food allergies as a very young child. I also had jaundice as an infant and ear infections as a toddler, which I had to be on a month long course of antibiotics for, further compromising the diversity of my gut bacteria.

Growing from infancy into childhood, my food allergy list continued to slowly expand. Every few years I would start to become allergic to another food. I also would have strange mystery “24 hour illnesses” where my body would get a high fever for 24 hours and then be fine.

As puberty hit, I developed severe anxiety and obsessive/compulsive tendencies. I started getting intense carb and sugar cravings, and would feel nauseous and get headaches if I didnt eat every few hours. I had an appendicitis at age 13, giving me a massive dose of antibiotics and body trauma. I went on the birth control pill at age 14 which likely began a serious disruption my endocrine system. I began getting recurrent throat and sinus infections that year as well. Each time they gave me a dose of antibiotics. Finally, at age 15, they removed my tonsils to prevent further infections, giving me another major dose of antibiotics and further body trauma. I stopped getting these recurrent throat infections but it did not address the deeper issues.

I continued to experience severe food allergies and anxiety into young adulthood. In my early 20’s, I started getting recurrent vaginal yeast and bacterial infections. Every time they put me on an anti fungal or anti biotic. But they kept coming back. I eventually got a staph infection in my vagina. I asked why this was happening to me. They could not explain it. They only gave me more antibiotics. I also started developing extremely painful periods- so painful I would often throw up from how intense the pain of it was. I finally decided to go off the birth control pill and see if that helped. It did help! I stopped getting as many vaginal infections, although I still often felt imbalance and discomfort, especially during sex. As an alternate form of birth control, I decided to get my tubes tied. This gave me another massive dose of antibiotics and further body trauma, and probably caused long term hormone disregulation, although I was never warned of that potential.

It was about the age of 25 that things started getting more acute. I got shingles what felt like out of nowhere. I also started having allergic reactions to foods that I was supposedly not allergic to. It would only happen once every couple months and I mostly ignored it as an anomalous thing since I could not explain it.

At 26 I started feeling increasingly anxious. I had always had constant low grade anxiety but it started getting more intense. This eventually developed into full blown panic attacks that I had never had before. It started happening almost daily. I felt like I was losing touch with reality and asked my therapist if I might be becoming psychotic. My list of unexplainable symptoms kept growing and no one could give me explanations. I felt crazy.

Developing mast cell activation syndrome:

At its worst, by the fall of my 26th year, my list of symptoms was as follows:

Hives

Swollen/red/blotchy/sensitive skin

Acne

Painful menstruation

Amenorrhea

Hot flashes

Congestion/stuffy nose/sneezing

Recurrent infections

Itchy eyes

Migraines/headaches

Chemical/fragrance sensitivity

Shortness of breath/air thirst

Anxiety/panic attacks

Emotionally overwhelmed/easily stressed

Overwhelming sense of doom or dread

Recurrent feelings that I was dying

Constipation

Bloating

Acid reflux

Food allergies

Histamine intolerance

Brain fog

Hypoglycemia

Dizzy/lightheaded/low blood pressure

Fatigue

Muscle weakness

Insomnia

Swollen lips

Mucusy/tight throat after eating

Tinnitus

Tachycardia and heart palpitations

These all came on so slowly and gradually that before I knew it I was in a constant state of terror, having multiple of these unexplainable symptoms every day. It was like the proverbial frog in a pot of slowly heating water.

Desperate, I found an allergy doctor and explained my symptoms. She said she believed that I had Mast Cell Activation Disorder. She said there was really no treatment except to try to avoid triggers and use anti histamine medications daily, and that we could also try a medication called gastrocrom. She said I would likely have symptoms the rest of my life but sometimes she saw spontaneous remission. She could not explain how the disease process worked or why I would have developed it or what would make it go into remission.

I tried to figure out my triggers but I couldn’t. They seemed random to me. So I took Zyrtec, benadryl and ranitidine daily and then eventually the gastrocrom. They didn’t help. In fact, my symptoms continued to get worse.

My introduction to a new path

I was terrified at this point. I had just turned 27. At what I felt like a last ditch effort, I consulted with a local herbalist. I didn’t know anything about functional or alternative medicine and I thought it would probably be a fruitless meeting. I could not have been more wrong. She told me she thought I had “gut dysbiosis” which could explain why I developed this disease. She said she thought it was perfectly possible for me to manage and even heal it through diet changes and herbal medicine. She suggested I start with a low histamine diet, but admitted my problems were out of her scope of practice and suggested I find a naturopath and a nutritionist who specialized in autoimmune disease.

I called around until I found a naturopath who specialized in autoimmune disease. She recommended a nutritionist who specialized in reversing autoimmune and other chronic diseases as well. Ananda Steigler is my naturopath, Mary Ruddick is my nutritionist.

The journey begins

While I was on the waiting list to get in with my new providers, I started a low histamine diet on my own. I could not believe how much of an effect it had. By eliminating all high histamine foods, within a couple of weeks the intensity and frequency of my symptoms went down drastically. I no longer felt an intense sense of dread, I wasn’t getting as many skin issues, and I had fewer heart and respiratory symptoms. I still felt very sick and had a lot of symptoms, but this was a clear sign to me that I was on the right track. I decided at this point to also eliminate all drugs and alcohol use, gluten, sugar, refined vegetable oils, and processed foods. I ate low histamine gluten free grains, vegetables, fruits, meats and healthy fats only. Only whole foods, no packaged foods. I ate only pasture raised and grass fed meat, buying them on the day they were delivered to the store to reduce the histamine levels. I started freezing all my leftovers to reduce histamine accumulation. I stopped eating at restaurants entirely to avoid any accidental intake of inflammatory foods.

I also started detoxing my life in more ways than just food. I wanted to get rid of everything in my life that could be disrupting my endocrine system or compromising my immune system. I changed all my personal products, from make up to hygiene to cleaning. I looked on ewg.org to buy non toxic make up brands. I started using Vani products (an allergy safe personal hygiene brand) at first, and then as my sensitivities went down switched to very basic plant and lard based soaps with no extra fragrances, preservatives or other ingredients. I recommend looking up lists of common toxic chemicals in personal hygiene products and avoiding them. For cleaning I started using vinegar, salt, baking soda, washing soda, boric acid, and plain soap. This included for washing my clothes. Eventually I have added some pure essential oils in as well as my sensitivities have reduced.

I also tried many different herbs and supplements at this point to help heal my gut and reduce my histamine load, but I found that almost everything I tried made my symptoms flare up. I knew I had to heal my gut and reduce my histamines to stabilize before I could really start healing. But everything that was supposed to help seemed to make it worse.

Naturopathic Medicine

After that initial improvement I had very much plateaued. I was still in a really bad place when I finally got into see my naturopath. She did all sorts of tests on me. She tested my genome (using 23andme and strategene), my hormone levels, my thyroid (TSH, T4 free, T3 free, and reverse T3), CBC panel, lymphocytes, vitamin D, iron, etc. She found that my levels of pretty much everything were too low, except my lymphocyte levels were high! The conclusion: I have a suppressed immune system, poor nutrient absorption due to gut dysbiosis, and some type of chronic infection. Whatever the chronic infection was, she thought it was likely at the root of my mast cell activation.

Unfortunately, my body was still highly reactive and even herbal remedies for treating chronic infections were too much for how fragile I was. She suggested I consult with the nutritionist first and just start taking a basic regiment of vitamins, particularly a B complex (which I reacted to and had to switch to a “B minus” supplement at first), D, C, magnesium, trace minerals, and digestive enzymes. She also had me start taking SAM-E to address my COMT mutation, but other wise said my genes didn’t look too bad.

She also wanted me to start addressing lifestyle issues such as sleep and chronic stress. I’ve always had a keyed up nervous system related to a lot of stressful and traumatic life events and it was important to reset my nervous system as part of my healing practice. Meditation, a regular sleep schedule, saying no to any strenuous activities, taking a break from my intensive exercise routine, and other relaxation exercises such as TRE, regular mental health therapy and coloring became important parts of my daily life. Eventually as my fatigue improved a little and I started doing gentle yoga 4-5 days a week.

Nutritional Medicine

I had to do two things: seal the lining of my leaky gut, and flush out pathogenic bacteria to address the gut dysbiosis. I will be very clear about this: when healing severe illness with nutrition, you cannot “cheat”- it will set back all of your progress. This is not just like a generally healthy person adopting a healthier diet. Food is your medicine. If you are not 100% diligent, it will not provide you the same results.

My nutritionist suggested I start by reducing my grain intake and upping my vegetable, meat and fat intake. She also had me eliminate nightshades/lectins and reduce oxalates to help with inflammation and support my body processing out toxins. Eventually she wanted me to go off grains completely in order to accelerate gut healing, and seriously lower my intake of plant toxins, but it was important to detox from them slowly so not to shock my system. She also agreed that I likely had chronic infections in my gut causing my mast cell activation. These bad bacteria feed on the sugars in grains, fruits and starchy vegetables and I would need to stop eating them to flush them out. She also had me start juicing fennel, celery, cilantro, parsley, ginger, and thyme to help reduce my histamine levels and stabilize.

Detoxing off grains was brutal for me. Even though I did it slowly I still got extremely ill from it. I had extreme fatigue and muscle weakness for months and could barely walk. But I stuck with it, and eventually I started to stabilize.

At this point, I started eating all of my vegetables puréed with water and fats in soups. This was extra gentle on my gut to promote healing. I also started intermittent fasting to give my gut a bit of break so that it could spend more time repairing itself.

Naturopathic medicine continued

At this point it was the fall of my 27th year, about 9 months into my healing journey. I was taking my vitamins, off of grains, lectins, and lowered my oxalates, and just eating puréed veggies, pasture raised meats, and healthy fats. I still ate some fruit but had reduced my intake to one serving per day. I also started slowly introducing a Sporebiotic probiotic supplement. My gut had healed enough I was able to now take a full B complex without reacting to it.

My symptoms had definitely lessened and were not as frequent, but I was still very ill and having flare ups in addition to just feeling weak, icky and tired. I ended up doing a GI MAP test from Diagnostic Solutions Laboratory. The results were far worse than anything I imagined. I had multiple chronic bacterial and parasitic infections. My naturopath said I was stable enough now that we needed to start anti microbial herbs to treat these underlying infections. I took herbs for parasites, bacteria, and viruses on and off for a year. I also took acyclovir for awhile, the only pharmaceutical I was on during this process, because my lymphocyte levels would not go down and my naturopath wanted to try something more intense. I got rid of so many pathogens. On and off for years I detoxed these bugs. I also started detoxing practices more: doing saunas (my blood pressure issues had started to get somewhat better at this point and it felt safe), dry brushing, activated charcoal, epsom salt soaks and castor oil packs.

GAPS diet and year 2

I turned 28. I had been healing for a year. While I was doing the herbal treatments, my histamine intolerance had started lessening a little due to all the gut healing I had been doing. My nutritionist thought I was ready to start a low histamine version of the GAPS diet. I cut out all fruit and starchier veggies, and I didn’t add them back in until I was at the last stage of the protocol, and even then only still lower glycemic ones. I remained off lectins and lower oxalates for the whole protocol.

For a low histamine version of the GAPS diet I just ate all the parts of it that I could tolerate with my histamine issues and left out the rest. I focused mostly on just eating a lot of meat broth and pastured/grass fed or wild caught meat every day. It helped me improve so much!

This was also a BRUTAL detox however and I got much worse before I got better. I became incredibly ill for months. I could hardly walk, and I felt like a zombie because the brain fog, fatigue and depression got so bad. But I knew it was all the bad bacteria in my body dying off, so I stuck with it.

Suddenly, four months into the GAPS diet, something changed. I started gaining weight for the first time in over a year (I had become very thin at the onset of my acute illness), and felt like my energy was coming back. I started eating some nutrient dense, higher histamine foods like organ meats, avocado, mushrooms and eggs with no major problems. My nutritionist said I was finally growing enough of a healthy gut lining that I was absorbing nutrients better and not reacting to food as much.

Hitting a Wall

I had now been healing for over a year and a half and had made a lot of progress. My symptoms had significantly reduced by this point and I was starting to eat lots of medium and even high histamine foods without symptoms. Even when I did react to a new food at first I found that if I gently pushed my body by continuing to eat small amounts over time, eventually the reactions would subside. I also found that my seasonal allergies had completely disappeared! This was an unexpected side bonus to my healing journey.

But I felt like I had hit a wall. I was better- but still getting annoying intermittent flare ups of old symptoms and I was still struggling frequently with brain fog, fatigue, skin issues, etc.

At this point, my nutritionist and naturopath suggested I lower my vegetable intake enough to be solidly in ketosis at all times, while still on the GAPS diet, to see if we could boost my mitochondrial health (basically the energy efficiency of my cells). I reduced my vegetable intake and upped my meat and fat intake again.

We also decided to test for heavy metal toxicity since that was the only possible root cause we hadn’t addressed. I did a heavy metals urine challenge with Doctors Data lab.

It turned out, I had toxic levels of thallium and lead in my system. I started taking Prussian blue for the thallium, and began chelation therapy for the lead. Again, it was another brutal detox. IV chelation therapy put me into a huge flare up. I became extremely tired, depressed, and brain foggy again, with major painful skin symptoms. I passed the two year mark in my healing journey while still in this flare up.

I turned 29. One morning, about a month after finishing my chelation therapy, I woke up and just had a distinct inner sense that something was different. My head felt clear, I had energy, I felt light in my body, my skin cleared up, and I felt so happy and motivated and inspired. There was a distinct shift in my nutritional desires at well. Vegetables didn’t sound that good anymore, and I was constantly craving meat. So I switched to a mostly carnivore diet, while still eating small amounts of vegetables when I felt like it. Everything positive I had already started feeling suddenly was amplified by ten. I knew that I was better! All my last, lingering symptoms, mental and physical, were dissipating. I started exercising more intensively again, I started sleeping only 6-8 hours a night without fatigue, began a strength training routine. My appetite surged! I started “mostly” carnivore by eating up too 200g of protein a day. My body was voracious for the nutrients in meat and I gained some weight again as my body took it all in. My histamine intolerance was completely gone- I started eating high histamine foods without any reactions. My period finally came back that summer! A great sign of increased health.

I started power lifting. I travelled. I went on epic hikes. My energy was sky high!

Eventually my appetite evened out and I found an upper limit to a sustainable protein intake, about 110-120g a day. I lost the weight I had gained and found a healthy sustainable place.

Over the next year I started having symptoms of oxalate dumping. Occasional loose, sandy stools, or white crystals in my stools, some non mast cell related skin rashes, and cloudy urine. This was a piece of the puzzle I hadn’t even considered before. I learned more about oxalates and how they are often not processed well by people who have a compromised gut from antibiotic use. I continue to avoid high oxalate plant foods for the most part and every time I have a dumping episode I feel better and better afterwards.

I currently continue to eat meat based, focused on nutrient density and nose to tail style carnivore, but also eat low toxin plants here and there. I will eat some higher carb plant foods some days when I feel like I want it, including fruit and starchy veggies occasionally. I eat eggs, mushrooms, seaweed, garlic, onions, raw dairy, and sauerkraut regularly.

The concept of “healed” is complex. But the reality is, I don’t get symptoms hardly at all anymore, and I don’t really react to anything specific in the world anymore.

I will never go back to a conventional life or way of eating. I know too much now and health is my biggest priority.

I’m sure my journey will continue into the future and my healing will progress. But overall I feel amazing. My mental health has never been better. I feel motivated and inspired every day. My body feels incredible. I feel like a totally new person, born again.

So this is how I put my illness into remission. It was long, hard, diligent work, but absolutely possible. Healing from severe illness is possible but only if you prioritize it in your life and completely dedicate yourself to a new way of living.

Summary of the causes of my illness:

-possible vaccine injury as an infant and then again as a young adult

-chronic viral infection from young childhood

-frequent antibiotic and anti fungul use from toddler to young adulthood (probably 20+ doses in total)

-likely undiagnosed food intolerances through childhood

-artificial hormone toxicity from birth control pills

-toxicity from cleaning, personal hygiene, and beauty products

-high carb/sugar diet for most of my life

-chronic stress and overstimulation from societal, familial and self imposed expectations

-acute traumatic experiences as a teen and young adult

-use of alcohol and recreational drugs as a teen/young adult further compromising my immune system

-chronic untreated bacterial, fungal, and parasitic infections

-heavy metal toxicity from unknown sources

-oxalate build up/difficulty processing oxalates

Summary of my healing journey timeline:

Year 1:

-low histamine diet

-cut out gluten, processed vegetable oils, and sugar

-detoxed my hygiene, cleaning, and beauty products

-prioritized sleep schedule, nervous system relaxation and regulation activities

-addressed vitamin and deficiencies

-SAM-E for gene support

-cut out grains and lectins/nightshade vegetables and most oxalate heavy vegetables, switched to a vegetable, meat, fruit and fat based diet

-ate all my vegetables puréed with healthy fats, did intermittent fasting

Year 2:

-detoxing practices: sauna, dry brushing, castor oil packs, etc.

-herbs for bacterial infections: neem, monolaurin, berberine

-herbs for parasitic infections: wormwood and cloves

-herbs for viral infections: isatis, lomatium, licorice root, andrographis, acyclovir (pharmaceutical)

-herbs and supplements for heavy metal detox: cilantro, activated charcoal, allicin, IV chelation therapy (pharmaceutical), r-lipoic-acid , n-acetyl-cysteine

-herbs and supplements for immune system boosting: cordyceps, reishi, spiralina, Chlorella, whey protein isolate (only introduced these when histamine intolerance had significantly decreased)

-low histamine version of the GAPS diet to accelerate gut healing

-ketogenic version of the GAPS diet to increase mitrochondrial and metabolic health

Year 3:

-nose to tail, meat based keto diet to boost strength/energy

-eliminated high oxalate foods

-added fermented foods to continue building microbiome diversity

-started power lifting for increased metabolic and immune system strength.

Im in year 4 now! And the journey continues…

Losing Two Years

This is how I lost two years

I fast forwarded into now

This is how I lost you in those years

I lost us both inside myself.

I tried to explain: my brain is full. There is no room.

It was like living in a house with one room lit

Like sailing away into the fog

Like drifting down into the dust

Like disintegrating into ash.

I tried to explain: this is not who I am. This is not who I’ve always been.

Two years I lost.

They slipped away from me

Like holding onto melting snow.

I try to explain: for two years I wasn’t there.

Mind slow. I could not learn. I could not see.

The road washed away beneath my feet

The seasons changed around me.

This is how I lost two years

My head submerged in thick water and mud.