Mast Cell Madness.

I’m officially terrified by my mast cells because Christmas heralded another sick, sick few days. Almost as sick as Thanksgiving, so I’d have to say the 2nd sickest night of my life. However, this time, it all started with my tongue swelling up, which gave me more insight into the mechanism behind it.

I sometimes wonder if all my health issues stem from mast cell activation syndrome. I can tell the difference between ME symptoms and mast cell reactions, but, still, there’s this little seed in my brain that says, what if they’re at the root of EVERYTHING and I should be spending my time finding a doctor with MCAD expertise on this side of the country (it doesn’t seem to exist in Seattle)? I don’t do this because I am generally stable. On a day-to-day basis, I’m not having reactions — unless, of course, many of my chronic symptoms have mast cell degranulation at their core and I just don’t realise it.

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My health issues started with full-blown anaphylaxis, out of the blue, 9 days after my 28th birthday. Doctors were hopeless and gave no advice back then, not even daily preventative antihistamines. The common denominator was alcohol (but not every time I drank, so it was confusing), so, after the last trip to the emergency room in Dublin, where I almost died, I finally quit drinking and haven’t touched a drop in 13 years.

Before that, I had swelling in my eyes and hands and a severe edema episode once or twice that I didn’t really think much about. I linked it to Asian food, so stopped eating that and MSG and didn’t look any further into it. This was eventually diagnosed as autoimmune urticaria and angioedema and I was told to take Zyrtec, but didn’t want to medicate daily for an intermittent condition.

I’ve always had trouble with my periods — crippling dysmenorrhea — but they got progressively worse until I collapsed with syncope and shock 13 days after my 32nd birthday and was taken off in the ambulance. For 6 years, no doctor gave me any advice until, finally, an OBGYN told me to dump salt on my tongue. This doesn’t stop the collapses, but it certainly helps. These episodes continue to happen randomly to this day, always on the first day of my period and are, without a doubt, mast cell mediated, presumably low-grade anaphylaxis (very low blood pressure and pulse, bowel problems, syncope, shortness of breath).

anaphylaxis scale

I have a spot in my throat that has itched for years. It was actually the thing that lead to diagnosis of my toxic thyroid goiters and Grave’s Disease because I mentioned the itch to some random doctor who palpated my throat. I’ve now realised it signals reactivity in my body at a very low level. It’s almost always there, but, when it’s not or when it’s very bad, I pay attention.

I was flushing badly for years, thinking I had developed bizarre self-consciousness, but the self-consciousness was actually a result from flushing and having people point it out! When I was diagnosed with Grave’s, I thought it was a symptom of that, but it never went away after ablation.

Of course, in retrospect, there have always been issues I have dealt with, which may or may not originate with mast cells: thyroid problems and Raynaud’s can be a result of mast cell disorders. Also, constipation, headaches, low blood pressure, and temperature sensitivity (all of which got much worse in recent years). Finally, many of my ME symptoms could also be from MCAS: fatigue, joint and tissue pain, eye pain, vision problems, vertigo, episodes of low body temperature, scent/odour/chemical sensitivity, sinus problems, cognitive impairment, hair loss, decreased bone density (I have osteopenia, on the cusp of osteoporosis), shortness of breath, medication reactions, malabsorption, and tinnitus. See a list of signs and symptoms here.

It would be wonderful to be able to manage and control any of these issues, but none of them scares me like the nights I’ve had recently, not even full-blown anaphylaxis. I’ve tried so hard to figure out my triggers, but they are moving targets. Tongue swelling and angioedema are obvious, as is the very specific breathing difficulty you get with anaphylaxis (it is nothing like asthma or wheezing from an infection). I don’t get daily hives and itching like many people. My reactions now are all about the histamine bucket and completely dependent on where I am in my cycle and what is happening in my life. I may be able to eat anything one week and then suspect that those same foods are giving me sinus trouble, insomnia and a jaw ache a different week. My chronic daily headaches, tinnitus, brain fog and exhaustion could be from food choices, but I’ve never been able to pin down any causation. My diet is very low-histamine compared to normal people and how it used to be, but I still allow myself chocolate, coconut, store-bought chips, beef, almost all fruit, including dried and many things that others avoid. Could these things be contributing to my problems? Yes, but, without a definite correlation, I don’t want to eliminate foods. Once you’ve experienced anaphylaxis, “reactions” like a runny nose, constipation or aching hands are quite ignorable. The only thing that consistently caused a reaction was alcohol and my periods. And, now I can say with certainty, holidays and events, no matter how careful I am.

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I prepared for Christmas over the course of a month and a half, slowly bought presents and wrapped them, slowly wrote some Christmas cards, slowly got the spare room ready for my sister, slowly did laundry — over the course of weeks! Didn’t overexert myself at all. There was no excitement, no activities. My sister and her small dog came over, we watched tv and opened presents. I had rested multiple times throughout the day and the only not normal thing I ate was half a tiny piece of fresh King salmon, which had been brought in off the docks that same morning and, I was told, caught the day before.

My tongue started to swell up after dinner. By the late evening, I had gotten upset for really no good reason (which has historically happened with my mast cell reactions) and was flushing. I had a bad reaction to about 15mg of Benadryl a week or two prior, so I was scared to take a decent dose on this night. I bit a dye-free capsule and put a drop on my swollen tongue and went to bed. At 2am, I awoke with the same evil that I experienced on Thanksgiving and the night after starting Cromolyn (before going to the AirBnb rentals back in September — it was a few days before my period that time, too). I was shaking so badly, I couldn’t lift the water glass, I was drenched in sweat and had weird runaway chills coursing through my body. I crawled on my hands and knees to the bathroom, which scared the shit out of me because, through all the worst of ME, that’s only happened once before. I fell into harrowing nightmares and woke up gasping for breath over and over, feeling poisoned and infected. I dreamt that I was sick and dying and my husband wasn’t paying attention or taking it seriously. I dreamt that I was sick and dying and my mother laughed at me (this isn’t remotely based in truth, this is my terrified mind not knowing how or where to get help). I dreamt that my dog’s neck was broken and I was carrying him to get help, but I was sick and dying and couldn’t do it. And, finally, I dreamt that I was lying on the floor begging my husband over and over: “Please kill me. Please kill me. Please kill me.” I woke up sobbing and so wrung out.

That morning, my period came 5 days early. You better believe, if I had known my period was going to arrive Christmas Day, I might have cancelled Christmas. Or at least postponed present opening for a day. And definitely not eaten even the freshest salmon.

In the past, my anaphylaxis episodes went like this:
My friend A’s birthday party.
My friend C’s birthday party.
Oktoberfest.
Easter party.
C used to joke that I was allergic to fun. I can’t believe he was right. I collapsed and had the paramedics called twice while my mother was staying with us and, also, when my best friend was here from Ireland — both were “events”. I started to get paranoid that, psychologically, I was somehow causing my system to crash when there were visitors. But, every single one of these times, I had my period. There were only a few anaphylactic episodes that I can remember when it wasn’t the first day of my menstrual cycle. EVENT + MENSTRUATION = MAST CELL MELTDOWN. But I think I only really and truly started to believe this 100% on Christmas.

So, Christmas day is a total haze. I crawled downstairs a few times to eat and try to put on a good face, but I don’t remember much and dozed most of the day. Like Thanksgiving and September, however, I bounced back quicker than I could have ever anticipated. That night I kept marveling, “How am I speaking? How am I sitting up? How am I alive?” When it’s bad, you honestly want to die. When it ebbs, the human spirit kicks back in shockingly quickly and you just get on with it, until the next time when you are surprised anew at just how bad the bad is. I didn’t even really modify my diet. I continued to eat my almond butter, coconut ice cream and drink bone broth and tea (all high-ish histamine). If anything, I felt more, Oh fuck it, how much worse could it be? At this stage, I’m much more scared of menstruation and engaging in any sort of event — even one in my house, in my pajamas, with only a single guest.

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I am currently putting together an informational kit (in a bag that was donated to me by a member of one of my groups), so my husband has something to grab in the event of an emergency. My dilemma is that I’ve managed to avoid drugs all this time (never had to use my EpiPen), so I have no way to premedicate for things like plane flights, dental work or necessary procedures like a CT scan or colonoscopy (which my doctor has wanted me to get for years, but I refuse because I’m worried about reactions). I have no safe protocol. 13 years ago, I got IV diphenhydromine for anaphylaxis, now I react to 15mg of Benadryl! 5 years ago, I had IV morphine for dysmennorhea, now my breathing shuts down with a crumb of hydrocodone or codeine. What would happen in a real emergency? If I need surgery? Knock on wood, toba toba, ptooey, ptooey. Once I have everything compiled, I will post it here.

Having said all that, I’m really in quite a good place, feeling happy and hopeful about the new year. Maybe because I realise that these reactions are mast cell degranulations and not ME relapses and that takes some of the fear away. Somehow dying from anaphylaxis is less scary than becoming permanently bedbound with ME. Perhaps only people with both illnesses will understand that. So, here’s what I did New Year’s Eve:

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As well as resilience, forgiveness, positivity and optimism, I’d also like to request that 2015 doles out truckloads of health, wealth and happiness to all of us. That’s all. That’s not too much to ask, right? 🙂

DIETS Part II: compounded eliminations and low-histamine hell. I mean help. :)

It’s 8am and I’ve already been awake for 3 hours. I’m sick and unemployed, I should be sleeping ten hours a night. I should be sleeping late and luxuriating in the fact that I no longer have an alarm clock going off, a company to oversee, and bosses to answer to (… and bosses to whom to answer). My brain should be able to shut down and heal. It’s February, for fuck’s sake. Time to hibernate. I’ve been missing exciting life and getting absolutely nothing done for 17+ months now ~ why does my brain feel like it has to be on high alert ALL. THE. TIME?

Throughout the day, I’m a dizzy zombie, unable to accomplish anything, but my mind is weakly turning over like the Little Engine that Could trying to get up that hill: What do I need at the store? What could be causing my forehead rash? What will I eat for dinner? Will I try a sleep drug tonight? And then the night rolls around and that little engine reaches the top of the hill and starts to fly down the other side: HOW DO WE NOT END UP DESTITUTE? HOW CAN I MAKE MONEY? I NEED AN M.E. DOCTOR! WE NEED TO MOVE!

So, it feels like ~ and I think it’s the reality ~ I never deeply sleep and I never truly awaken. I am existing in a netherworld, a slightly off-center plane of existence where everything is blurry and too bright, where everything is too loud, but also muffled under ear-ringing… a place where you try to do something month after month, but, during the day, it’s too much energy and, at night, it’s too… sepulchral.

Case in point: I honestly thought it had been about one month since I wrote my diet post, but I see it has been more than three months. That’s a quarter of a year. Three months from now, I will be 41 and it’ll have been a year since I wrote “birthday present thank you cards” on my to-do list (they’re still on the list). Actually, three months from now it will be exactly 5/19 (in American date writing) and those closest to me know that that number means something (what, exactly, I don’t know. One day I’ll write a post about my weirdness with numbers).

raspberry pop tarts

raspberry pop tarts

Today, I woke up starving. It’s now 11:30am and I have already eaten a raspberry “pop tart” (click above image for recipe), some apple, a beef breakfast burger with acorn squash and coconut cream, and a mug of bone broth with sauteed kale, asparagus and parsley.

To continue the saga of how I got to this strange way of eating: When we last discussed food, I had just started a strict low-histamine diet. Before ME, my crazy heath history included idiopathic anaphylaxis, autoimmune urticaria and angioedema, flushing, vasovagal syncope/shock, and a slew of other things that could be caused by histamine intolerance and/or a mast cell disorder, such as medication reactions, dysmenorrhea, osteopenia, headaches, tinnitus etc. I thought if I were very strict with the diet, I’d be able to quickly tell whether or not it would make me feel better. I poured over online histamine lists for weeks. Information is very conflicting because histamine levels fluctuate based on where the food was grown, when it was harvested or slaughtered and how long it has been in storage. Also, if you listened to the interview with Dr. Joneja, you know that histamine is a very important neurotransmitter in your body, but it can build up over a period of time and, if your bucket is overflowing, you will have a reaction. In other words, the salmon with lemon on Monday may not do any harm and neither might the wine and chocolate on Tuesday, but the eggplant on Wednesday might just put you over the edge and you have flushing, a migraine, hives. Or worse, anaphylactic shock. It is a process of trial and error for everyone attempting this diet. You have to figure out what affects your body.

The two best histamine food lists I found were Dr. Joneja’s and this one out of Switzerland, which shows histamine liberators and DAO inhibitors (more on this later) as well as foods that are naturally high in histamines. If you are as insane as I am, you can look at the strictest list possible, which I compiled from the two linked lists as well as about five others. My list is so short because I wanted to know the foods that everyone agrees are probably safe.

I ate strictly low-histamine foods for about month and, let me tell you, it was far more difficult than all the other diet modifications put together. Even a loose attempt at low-histamine is a slice of hell. The dilemma in which I found myself was that I kept adding elimination on top of elimination. So, over the course of 20 months, I had eliminated gluten, tomatoes, eggs, and strawberries; then dairy, legumes, all grains but oats, nightshades, and most processed food; then soy, citrus, pork, red meat, lunch meat, shellfish, condiments, maple syrup, and honey. I added a few things back (rice, red meat, honey), but everything else stayed out. Once you adapt to certain meal staples, it is difficult to change ~ especially when someone else is shopping and cooking for you. And then, on top of these, I went low-histamine. I stopped eating most herbs and spices, spinach, avocados, sweet potato, chard, all vinegar, all fruit except apples and pears, all fermented foods, leftover foods, all fish, chicken… and red meat was out again. It was these last few that set me up for the fall. Having no leftovers in the fridge left me scrambling to find things to eat. I hadn’t figured out how to buy the freshest meat or the process of cooking and freezing to ensure I had meals on hand. I hadn’t figured out how to get enough protein when I wasn’t eating dairy, legumes and most meats. I decided not to give up nuts and seeds, which are avoided on the strictest histamine lists, because they were providing the vast majority of my protein. Still, they weren’t enough and my blood sugar started crashing daily, sometimes multiple times a day, sometimes in the 40s and 50s.

If anyone has experienced severe hypoglycemia, you know how scary it can be. Suddenly I didn’t care about any other symptoms, I just needed my sugar to stablise. Mainly veg does not work for my body. And so my husband became the Fresh Meat Scavenger and I became the Great Meat Eater.

To be continued (sooner than three months from now) with honourable mention to ketogenic, alkaline, low-salicylate, migraine, mold, AIP, and low-sulfur/thiol diets…

DIETS Part I: gluten-free, allergy, autoimmune/anti-inflammatory, classic elimination, and low-histamine.

My mother told me recently that she only gave me soy milk for a long time as a child after my allergy testing showed I was allergic to half of the things on this planet. This is when I was 3. I’ve always known the story of the skin-prick tests done on my tiny 3-year old back. My mother was torn in pieces listening to her baby wail, so I’ve heard about it often. I knew the testing showed I was allergic to lettuce and rabbits and newspaper and so many other things it seemed like a joke. I thought we had always just ignored it to no consequence and that the first thing I ever stopped consuming was MSG sometime in the 90s. I kept swelling. One day, I awoke with my face blown up like a balloon: my eyes were slits, my lips made it difficult to speak, I could barely bend my fingers. This happened after eating frozen egg rolls in the wee hours, after a night at the pub, so I became really vigilant about avoiding MSG. Then, a few years later, I ate at a Thai restaurant with my sister. I never tempted fate with Asian food, but, god, I missed it! and the restaurant swore there was no MSG in their food. The next day, my face was swelled up, so I never tried that again. I still don’t know if the culprit is definitely MSG, but avoiding it, as well as all Asian food, stopped those acute episodes.

My next elimination was alcohol in 2002. It should have been difficult, but I thought it might be causing me to repeatedly go into anaphylactic shock, so I had no choice. When you’re worried about dying, you’ll give up anything.

I ate and drank anything I wanted for ten more years. And I ate a lot. Since I shed my college weight, I’ve always been around 7 stone (I haven’t switched to thinking of myself in pounds because I like the nice neatness of “7 stone”) and my husband would joke that I ate way more than he did (he’s 14 inches taller than I am). After thyroid ablation in 2009, I couldn’t eat as much as I used to – I didn’t diet, my body simply got full quicker and wasn’t hungry all the time anymore.

In 2012, while trying to cure what ails me, I stopped eating gluten. It never occurred to me that it would be permanent, but it seems it might be. It didn’t change how I felt one bit, but, after talking to numerous doctors and reading this book, it seems like it would behoove me to continue to avoid it – if not for ME, then for my (other) autoimmune conditions.

Soon after that, I had blood tests done that showed allergies to cod, tomato and egg. Giving up cod was no problem, tomatoes and eggs almost killed me. But, I thought, what if? So, I stuck with it and it’s now been a year and a half and, you guessed it, I felt no change.

When I started seeing the Good Doctor last year, she put me on a diet for autoimmune conditions which, she said, resembled most anti-inflammatory regimens. I stopped eating all grains but oats, all legumes, dairy and starchy veg. I cut down on sugar, I stopped eating processed foods, I stopped drinking sodas – even “healthy” stevia ones, even flavored fizzy water. I stopped chewing chewing gum, stopped eating lozenges with colourings. Although I missed all of these things, it was similar to anaphylaxis – I felt like I was (am) dying and would do anything to improve my situation, so the choice was easy. I stuck with this protocol for almost a year and… Felt no different.

This past August, my doctor switched me to a more “traditional” elimination diet. I was allowed to add back grains (except corn) and legumes (except peanuts) but stopped eating red meat, pork, processed meats, shellfish, soy, citrus, and most forms of sweetness: honey, maple syrup, agave nectar, and, obviously, sugar. This was only meant to last for three weeks before tackling challenges, but I took a turn for the worse with my symptoms and doing food challenges showed nothing definitive, so I’ve kept everything eliminated. Compounding this restriction was my low energy and my husband’s overwhelmedness with the changing shopping rules, so neither of us got out of the habits formed over the last year. I joyfully started eating rice again, but didn’t really explore other grains or legumes. Once you’ve been doing something for a long time, it seems a monumental effort to change.

When I saw the Good Doctor again at the beginning of this month, she wanted me to continue this elimination for three more weeks, while making a concerted effort to detoxify my liver because she is thinking of testing me for heavy metal toxicity and, if necessary, going through a chelation protocol. Specifically, what she told me to do was:

  • EAT FOODS TO IMPROVE LIVER DETOXIFICATION:
    • Cruciferous vegetables (broccoli, brussels sprouts, cabbage, cauliflower, watercress)
    • Kale
    • Swiss Chard
    • Collard greens
    • Garlic, onions
    • Grapes
    • Berries
    • Green and black teas
    • Herbs and spices such as rosemary, basil, turmeric, cumin, poppy seeds, black pepper, and lots of cilantro!
  • Metagenics Ultraclear formula: drink one shake each day (she already has me taking their probiotics and I get a patient discount).
  • Supplements [I am very happy to be taking vitamins again. I stopped all supplements and vitamins 3 months ago and never intended to stay off of them for so long. I’m eager to add more (CoQ10, Acetyl-l-carnitine etc.), but she is making me take things slow.]:
    • Vitamin D
    • Vitamin B6 & B2
    • Biotin
    • Glutamine
    • Zinc
  • Green detox soup[I said yuck to this soup because I thought it sounded like a warm green smoothie and I thought I didn’t like fennel, but it turns out it is SO DELICIOUS and I like to have some every day.]

This soup is a gift to your liver to help it with its critical role in cleansing and filtering the blood. Sulfur-containing foods, such as onions and garlic, will keep your glutathione levels and antioxidant power high. Cruciferous vegetables are great for all your detox pathways, especially estrogen. Enjoy this soup for breakfast, as a snack or any time of the day. You can make a big batch and freeze it in small containers.

Makes 4-6 servings

1 tbsp extra virgin coconut oil or olive oil
1 small onion, diced
1 tsp minced ginger
2 cloves garlic, minced
1 celery stalk, chopped
3 cups chopped broccoli, florets and stems
1/2 head fennel, chopped
1 tsp salt
3 cups water
1/8 tsp freshly ground pepper

Heat the oil in a medium pot on medium high heat. Add the onion and ginger and cook until onion is translucent. Add the garlic, celery, broccoli, and fennel and a generous pinch of salt and continue to cook another 2 minutes. Add the water, remaining salt and pepper. Bring to a boil, then cover, reduce the heat, and simmer for 20 minutes. Place the soup in a blender and blend until smooth and creamy. Adjust salt.

Now the fun part: I haven’t been eating the chard, onions, grapes and berries she instructed me to because I am experimenting with a low-histamine diet. I am always trying to link seemingly unrelated conditions from my past to what is happening to me now. Just like I thought (think) dysautonomia explained not only my symptoms now, but issues I had pre-ME like Raynaud’s and fainting, I started to seriously look into histamine intolerance (HI) and mast cell activation disorders (MCAD). The swelling, the idiopathic anaphylaxis (which happened more often than not during my period), the alcohol intolerance, the dysmenorrhea, the hypotension and syncope (which happened more often than not during my period)… All of this makes sense in the context of a histamine problem. I used to wrack my brain and research incessantly to try to figure out why I was going into anaphylaxis but they could find nothing to which I was allergic. Was it the alcohol? Was it my period? Was it garlic? Was it ibuprofen?

When the allergist explained autoimmune urticaria and angioedema to me, he said the rashes I got during anaphylaxis and the swelling I’ve always experienced were the same mechanism in the body, just in different dermal layers. He said they are caused by tissue permeability and leakage and any vasodilator, such as alcohol, will potentiate the problem.. To demonstrate the autoimmune process, he injected me with my own plasma and I had a reaction on my forearm similar to the histamine control. He said these episodes could be brought on by emotional turmoil or stress and there is nothing to be done but take antihistamines. I counted myself lucky because some people have horrible chronic urticaria (I really recommend the film, Fat, Sick & Nearly Dead).

The more I researched histamine issues, however, the more I realized that my allergist, like all doctors, is limited by what he doesn’t know and what science hasn’t discovered. I asked my GP, the Good Doctor and my new environmental doctor about testing for MCAD and every one of them said they don’t know how. It turns out there really aren’t good tests, but they didn’t know this ~ they didn’t know anything about it!

I am going to continue the info about my low-histamine diet experience in Part 2 of this diet post (as well as all the other crazy elimination diets I’ve been researching: ketogenic, alkaline, low-salicylate, migraine) because there is a lot of information. But I’m giving you homework, if you’re interested in this topic at all: Listen to Yasmina Ykelenstam’s (The Low Histamine Chef) interview with Dr. Janice Joneja. There are 2 parts, but the first part is the most important. Get comfy because it is 49 minutes long and have a paper and pen ready. I’m telling you, it’s worth it. Dr. Joneja is so clear and knowledgeable.

Until next time…