Mast Cell Activation Syndrome Feed

My 30-Year Battle with a Disease I Couldn't Name

Lisa Brunette 1989
High school, 1989.

By Lisa Brunette

In my early 20s I wrote for a fledgling arts newspaper here in St. Louis called Intermission Magazine, and one of the columnists was a New Age devotee named Jeannie Breeze. I don't know if 'Breeze' was her real name or a pen name chosen for its metaphorical quality, but my legal last name is Brunette, which is a family name, so anything's possible. Jeannie was a real character; she always wore a purple knit beanie (yes, even in summer), and she fluffed auras for a living when she wasn't penning columns.

Lisa B&W1995
On a bluff overlooking the Mississippi, 1995.

Jeannie once pulled me aside to say she "sensed" the physical pain I was in, and that surprised me because I didn't think I showed any outward signs. Maybe I did and didn't realize it (I'm not known for my poker face), or maybe Jeannie really was "in tune" with this kind of thing. But either way, she did me a real kindness: She gave me a poem called "Putting the Pain to Sleep." In it the speaker sang a lullaby to her pain, as if singing a child to sleep. It was maybe a little hokey for the edgy youth I was at the time, or at least fancied I was, but it helped.  

I've thought about that poem a lot over the years, and I've tried to put to sleep many a pain.

Back then I had two diagnoses for the symptoms I'd experienced since high school: 1) endometriosis and 2) interstitial cystitis (IC). Neither is very easy to talk about. Both center on inherently "embarrassing" parts of the body. The quest for the diagnoses themselves was painful and invasive, involving catheters and laparoscopic cameras and sample pieces of my internal tissue removed for examination. During one particularly painful procedure, a nurse assistant said:

"You just have to ask yourself, Why me? The answer? Because you can take it."  

I did not punch her in the face, but maybe I should have.

Lisa 1997
In 1997.

When a doctor wanted to put me on a drug that would essentially throw my body into 'fake menopause' in my early 20s, I got a second opinion. The new MD tossed out the endometriosis diagnosis but doubled down on IC. There's no cure for it, but we tried all of the available treatments. None of them worked.

Now I'd like to cue a montage sequence spanning more than a decade. It shows me living, laughing, and loving while simultaneously struggling with discomfort and at times acute pain (because that's what we do, right?) I want you to imagine the last UTI you had, how that SUPER sucked for you. Now imagine that's your life. There's no antibiotic for it, no moment of relief, just persistent pain and a blur of time spent in the bathroom.

Which is not to say I didn't have some nice periods of decreased symptoms, and even for brief spells, total remission. A good diet and exercise seemed to help, as well as stress-reduction. Exercise and diet were always easier to control than stress, though. Ya feel me?

Lisa_2002
On a beach in the Florida Keys, 2002.

Complicating the quest for a cure were some other health issues in the form of "allergies." Throughout childhood, I had awful hay fever, and I also often reacted to food with severe heartburn and systemic digestive distress. Attempts to control the reactions through diet were met with little success, though I tried a wheat-free diet for a time. I was also a vegetarian for 13 years and a vegan for a good portion of that, but I was miserable pretty much the whole time on a diet high in beans, nuts, and soy.

Prone to hives and rashes, it was often difficult to pinpoint a trigger for the reaction. Unlike other people I know with distinct food allergies, I didn't react to any food consistently enough to rule out the offenders. I was diagnosed with asthma and given an inhaler for the wheezing and chest congestion and told to take antihistamines for the rhinitis, but there wasn't anything anyone could think to do about the food.

By the time I'd migrated to the Pacific Northwest in my early 30s, my allergies were deemed severe enough to finally get me in to see an allergist. He prescribed an epinephrine pen and put me on a diet of only meat, vegetables, and white rice. But I was still a vegetarian, left with only white rice and vegetables. After developing walking pneumonia, I broke the 13-year meat fast.

Lisa2007
On a Washington state beach, 2007.

At this time I also began to make changes in my environment to reduce allergens. I zipped up the whole bed, box spring and mattress, in a plastic covering; donated rugs, down comforters, and other sneeze-inducing items; and washed all my bedding and towels in hot water. But I swear to this day it was hot yoga that got me out of the allergy loop. After a year of regular Bikram yoga practice, I felt better in all ways, head to toe. 

However, yoga only kept the wolves at bay for so long. After a few years, the allergies resumed even worse than before, despite a regular, committed yoga practice. With them came a new level of digestive distress, along with extreme night sweats, severe insomnia, a crazy amount of ringing in the ears, perceived hearing loss, benign cysts, joint pain, and inflammation.  It's a party all the time when you're giving blood, urine, and stool samples, undergoing procedures like colonoscopy and mammography before you're old enough to warrant them, and then being diagnosed with some third-world, parasitic disease.

Yeah, that's right. I had hookworm.

My MD had missed it; I'd finally resorted to paying out-of-pocket for the services of an irritable bowel disease clinic, which my insurance wouldn't cover. Not even after the hookworm discovery. It's so rare in the States, I had to travel to three different pharmacies to piece together enough of the drug meant to eradicate it. It wasn't that the hookworm infestation caused the other symptoms, though. It was just part of it. The theory was that since my system is always inflamed and reacting to foods, the hookworm somehow took hold and stuck around - for how long was anybody's guess. Hookworm isn't even supposed to survive in cool climates like the Pacific Northwest, and I'd left the tropics of Florida a full decade before this.

Lisa 2013
In 2013.

By my 40s I had to give up fruit juice, I could barely tolerate alcohol, and soy was a huge problem. There seemed to be nothing I could do for the insomnia and night sweats, and I wondered if I were heading into the great 'pause a bit early. The IC roared back with tremendous severity, and a catheter scope (now with video!) found landscapes of scar tissue lining my bladder, including one particularly gnarly beast that looked like the boss at the end of a video game.

Worst for me, the digestive symptoms went into overdrive, and my eyes became increasingly sensitive. Somewhat desperate by this point and not finding a whit of relief though traditional medicine, I tried vitamins and supplements, acupuncture, cleanse diets, the Whole 30, wheat-free/gluten-free/dairy-free/soy-free/egg-free/taste-free/satisfaction-free diets. I took up Pilates and dance. I flirted with meditation, joined a spiritual center, and even went to see someone calling himself the "bone whisperer." But things continued to get worse. 

Lisa2016
In 2016, because life's a merry-go-round.

Flash-forward to just two years ago, when I made a last-ditch effort to treat with two things I hadn't yet tried: medicinal herbs and Maya abdominal therapy

You might remember a couple of articles posted this year on the blog from Amanda Jokerst of Forest + Meadow Apothecary and Clinic. She shared her thoughts on how to foster a healthy immune system and how to support your immune system with herbs. I met her at a farmer's market, of all places. The final clue to my lifelong health mystery came from her.

By now you're likely wondering how all of these painful, annoying (though thankfully not life-threatening) symptoms relate to each other. Or maybe you've sussed out that they're all part of the same autoimmune disease. Good job, detective!

After Amanda and I went through - over the course of a year - absolutely every known cause and treatment for what might ail me, she proposed a couple of possible diagnoses:

Mast Cell Activation Syndrome (MCAS) and Small Intestinal Bacterial Overgrowth (SIBO).

6a01b7c6dfbed3970b0240a4d88cd7200d
Last year.

But of course Amanda will be the first to tell you she isn't a medical doctor. She referred me to a gastroenterologist whose specialty includes both MCAS and SIBO. 

It took me a year to get in because Dr. Leonard Weinstock has a loooong waiting list, and also COVID-19 happened. In the meantime, I tried another, more available general allergist, who was only helpful in a small way, switching my at this point regular antihistamine from Zyrtec to Allegra, which has fewer side effects for me because it doesn't cross the blood/brain barrier. Otherwise, though, I could do nothing but wait.

During that wait, my symptoms worsened further, to the point where I now react to a wide range of health and beauty products and household allergens. Eating in restaurants has become so difficult for me that I don't miss them as much in these lockdowns. 

When I finally got in to see Weinstock, I gained answers to questions I'd had for 30 years. 

Apparently, I'm a "poster child" for MCAS, in his words. After blood and urine tests, as well as a comprehensive review of my medical history, I now have a definitive diagnosis of MCAS. My condition is "clinically significant," and I've been placed in a research study. MCAS is a "spectrum" disorder; we all have mast cells. They're pretty useful for snuffing out foreign invaders like bacteria and viruses. Mine just behave as if there's always a war going on, and everything that enters is the enemy.

Every one of the symptoms and conditions I've mentioned above, from IC to the food, inhalant, and contact allergies, and including a nasty bout of colic I had as a baby, fall under the MCAS umbrella. 

Lisa 2020
On a Missouri river, 2020.

And the SIBO? Yeah, I have that, too. It often accompanies MCAS and is responsible for the severe bloating I've had (so much fun when people actually think you're pregnant, but you're not). This diagnosis was confirmed through a lactulose breath test. Fortunately, there's a cure for SIBO. It meant taking the same drug used to treat E. coli, a prescription that cost me close to $700 out of pocket. Without insurance, that price tag would've been $2 grand, and that's with a hefty pharmacy discount. Hopefully, SIBO's gone for good.

I'm not happy at all to tell you that MCAS has no cure. The only thing we can do is decrease the symptoms. So I'm trying a medication that works by triggering your body's endorphins as well as supplying a few of its own. Endorphins, those feel-good hormones that give runners a high, tend to get suppressed under MCAS, which is why my reactions often hit extreme on the pain scale. Let's hope that this drug works, and the side effects are minimal.

Because lately, it's been a lot harder to sing the pain to sleep, and that lullaby is sure wearing thin.

Note: Please do not take the information presented here as a cue to self-diagnose. As described above, my diagnosis was arrived at through testing and determination by a medical doctor with a specialty in gastroenterology. It's best to consult your physician with any concerns you might have. That said, be tenacious if you aren't seeing improvement. Medical science is quickly evolving, with new discoveries and answers turning over established ideas all the time. MCAS wasn't really a thing back in the 90s when my own journey began.

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Meet Chaco, the 'Indoor Only' Suburban Farm Cat

Chaco_Feet

By Lisa Brunette

I've had the privilege of sharing my home with a total of four dogs and four cats over the course of my life (though only as many as 3 pets at one time, and those were all cats). Of the lot, Chaco is definitely the most entertaining. As the lot includes a poodle who had the odd habit of 'hanging' his turds on plants instead of depositing them on the ground like a normal pet, that's saying a lot.

Chaco's a special breed called a Devon rex, and they're famously described as "monkeys in cat suits." The breed has an above-average climbing drive. This is evidenced in Chaco's need to get to the highest point in any room, consequences be damned. His only health issue is a torn ACL. The vet said we should probably scale back on his Olympic skiing events.

Chaco_Tree

A cat like this deserves to be spoiled a bit, with faux 'trees' he can climb on, of course. As he had the crazy luck to get adopted by a couple of middle-aged empty nesters, it probably won't surprise you to learn that he eats an only-raw food diet, has a an arsenal of colorful cat toys, and sleeps the day away on a heating pad.

Don't judge us too harshly on that last one, though - his breed lacks a guard coat, so he's covered only in short little corkscrew curls of fine down. He gets mighty cold, easily. It's my duty several times a winter's day to rub his ears between my thumbs and fingers to warm them. He also likes to set his cold toe beans on my neck till they toast up again. He's happiest when he's tucked inside our clothing with us.

Chaco_Vest

The short, curly hair is one of his attributes, though: He's as close to hypoallergenic as you can get in a cat. Which makes him the only cat that doesn't trigger an endless slew of mast cell reactions in me. I'm greatly thankful for this, especially because he's the most affectionate, cuddliest cat I've ever met. 

If you come over to our house, you're likely to get a 'kiss' from Chaco, as his breeder taught him to stick his face right up into yours for a smooch, and we haven't been able to break him of the habit. (Not that we've tried that hard.) He sleeps with us, of course; and he really likes the cleft of my neck between head and shoulder. If that's not available, he plops right down on my head. On more than one occasion I've felt something wet... trickling down my chin... yep. Cat drool.

Chaco_Paw

When we first got Chaco, I hadn't yet figured out what was causing my health problems, and we tried to keep him out of the bedroom in an attempt to ensure a symptom-free night's rest, just in case I did react to him. But when I was staying in an Airbnb during our lengthy wait to move into our current home, Chaco was able to push the double doors open to my bedroom, and there was no keeping him out. He took to it as if to say, There. As it should be.

Speaking of pushing open doors, he can pull them open as well. This is of course not a great trait to have in a cat, especially if you don't want your trash all over the kitchen. 

With his big eyes and ears, he has a bit of an alien look that I find simultaneously adorable and comical. He's especially goofy during play, and one of these days I promise I'll capture on camera one of his totally wacked-out 'gonna git you' poses. For now, though, you can admire him in this hat.

CatintheHat

He's indoor-only because the Devon rex breed is a miniature one, putting him at about a half or even one-third the size of a regular household domestic cat. As much as he likes to think so as he gazes out at the squirrels and rabbits and birds just beyond the window, he wouldn't be able to tough it out there on his own for very long. I mean, besides that torn ACL, he's just a lovable goof with delusions of predatory glory. He wouldn't be good for the birds anyway; a surprisingly sad number of them succumb to house cats as it is, so we don't want Chaco contributing to the problem.

Until we can erect a 'catio,' or somesuch, Chaco must enjoy the outdoors from the safety of his home. Yeah, you should hear him bemoaning the injustice of the situation if we're outside and the windows are open.

Chaco_Window

For such a small guy, he can really strike a commanding presence. Sometimes, when running the day job business plus this blog feels like a lot, I can just pretend that Chaco's the boss. 

Chaco_Boss

Chaco_Boss2

He can often make it hard to work anyway. This is a pretty common thing I've seen in other cats, the drive to distract you while you're working on something important at the computer, but Chaco's definitely the hammiest. It's like he knows exactly how to get me to laugh.

Chaco_ScreenPeek

When we adopted Chaco in 2016, it was with the express purpose of giving my stepson, Zander, the experience of living with a pet, something that was new to him. I totally believed Chaco was for Zander. But then Zander went off to college, and Anthony and I realized Chaco filled a huge empty nest for us.

There was never any question when we made the decision to move to Missouri from Washington state that Chaco would be included in that plan, even though it meant moving him via air flight... and it also meant towing my cat and all his supplies with me through a string of Airbnbs while Anthony readied our house to sell.

Chaco_StLouis

But having Chaco with us was more than worth all that. I hope this doesn't offend you, but I've often preferred the company of my pets to people, and Chaco is no exception. He's very much a part of the fabric of our lives here at the 'farmhouse,' even if he does make it impossible to start seeds indoors (he digs them up) or dry herbs on screens (he treats this as his personal resting spot). 

Chaco_Herbs

He participates in our backyard foraging by munching on the yummy wild garlic we bring inside.

Chaco_Greens

He even watches TV with us in the evenings, though he reacts a bit differently to some of the documentaries than we do.

Chaco_Bird

We're sure he thinks of us as lumbering, somewhat awkward colony mates, whose strange insistence on sleeping at night and remaining active all day must be tolerated. We try to give him the best life we can, because he puts a smile on our faces every day, giving us that warm, cuddly, interspecies connection.

We all agree that some days, the exact right thing to do is curl up in a blanket and let everything else go.

Chaco_Blanket

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Crockpot Congee: A Quick, Easy, and Healthy Rice Dish

Congee11

By Lisa Brunette

When I showed you how to cook a perfect pot of stovetop rice every time, I mentioned that next up I'd demonstrate a quick-and-easy recipe for a crockpot rice dish. That dish is the Asian rice porridge known as congee. Never heard of it? Well, neither had I until a friend spirited me away to a delightful, unexpected place in Seattle's International District called the Purple Dot Cafe, where I had my very first bowl of this heavenly porridge.

Congee's secret is a relatively low ratio of rice to water - and a slow cooking time. For this dish, I used 1 cup of rice to 10 cups of water instead of the usual 1:1.75. If that sounds like it might produce a bland-tasting ricey soup, never fear. Congee's packed full of ginger, garlic, and onion, making it just the thing to eat in the fall, when your body's readying for the winter season. In fact, the recipe I'm using below is adapted from Thompson Acupuncture's Ancient Roots Nutrition video series. Lindsey Thompson, as a previous guest here at Cat in the Flock, suggests congee as one of three recipes in her segment on the fall season in Chinese medicine. It's my favorite of all the recipes in the series.

But I'm breaking out of the fall mold here with a late-winter congee, and that's okay. The copious amounts of ginger in the porridge is a great spice for the transition season here between winter and spring. I had a whole head of cabbage I wanted to use - this porridge is full of it - and cooking rice by crockpot method is also part of my quest for a permaculture badge in food preparation and preservation. Not to mention, I was hankering for a bit of congee, and since I'm a few thousand miles away from the Purple Dot, that means I have to make it myself!

All right, on to the porridge.

Ingredients: 

  • Half a head of cabbage (or more if you desire)
  • A half or whole white onion
  • Fresh ginger root
  • Anywhere from 3-8 cloves of garlic, to your preference
  • Soy sauce, tamari, or coconut sauce
  • 1 cup of rice to 10 cups of water
  • Salt (optional)

1. First, dice at least half a head of cabbage and one onion. For this batch, I used a whole head of cabbage because I wanted to, but you use what you want. As Lindsey says, "Congee is really forgiving," so don't sweat the exact amounts. You can dice them small if you prefer, but I like my vegetables chunky. Place these in the crockpot.

Congee1

2. Next, grate a good amount of ginger into the crockpot. I used a whole, small-sized root. Depending on your love of ginger, you can use less - or more. Note I used a Microplaner to grate the ginger - I have to credit Lindsey for this tool as well, as I first heard about them from watching her video series. They come in multiple grate sizes meant for everything from nutmeg to cheese and are really handy to have in the kitchen.

Congee2

3. You can add in garlic, too, and the same rule applies - as much or as little as you wish. We like garlic, and I tolerate it much better when it's slow-cooked like this, so we went for a lot. Pro tip! Garlic cloves are way easier to peel if you pour boiling water over them first. I just found out about this from the first episode of the Netflix show Nadiya's Time to Eat (love her!). I was skeptical because every 'easy tip for peeling garlic' I've tried hasn't really worked that well, but this one actually does! 

Congee3

Congee4

Now for the garlic, I just use the traditional garlic crusher. I've had my OXO for going on seven years, and it works great. For me the Microplaner isn't as useful because cloves are too small to grip without the risk of grating your finger.

Congee5

4. Now for the rice. Like I said above, the ratio is 1 cup of rice to 10 cups of water. I used white basmati rice this time, but you can use any white rice. I'm not sure about brown, though; I think its "chewiness" might not work for congee. But feel free to experiment!

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Congee7

Lindsey's original recipe called for 10 cups of water. But it also contained fewer veggies, and since I went for the whole head of cabbage plus dialed up on the garlic and ginger, I added a couple of extra cups of water to compensate, for a total of 12. Remember, congee is forgiving! I've made crockpot congee numerous times, and it's always turned out tasty and satisfying.

Congee8

5. The last step is to season it with a bit of tamari or soy sauce, according to Lindsey, or with coconut sauce if you're me. Soy and tamari are both high-histamine products, which triggers a mast cell reaction for me. Yeah, it bites because I love the taste of soy (and tamari even better). I struggled with this through 13 years of vegetarianism and beyond, though, and it's just better for me to say no. The coconut sauce is sweeter, so I add a bit of salt to bring it over to the umami side of the palate. Then you can start the crockpot, cooking it for 6-8 hours on low. Lindsey recommends eight, but I've had success at just six. Still, it's good to know you can set this all up in the morning, work an 8-hour day, and come home to congee. It fills the house with the exhilarating aroma of garlic and ginger.

Congee9

And it tastes great. Though it's low in protein, you can drop an egg on it or eat it alongside a grass-fed beef patty, as we often do, to round out the meal. You could even top it with crumbled bacon, ham, seeds, nuts, or cheese, though I'd hate to subtract from the clarifying quality of the meal by adding a dairy product, especially if you're trying to bust a cold. 

Congee10

So there you have it: crockpot congee! But if you're ever in Seattle, I recommend heading to the Purple Dot to get your congee fix. You'll be glad you did.

(Note: We'll always tell you if we're getting a commission or anything else in exchange for mentioning or linking to the products, services, or establishments here on Cat in the Flock, but none of that's happening in this post.)

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