Tag Archives: gluten-free diet

The big 6

On Monday, July 29th, I intended to write about a momentous milestone in my life. But I wasn’t sure what to say that I haven’t said already before.

Finally, at the end of the day, feeling the need to mark the date, I went with, in the manner of all aspiring and procrastinating writers today, a Tweet: “As of today I’ve been gluten-free for 6 months. That calls for cake.”

If you’re into brevity, you might want to stop there. (But if that’s the case, I’m not sure why you put up with my blog in general.)

In response to my proclamation, probably picking up on the mention of cake, one Twitter buddy asked me if I ever cheat. We’ll come back to that one.

Another response came from Wendy of Palm Trees and Gluten Free, who wrote to congratulate me. She said, “It’s amazing how that date becomes as important as a birthday!”

I hadn’t thought of it that way, but it’s true. As on a birthday, I had that uneasy sense that I should feel different but don’t. Despite the importance we give to the occasion, a birthday usually doesn’t, in itself, represent a step forward. Sure, a few do grant you special privileges, like your 21st or 18th or 13th (if your parents truly didn’t allow PG-13 movies before then, that is). But by now, the majority of that kind of birthday is already behind me.

Instead, I’ve entered into that vast, undifferentiated stretch of road called adulthood, where birthdays are just markers of another year’s worth of life experience, thought of so rarely that I often can’t remember how old I am right away when asked. A birthday just means another year has passed. Not all at once, but second by second by second until 31,556,926 have fled.

Similarly, although six months’ worth of gluten freedom is a milestone of sorts, there was no reason to think that on the morning of July 29th I would wake up a changed person. Any change between the 28th and the 29th would have been so incremental as to be unremarkable. What’s important is the accumulation of improvements (however piddling) and experience over the course of those six months. Just like a birthday, this day meant no more than that I had made it a certain unknown percentage of the way through my gluten-free life.

As with a birthday, the amount of time the 29th marked seems simultaneously much shorter and much longer than it had really been. Shorter because, as has been observed again and again by writers more eloquent than I, it is in the nature of time to appear shorter when viewed backward than forward.

Longer because January 29th, the day of my official celiac diagnosis, wasn’t the first time I ditched wheat, barley, and rye. Almost three years before, I’d experimented with a diet low in pretty much everything thought to be tough on the gut (that’d be FODMAPs, and includes wheat, rye, and barley); I’d dabbled in “low-gluten” eating (which is basically a joke); and I’d done a whole-hog six-week gluten-free diet trial half a year before. Although it’s been six months of celiac-induced GFdom, gluten has been on my mind for longer.

Also because it’s been an intense six months. “I’m not sick because I’m stressed; I’m stressed because I’m sick”—how many times have I made that response? I still think it’s true, but it turns out not to be true that a diagnosis and prescription could take my stress away (hum that to the tune of the Berlin song). The certainty has eased some worries but added others: that the healing isn’t moving fast or far enough, that XY, or Z might have gluten in it, that I’m driving everyone crazy by talking about it all the time.

In honor of this date, I originally thought I might reveal all of my celiac symptoms on this blog (which you may or may not have noticed I’ve been quiet about, even as I bemoan our collective inability to talk about some of them). This wasn’t because you likely have any desire to know them but because I felt it would be terribly satisfying to cross off all those that had gone away.

But, after the sixth month, the truth is that few of what I believe to be celiac symptoms have actually resolved themselves. The gastro stuff is getting better, a little, but I still don’t know if the rest even are celiac symptoms. All I’ve gotten so far are “maybe”s and “we’ll see”s. To list what remains would be to jinx it.

So instead, dear readers, on this belated half-anniversary of my gluten-free rebirth, I leave you with only a promise: that six months, or twelve, or eighteen, or however many it takes from now, I will have crossed off more of that list. That I will not again succumb to the kind of complacency about my own well being that led to three years without a diagnosis. That I will beat this thing.

And—to answer my friend on Twitter—that no matter how long it takes, and how long it seems to take, under no circumstances and for no reason will I ever “cheat.”

Not even for cake.

Tagged , , , , , , , , , ,

Good news, bad attitude

Guess what.

My test results came back!

I had been anticipating them with the same bated-breath anxiety that has preceded every report card or grade posting in my life (like I said, total Ravenclaw). When the email appeared in my oft-refreshed inbox, here’s what I found:

My tTG antibodies, which in January were hovering at some nebulous above-100 level, are down to 4. Single digits, baby! With the “negative” range defined as 1 to 3, that makes me practically normal.

My vitamin levels, which we all know I was having some trouble getting up, are now normal to HIGH, thanks no doubt to the multivitamin I’ve been dutifully taking (increasing my risk of cancer with every milligram, if the New York Times is to be believed). The one exception is the still somewhat low vitamin D, which is hard to believe considering how much sun I get. I mean, look at this healthy glow:

Photo on 6-27-13 at 8.51 PM

My WBC is just barely low and my RDW is just barely high, which according to Google indicates anemia, or maybe AIDS, or, most likely, nothing.

Everything else? Normal, normal, normal. Normal!

This is good news. It means my body is backing off. It means I’m doing this gluten-free thing right. It probably means, as my sister reminded me, that the Arrowhead Mills popcorn was perfectly safe. Phew!

With the active siege nearing an end, I suppose it also means that my little sprue city has begun to recover. Somewhere deep inside me, villi are getting to their feet, stretching out, feasting on now-overabundant nutrients. At peace at last, my body will, I suppose, turn its attention to patching wounds and rebuilding infrastructure and, from there, to business as usual. The battle is won.

But, like any good pessimist, I’m not satisfied. Eating away at the sense of victory is the fact that I still feel about the same.

If you’ll permit me to return to the report card metaphor: It’s a bit like getting an A in a class without feeling that you actually learned anything. There’s a sense that the instructor missed something, that the serviceable papers you wrote and the multiple-choice bubbles you filled in merely concealed the depths of your ignorance. That if the grader were just a bit more perceptive you’d have failed.

Thus, the picking through the results for abnormalities; thus, the restless Googling of unfamiliar abbreviations; thus, the overwhelming urge to diagnose myself with latent adult-onset type 1 diabetes or Sjögren’s Syndrome or acute hypochondria. Like any objective, abstract metric, the test results are unconvincing in the face of my subjective but oh-so-concrete feeling of being unwell.

I’ll see my doctor in a couple weeks to discuss the results, and if the visit is anything like the last one, she’ll tell me not to worry, that this takes time, that a handful of months—however long they’ve seemed, however many blog posts you’ve crammed into them—are brief in the scope of celiac recovery.

In the meantime, I’m curious to know, for those of you with celiac experience: which went first, the symptoms or the antibodies? 

And, for everyone: how do you think I should celebrate?

Tagged , , , , , , , ,

A label-reading lesson from Hogwarts

3I’m here again to remind you that more than magic runs in the blood of J. K. Rowling’s wizarding folks. We talked about Moaning Myrtle last time, but let’s not forget our other prime celiac/allergy role model in Harrypotterland: Mad-Eye Moody.

This is a man who:

  • drinks from a personal flask rather than risking the dining hall pumpkin juice
  • drags around a magical trunk with seven locked compartments, one of which must be stuffed with Udi’s
  • has one magical eye that I’d wager can detect gluten down to 0 ppm
  • isn’t a stranger to skin issues
    . . . or mental issues
  • and, most importantly, knows the value of CONSTANT VIGILANCE.

All signs point to celiac.

Paranoia, double and triple checking, and intense suspicion of even the most innocuous-seeming thing may all be symptoms of paranoid personality disorder, but they’re also critical aspects of living free of gluten or food allergies. This past week, I learned anew the value of CONSTANT VIGILANCE after two separate sloppy errors:

  1. A few days ago, I bought a bag of salt & pepper pistachios from CVS. After eating a handful, I grabbed the bag in a panic to double check the ingredients, as I am wont to do, but this time, rather than resting easy that my first look was enough, I realized that though the optional “may contain” line didn’t list wheat, there were natural ingredients that I hadn’t queried. When I called Gold Emblem (the CVS grocery brand), a representative confirmed the pistachios were gluten-free. Still, I should know better than to eat it before I read it.
  2. Last night, I finished off a bag of popcorn kernels from Arrowhead Mills. Because I’ve been researching pure gluten-free dried beans recently without a ton of luck, it occurred to me to recheck this bag. Sure enough, no “gluten-free” symbol, which Arrowhead states it includes on products made on dedicated lines. I’ve eaten the popcorn over the course of months, simply assuming I must have done my research properly before I bought it. Apparently not. I have to wait till 9 to call their customer service line, but I’m kicking myself already.

If Mad-Eye were here, I know he’d be grumbling, “Elementary food safety, nobody bothers about it anymore.” I know, I know, Professor. Put me in detention, take points from Ravenclaw, but please, don’t let my popcorn have had gluten in it.

Tagged , , , , , , , , , ,

Congrats, grad! And a “needs improvement” grade for me.

My little sister graduated this weekend. The same little sister who used to agreeably complete the activity books I made for her, who walked to school with me in elementary school and shared several of my high school teachers, is now a college graduate—cum laude—with a degree in neuroscience! She never would have made it there without my activity books.

The proud siblings!

The proud siblings! Nice of them to provide spotlights.

Seriously, though, my sister is right up there among the smartest people I know, and I’m glad she’ll be using her own brain to learn more about the most complex structure in the universe (even if she does have to dissect a few songbirds to do it…poor songbirds). She’s going to be doing research related to the brain–gut axis, for the next couple of years at least, which I think is awesome. Why study one brain when you can study two?

Not only did little sis graduate with honors, but she also picked up some very nice compliments from some of her teachers who we met over the course of the weekend. “One of my best students ever”; “Personal impact on my own life”—yep, those things were said. Go Althea!

While my sister came out top of her class this weekend, I failed the main test before me, which was to navigate the weekend’s catered meals in a way that left me feeling safe and unstressed. Although I did call in advance to ask what the meals would be like, I called while walking to the subway on my way to work, rather than sitting down somewhere quiet with a list of questions to ask. My reception was spotty, the background noise was probably annoying, and I was in a rush. First mistake.

In response to my question about whether gluten-free (and vegetarian) options would be available, she said they would, but that there was no special ticket for gluten-free meals (unlike for vegetarian). She said I’d just need to speak up at the event and they’d be able to accommodate me. That should have been my cue to ask more about just how they’d accommodate me, but instead I thanked her and hung up. Second mistake.

In fact, it was a buffet (in a tent outside in the drizzly cold weather—thankfully the graduation was indoors, apparently for the first time since ’86, before Althea’s birth or mine). Everything was listed as gluten-free except for the rolls, cornbread, and desserts. Still, I was concerned that people were reaching over the buffet to grab the bread (and possibly spilling crumbs into the cole slaw on the way), and that the utensils being used to serve the entrees were brushing up against the bread on people’s plates and perhaps picking up gluten that way.

When I expressed these concerns—falteringly, apologetically, well on my way to tears—the head chef personally brought me a meal from the back. Everyone was accommodating and polite, even in the mob scene that was the tent full of several hundred starving graduates and their families, but I have absolutely no idea whether the food I wound up eating was really safe.

Because I didn’t ask. In advance or at the tent, where I shook the head chef’s hand. I didn’t ask, “What are the ingredients in the marinade?” or “Were the vegetables prepped on clean cutting boards that have not also been used for bread?” or “Was the cornbread made at the same time and in the same place as other components of the meal?” or “Did everyone change gloves between handling the rolls and touching the potatoes?”

Although this is the kind of question to which I routinely subject my family and friends, when faced with strangers, I didn’t ask. The time to do it was in advance, when I could have decided I felt uncomfortable and packed food instead. But I didn’t. And then when I had a second chance, I still didn’t.

Here's the family in the food tent. Do I look stressed?

Here’s the whole family in the food tent. Do I look stressed?

My sister assured me the staff is good about cross-contamination concerns, but it’s hard to be good about cross-contamination when preparing food for a crowd in the thousands. There were packaged Udi’s cookies and bread at the desserts station, but that doesn’t necessarily mean that everything else was done correctly.

As much as I’d studied up on the right way to eat out (by which I mean reading many, many fantastic blog posts on the subject), when it came time to put it into practice, I choked—like a college student who pulls an all-nighter to cram, then shows up at the test and blanks, or sleeps through it entirely. Not only do I not feel confident I didn’t accidentally eat gluten, but I didn’t enjoy myself as much as I could have, had I been better prepared.

Next time—which will not be for a long time because I am once again, dear readers, committing myself to eating only what is made in my very own home until I’m better—I’ll go about this the right way. Mindful of how miserable I was when I did it the wrong way, I’ll ask the appropriate questions in advance, and opt for the meal tickets if and only if I feel assured they’ll pull out all the celiac stops. I’ll show up with more than a KIND bar in my pocket in case the situation seems different on the ground and I decide not to chance it. I’ll have a nice time, I’ll be able to focus on the real reason I’m there, and I’ll eat food that I’m sure won’t eat me back.

Next time, like my sister, I’ll ace it.

Check out these posts for more on eating out gluten-free: Amanda’s set of posts advising restaurant pros, Jess’s “When ‘Gluten-Free’ Does Not Mean ‘Free of Gluten,'” and “Top 10 Questions to Ask When Dining Out Gluten-Free” at Thriving With Celiac. 

For a happier sprue story, I’ll tell you all about the graduation party soon. Do you have any graduations to attend this season?

Tagged , , , , , , , , , , , ,
Design a site like this with WordPress.com
Get started