Would You Like An Autoimmune Disorder With Your Autoimmune Disorder? (Part 6)

It started simply enough with some notes.

Like most writers, I carry a little notebook around me. It makes me feel just-pretentious-enough; a way to take notes on paper, which I can’t quite give up despite how much damn easier it is to take notes on an iPhone. But for me, iPhones are for grocery lists. My little notebook is a way to write down all the stupid ideas that come into my head (E.G: “A dog eats a bunch of crayons. He poops colors all over the backyard.” Hey, Maya Angelou I’m not.)

The night I was discharged, I realized the sheer amount of diabetes information I now had to calculate and track necessitated some kind of note taking. Blood sugar readings, bolus calculations, trends, weights. And since I already had my ever-present notebook, I began what has become a daily, borderline-obsessive written record of my “diabetes data”.

I didn’t intend to become such a freak-o, taking out my notebook every time I test my blood sugar, dutifully writing down the result. Tracking everything I’m about to eat, exactly how much insulin I’ve taken, and every single fingerstick I take. I’ve tried tracking in an App like a human from 2015, but diabetes apps kind of suck, in my opinion (if you’ve found a good one, PLEASE let me know), but writing is the only way that’s stuck.

Post one: 2/28/14: the night I was discharged from the hospital. My first self-selected meal as a diabetic.

If you’re interested, I’m doing old-school carb tracking in the image above: like, instead of writing the grams of carb (10, 25), as I do now, I’m calling things “1 carb” or “2 carbs”, which is this supposedly “simpler” exchange system that is, for good reason, kind of falling out of style. “1 carb” is basically 15 g of carbohydrate, 2 carb is 30, etc. I blame the hospital that “teaching” me this vintage 1980 strategy (literally, I “learned” it by having to watch a video from my hospital bed about counting carbohydrates that was made between 1985 and 1990).

Reviewing this page takes me back. Look at all those terrible blood sugar numbers! 2 Slices whole wheat toast! Mention of my dear friend, the visiting nurse who couldn’t quite believe how pathetic I was ! TWO motherfucking slice of whole wheat toast! Also, look at how terribly that first dose of insulin covered my first dinner out of the hospital! There hours later I was sitting on a robust 328! And, like… really… TWO slices of whole wheat toast!

One year later, I’m on notebook #4, and it’s actually pretty cool. I can open to any page, any day, and see what I ate, how the numbers looked, how much insulin I took.

I realize, to some, this might appear vaguely eating disorder-ish, but as a person who has actually suffered from disordered eating, let me assure you: I write not to prescribe, but simply to track. I can observe patterns, I can provide my doctors with the data they need to make suggestions. I can notice trends myself, use that to inform future decisions. It’s a good method, and it works for me.

In fact, it is this little notebooks that saved me, at least so far, from 6 – 36 weeks of an elimination diet.

OK, where were we? My doctor had just diagnosed me with Eosinophilic Esophagitis, an autoimmune condition that I had probably been suffering from for decades, which explained this weird, shameful secret habit I have of choking on food, and is caused by the extremely elevated presence of eosinophils in my esophagus. We’d been tipped off to the presence of these eosinophils by the sudden upswing in eosinophils in my blood…and when I say sudden, I mean crazy, scary sudden. Where your doctors are like “frankly, we’re a little surprised you’re still upright given these numbers…”

As Dr. S, the gastroenterologist, explained, EOE is caused, in some few, lucky cases, by acid reflux, and in those few, lucky cases, cured by nothing more than taking prilosec.

I wasn’t one of the lucky ones. Given my life-threatening allergy to tree-nuts, as well as my fairly inconclusive “low level” immunoglobulin allergic response to like 95 random things, it was pretty obvious that in my case the surge in eosinophils was caused by an allergic response.

And oh yeah, in case you were wondering, I did have more choking incidents in the period that my eos were super elevated. More eos, more inflammation, more inflammation, less space for food to get through. More choking. (Not pretty).

Dr. S was pretty much ready to jump me on an elimination diet. He was pretty scared of my EOS number, and wanted it down. The only other way to get that number down is by taking a swallowed steroid, a method that is fun for no one, but apparently especially not fun for diabetics because it makes our blood sugar nearly impossible to control. And, you know, then I’d be taking a swallowed steroid for the rest of my life. Not ideal.

But it was also September. And, in case you hadn’t gathered it from the literally thousands of words I’ve written waxing poetic about diet and body image, I sort of have issues with food. I was not going into my sister’s wedding, then the holiday season eating potatoes and spinach and nothing else. As they say in France: “Eh forget eh it.”

So I begged Dr. S to let me try the “it-could-be-acid” method. That gave me a 6-week reprieve, where I had to take Priolsec twice a day (kids, don’t try this at home – that’s well above the recommended dose and I only did it under the supervision of a doctor, duh), then throughout I’d go back, get more bloodwork, and cross my fingers that the eos were down.

Between you and me, I didn’t actually hope the prilosec was the answer. I’m not so naive as that. I am an autoimmune mess and have had food allergies my whole life. If this disorder can be brought about by food allergies, I would bet my left nipple that was the case with me. The only reason I asked for the prilosec trial is because I wanted time. I wasn’t ready to stop eating everything immediately.

Because here’s the thing: besides nuts, which I never eat because I know I am deathly allergic, those 6 common allergens are all things I’ve eaten relatively consistently my whole life. If EOE is truly exacerbated by a food allergy, and if I’ve had it in a low-level way for decades but suddenly my numbers got crazy bad, I just didn’t believe that one day over the summer my body decided it was going to become crazy allergic to dairy. I just don’t buy it. I’ve eaten wheat, dairy, eggs, seafood, and soy in consistent-ish amounts for 27 years. At no point in summer 2014 did I start massively over-consuming any of those five food groups.

Wouldn’t whatever caused such a huge surge in eosinophils have to be something that I started eating a lot more of? As opposed to something I continued eating a moderate amount of?

So, the question was: was there anything that, over the summer of 2014, I started consuming a whole lot more of?

On the surface: no. I would have remembered if I’d suddenly started eating 100 chicken nuggets a day or 85 pounds of kale. But still… maybe it was something more subtle? Wouldn’t it be great if there were a record of everything I’d eaten every day since the moment I was discharged from the hospital in February 2014? 

Wouldn’t it, indeed.

 

So, I studied. I was working on my red notebook (which served me well from 4/28/14 – 10/30/14, in case you were wondering), and I studied the records. I started by identifying the day I really first remember having severe stomach pains. Fortunately for me, I remember it was a Thursday in August, because I’d been in Philly that day and then I met my friend Robert for dinner that night back in NYC. We sat at a diner, and talked, and my stomach just started aching.

So: what did I eat that day?

Hmm… A lot of “see yesterdays” and “same as yesterdays”. It was a summer of consistency: I found things that I liked to eat, that I knew worked for my blood sugar, and I repeated. Easy.

In particular, there was this one breakfast that I ate again, and again, and again:

I probably started eating it somewhere around June, and it extended through August: essentially, my ground-zero time for the upsurge in eosinophils. Greek yogurt with a banana, a bit of vanilla extract, cinnamon, and, in July, flaxseed and chia seeds.

Yogurt and bananas have been daily features in my life for 20 years. Bananas come in and out, but eating them once a day, with yogurt, did not represent some dramatic change to my diet in the summer of 2014.

But the stuff I put in that mixture… that was an interesting thought.

Sometime in June, I’d read some article explaining that cinnamon was very good for blood sugar. Amazing! I thought: I love cinnamon! Something that I love that also happens to be good for blood sugar?! Sign me up! So, I started mixing it in with my yogurt/banana combo in the mornings. And, because that tasted good, I started adding more. If a little is good, a lot has to be way better, right? By July, I was mixing a heaping tablespoonful of cinnamon into my yogurt/banana combo every morning.

That might not seem like a lot, but trust me: it is. I was only eating about a cup of yogurt. A heaping tablespoon of cinnamon was enough to turn my white greek yogurt brown.

In retrospect, it was a stupid dietary decision to make regardless of whether or not I was allergic. The answer, no matter what, is “moderation in all things.” But it’s too easy to look for a magic bullet, and after hearing all the wonderful things I’d heard about cinnamon and blood sugar control, I was desperate for an easy solution. So I ate it. And ate it, and ate it and ate it.

And yes, there was the flax and, occasionally, chia, too, but those were by the teaspoonful, not by the tablespoonful. And they were not foods I’d ever eaten before last summer – and if I’m to believe the blood numbers, the always-slightly-elevated eosinophils that I’d had for my whole life indicated that it was something I was already eating that was causing this crazy response. Something that my body had never really tolerated, but that I’d suddenly introduced in abundance, that my body was like “OHGODPLEASESTOP” to.

The more I thought about the cinnamon, the more it really started to make sense. I had gone from eating a small sprinkling of cinnamon on top of my applesauce or in cinnamon sugar pita chips (no longer, alas…), to eating over a tablespoon a day. Probably from like, 1/16 of a teaspoon a day to more than a tablespoon. As in, hundreds of times more cinnamon than I’d ever before eaten.

This, to me, made more sense than the answer an elimination diet would seek: that one day my body just decided to be crazy allergic to eggs, or whatever, even though I was eating them in the same amount I’d always eaten them.

Could all this ridiculousness really be as simple as cinnamon?

I eagerly checked in with the GI doc about it, and he was not quite so excited about this theory as I was, particularly when the blood test I took to see if I have an immunoglobulin allergy to cinnamon came back nil. But remember: that’s just one of many kinds of allergies that you could have. I wasn’t dissuaded. By the end of September, I had cut cinnamon out of my diet entirely.

And, slowly but surely, my EOS number dropped – away from scary 45% to less-but-still-scary 25% to a bad-but-not-terrible 15% and then to a perfectly respectable 10.6%. I was still eating eggs, and wheat, and dairy, and soy, and seafood, but the number was still dropping. The only thing that was gone was cinnamon.

When I saw Dr. S in November again, he was less impressed: yes, it was good, very good, that the number was down, but 10.2% meant something was still there. We both agreed that the prilosec thing wasn’t happening (in fact, I’d just stopped taking them halfway throughout the 6 weeks after all of the allergy blood work came back… I’m too much of an autoimmune-o case for the answer to ever have been acid reflux).

I pushed back when he suggested considering an elimination diet again. I felt confident that I was onto something with my cinnamon hypothesis. I asked for more blood work (Digression: you guys, I am an expert at getting my blood drawn. I know exactly which veins are my squishiest, and after as much blood work as I’ve had in the last year, I don’t find it upsetting at all. In fact, I always watch and I have a mental list of the dozens of technicians who have taken my blood ranked by painlessness, speed, and friendliness. Frankly, they’ve all been pretty good. Except when they can’t find a vein, which, frankly, is ridiculous on me: I have big, squishy veins. So I do raise my eyebrows at the nurses who stick me then wiggle the needle back and forth inside my arm because they haven’t hit anything. Please. OK, Digression over.)

Anyway, I asked Dr. S to take more blood work – which he did. And he called me himself a few hours later to let me know that my EOS were down to 5.2%. As in, .2% above “normal”. The lowest I’d ever been, even before diabetes, was 4.2%. He admitted that maybe I was onto something with my cinnamon theory.

I am bummed that I don’t eat cinnamon anymore; it seems to have joined an ever-growing list of things I don’t eat anymore, but I’d rather give up cinnamon than yogurt and cheese and eggs and everything else in the world. And, even better, I haven’t had a single choking incident in 4 months. I’ve gotten my eos measured twice in 2015. On 2/11 I was at 3.6% and on 3/4 I was at 1.7%. ONE POINT SEVEN PERCENT, PEOPLE. FROM FORTY SIX. ONE POINT SEVEN PERCENT IS ALMOST ZERO. ALMOST ZERO!

So… as of today, 3/11/15, my prognosis is to monitor these numbers for about 6 months, and if they stay down (please, please please please please please), I get another endoscopy and biopsy so he can make sure there’s no EOS in my throat anymore. If there isn’t, then… that’s it. I see him once a year (yet another doctor to regularly see! hooray!) to make sure everything’s OK, I keep not eating cinnamon, and maybe, the next time we have dinner, I don’t have to discreetly run to the toilet to force out a piece of chicken that’s gotten lodged in my throat.

Oh, but don’t you worry: I still (officially) have a second autoimmune disorder. But whatever. I’ll take it.