Managing MCAS

Managing MCAS

Remember, the information on my website, podcast, Instagram, and any other ways I communicate and/or produce content is educational information only and not medical advice. Always check with your qualified medical professional before making any changes to your treatment plan for endometriosis or any other health problems. See my full disclaimer here.

Managing this condition is individual

Some ways people manage are:

  • Using medications* like mast cell stabilizers, antihistamines (H1 and H2), and leuoktriene inhibitors. Some take baseline medications daily; others only take medications to rescue them from severe flares.
  • Avoiding their triggers
  • Following specific diets like low-histamine or low FODMAP (there is no specific MCAS diet and dietary changes are individual); controlling their blood sugar
  • Supplements* like Vitamin C, Vitamin D, quercetin, luteolin
  • Teas like chamomile or nettle
  • Regulating their nervous system

*Some people can have adverse reactions to these or the additives or preservatives in them

My specific contributing factors to MCAS

There can be multiple contributing factors to MCAS or MCAS-like symptoms. See my MCAS overview page here. I’ve managed to find several of mine, and after working on them, my symptoms have diminished greatly, and I don’t have as many triggers as before. 

I’ve definitely learned that MCAS needs a multidisciplinary approach and multiple aspects of health often need addressing. It’s been a complicated 5 years, so I’m going to talk below about what I’ve found my contributing factors to be. Read this article here for a broader list of factors that could be affecting you (mold is a big one for a lot of people but not one of mine). 

Low hormone output/perimenopause

Many women or people AFAB start having HI, MCAS, increased allergies during perimenopause. My symptoms came on about 9 months after losing an ovary at 34.

The more I learn about perimenopause, the more I see that many of the symptoms I currently have and attribute to MCAS overlay with perimenopause symptoms, such as:

  • insomnia
  • heart palpitations
  • voice changes/hoarseness
  • increased allergies
  • histamine problems
  • hot flashes
  • anxiety/panic feeling
  • tinnitus, dizziness
  • headaches
  • and more

Your hormones can play a role in histamine and mast cells. See The Curious Link Between Estrogen, Mast Cells, and Histamine.

Are your symptoms related to peri/menopause?

If you had a sudden onset of symptoms and you:

  • had one or both ovaries removed
  • had a hysterecomy (even if you kept your ovaries)
  • are a woman or person AFAB and 35 or older

consider that your symptoms could be related or worsened by perimenopause or menopause. We are not taught body literacy and not enough doctors – even gynecologists – can recognize the symptoms of peri/menopause, which is so much more than hot flashes! Resources and info on HRT on my website here.

  • oral micronized progesterone:  this made a big difference in my insomnia, anxiety/panic feeling, and food reactions.
  • testosterone cream: I started this after testing low in testosterone, and I was shocked that within 2 months I stopped having hot flashes, that awful anxiety/panic feeling, and headaches/dizziness after eating.

SIBO and gut dysbiosis

Some species of gut bacteria can release histamine, and gut infections like SIBO can reduce DAO (an enzyme that breaks down histamine in the gut).

I did a comprehensive stool sample which showed gut dysbiosis as well as giardia. There’s criticisms about these kinds of stool samples so this may or may not have been necessary to do, but it led to me taking 2 months of herbal anti-microbials based on the results. In doing so, my MCAS symptoms of anaphylaxis and racing heart disappeared! My insomnia also improved, and I could actually sleep a few hours at night (compared to before, where the only time I could fall asleep was passing out after being awake for 2 days straight.)

My naturopath then suspected I had SIBO due to my clinical symptoms, risk factors, and positive response to the anti-microbials. We decided to do a different set of herbal anti-microbials for a few more rounds. Interestingly, a few months after I treated my suspected SIBO, my 20 years of fibromyalgia pain went away as did my interstitial cystitis pain. Although my MCAS symptoms had gone down, I continue to have major abdominal bloating. A few years later, I did a SIBO test and tested positive for IMO, which I took antibiotics for. I’m not sure if the antibiotics helped as my stomach is still huge, but at this time, it’s too expensive to retest to see if they worked. More info on SIBO and gut dysbiosis on my website here.

Having a dysregulated nervous system

My nervous system was in a state of hyperarousal: my body went into “fight or flight” for the littlest thing, and stayed there much longer than necessary. In addition to the childhood trauma and 16 years of trauma of having endometriosis, the 2 surgeries I had 6 and 9 months prior to my MCAS symptom onset were incredibly traumatic.

With MCAS, I have noticed the tiniest amount of stress (be it negative stress or even excitement!) send my symptoms through the roof. At the onsite of my MCAS symptoms, I’d already been meditating daily since 8 years prior (which included yoga, qigong, chanting, body scanning, and visualization), and I’d done CBT for distorted thought patterns and swapping out my self-critic for a loving, compassionate inner voice. Therefore, I turned to programs designed to help your nervous system:

  • I used the Curable app for a year. This helped me to find safety in my body, calm my fight-or-flight response, and address repressed emotions and tendencies like perfectionism which were keeping my body hypervigilent and in a state of “danger”. My review here.

  • I did the Gupta Program for limbic retraining. The concept is similar to Curable on helping retrain the brain: to stop thought patterns around my symptoms. An additional component is visualizations of feelings of wellbeing and happiness my body during flares. I mostly liked the course and would recommend it. However, the price was very expensive, and I think there are other courses out there with similar teachings for a much lower price point.

  • MBody Community.  “Heal Your Chronic Pain or Illness with Brain Retraining and Nervous System Regulation.” I haven’t used this course but I’ve been following Tanner Murtagh for a long time and interviewed him on my podcast. Had I not spent my money on the Gupta Program, I would have done this course instead. 

Food triggers like histamine and others

Going on a low histamine diet did wonders for me. For about 6 months, I was ultra-low histamine because I had immediate, serious reactions whenever I ate food, even foods that are low histamine. I only ate once a day (when I got home from work) because otherwise I wouldn’t have been able to hold a job with all the symptoms food produced. Having such a limited diet definitely affected my mental health, but I didn’t know any other way to help reduce the intolerable onslaught of symptoms in order to stay employed. Those were dark times.

After treating suspected SIBO, my symptoms drastically improved and I was able to eat more foods on a rotating basis. Something that’s helped is buying frozen fruits and veggies, and eating a spoonful of a different one alongside each meal (not for the full meal, but in addition to my meal). This has been helping me expand the foods I can eat while limiting my reactions to my trigger foods. It also helps me feel more emotionally satisfied with my meals. I talk about tips for replacing foods vs restricting them, and identifying food triggers here.

Limiting my exposure to products

I basically cut out most skincare and cleaning products and only use the necessities (toothpaste, soap, laundry detergent, and shampoo). Even with those, it took a lot of trial and error to find ones I was less reactive to. See my page here for more details on this.

4 years later, there’s still no nail polish, hair dye, face lotion, etc for me, but I was able to get back deodorant which made me really happy (and less stinky!). I still use an N95 when dusting, cleaning, and painting.

Changing my lifestyle

My symptoms are sometimes still affected by activities like sex with my boyfriend, going in the sun, painting (my favorite hobby!), vibrations (like when trail biking), thrillers movies that put me on edge (and into fight-or-flight). For the first year while I struggled to come out of a continuous, nonstop flare, I had to change many of my activities because the symptoms they caused annihilated me.

Luckily, I’m now able to do all of these things again. On some days I have symptoms from them, on most I don’t. I try to be intentional about not doing multiple activities that affect me on the same day, and factoring in rest and flare recuperation time after an event.

Taking supplements/herbal

I use:

  • nettle tea
  • camomile tea
  • quercetin with bromelain*
  • vitamin C*
  • vitamin D*
  • various histamine intolerance supplements from Seeking Health

*I use these daily.

The rest I use when I’m in a flare or when I go on vacation, in which case I take them every day to lower histamine and stabilize mast cells.

Supporting my genes: I put my raw DNA online into various websites online to learn that I had a slow COMT gene which can influence histamine intolerance, so I took various supplements for a year to support my COMT. 

Medications

I use H1 and H2 antihistamines:

  • as a rescue when my symptoms are really bad
  • daily as a preventative when I go on vacation

I wish I had used them daily when my symptoms were basically destroying me and my life, but I didn’t know it was histamine related nor have a diagnosis at that time. I could have struggled a lot less as I worked to figure out my puzzle pieces.

Mast cell stabilizers:

I have not used these because I was scared and overwhelmed, but looking back, I was so desperately ill and struggling hard to eat and sleep. Using them may have sped along the process of getting to a more stable place where then I could stop them and only use diet, lifestyle, and supplements to support me.

There is hope

With any chronic illness, the grief that we can feel is overwhelming as we watch our hobbies, plans, and dreams get swallowed up by symptoms. When my MCAS symptoms first came on, I was already in an incredibly difficult moment of my life having just gotten diagnosed with endometriosis after 16 years, and having had major 2 surgeries within 4 months. When these new, scary, shocking, intense symptoms came on 6 months post-op when my body was still healing both physically and emotionally from excision surgery, the feelings of despair were so immense that I had intrusive thoughts of unaliving myself. It’s so important to get the mental health support we need. If you find yourself in a similar situation, please reach out to a professional or to a loved one for help. 

I was very lucky to find a blog of a girl living with MCAS (I’d link it but she’s taken it down since then) which talked about how changing your diet and lifestyle in accordance to your own personal triggers can make this condition survivable, and eventually, you’ll be able to build a life around the condition. “There’s hope,” she said. And her words stuck with me through multiple episodes of anaphylaxis, dizzy spells I couldn’t stand up from, and headaches that made me forget how to speak.

For me, it felt unsurvivable, but I made it through the worst year of my life. While I still have many triggers and have to be intentional with my diet and lifestyle, I’m not having a constant reaction to everything anymore nor anaphylaxis. There are days when my symptoms spike depending on my food, the activities I do, or where I am in my menstrual cycle, but most days my symptoms are now low. I’m sleeping 5-7 hours most nights, and don’t have to use anti-histamines to rescue me from flares as often. I’m able to leave my mostly MCAS-safe home and go on vacation, exposing myself to different foods/smells/activities, etc but only if I wear an N-95 mask on transit (to avoid fragrances) and medicate with antihistamines and supplements the entire trip.

If you are dealing with suspected or diagnosed MCAS, I can relate to how challenging, awful and devastating it is. Hang onto that hope, and keep looking for your contributing factors, be it gut related, genetic, hormonal, etc.

If you’re suffering right now, I’m rooting for you.