Tag Archives: gluten

So, did I get into the Celiaction study?!

Sorry, guys. I didn’t mean to hold out on you, but you know how summer gets. You’re busy with your NEW projects, like relearning to play the guitar or jab-cross-hooking at the local kickboxing studio, all while trying to soak up as much sunlight as you can on those glorious long weekend days. The computer is the last place you want to be (especially if—cue the whining—you’re still trying to avoid screens in an effort to kill your sleep problems).

As I’ve mentioned, before officially enrolling in the Celiaction study I had to undergo an endoscopy (with multiple biopsies) to prove I still have intestinal damage and can therefore reasonably blame my ongoing symptoms on celiac disease, rather than a mystery ailment, hypochondria, or “somatization disorder.”

The endoscopy went down last week and was about as much fun as it always is to eat and drink nothing for twelve-plus hours, don an IV bag and a precariously fastened tent of a hospital gown, and get a camera stuck down your throat and into your intestines. (Getting paid for it, I admit, was pretty fun.)

no gluten hospital bracelet

My hospital ID and “allergy” bracelets. I also had a big “NO GLUTEN” sign on my bed in case someone gave me crackers while I was too drugged to resist.

For extra enjoyment, I woke up in the middle of the procedure. I was certain I was going to throw up and suffocate myself, but I stayed still, expressing my panic only through my now-wide-open eyes. I distinctly remember my doctor saying, after she noticed I was awake and before they put me under again, that I was being “such a good patient.” (That may be an anesthesia-induced hallucination, but I’m proud of it nonetheless.)

Celiaction study coordinator with my biopsy samples!

Shipping my intestines off for inspection

The study coordinator kindly consented to be photographed with the package of samples taken from the intestinal lining of yours truly, en route to the lab. I went home to sleep it off, and then—like all of you have been doing, I’m sure—I waited.

Are my guts damaged enough?, I wondered. Oh, please, let my guts be damaged enough.

Well, the verdict is in . . . and so am I! I’m not sure yet of the exact Marsh score, but the biopsies showed mild damage—an improvement over the “diffuse subtotal to total villous atrophy” I used to have, but not a full recovery. So, yay! I’m in the study! I’ll keep making my phone calls and soon I’ll start taking either ALV003 or a placebo.

No one will know which I receive—not me, not the researchers. Many other things are equally uncertain. Will I feel better? If I do, will it be due to the drug? The placebo effect? The kickboxing? Or just time, steadily continuing to do its work?

Because it’ll be so uncertain why I’m feeling however I’m feeling in a few weeks or months, the study coordinators have asked me to refrain from publicly sharing my health progress during the trial. Out of context, my symptoms or lack thereof won’t reveal anything about the medicine’s effect, but my reports still might unduly influence someone else in the study who happened across this blog. In the name of Science, I’m happy to oblige the request (and was flattered to receive it!).

So, this is the last you’ll hear from me for now on how I’m doing (middlingly). I’ll still likely write about the study, just not my symptoms. If you find yourself dying to know how I am, and you aren’t in the study yourself, I welcome any and all questions, however personal, by email. Otherwise—assuming my summertime laziness subsides—I’m sure we’ll find plenty of other stuff to talk about!

What are your summer projects? How was your endoscopy experience?

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Dear Gluten: Find Your Own Dating Website!

Stumbling across someone you know on OkCupid is so awkward. Worst of all is when it’s an ex. Your cursor hovers over the profile image until curiosity takes over and you have to click, even though you know you’ll show up in his visitors list, and therefore he’ll know you looked. (Then, you check in every hour to see if he peeked at yours, and, if not, wonder why. Did he not check in? Did he resist temptation? Does he just not care?)

Anyway. Here I am, minding my own love life, and who should I come across but our old friend gluten? Naturally, I looked—and now you can, too. (Click for the full-size version.)

OkCupid dating website profile for gluten

I don’t know what I ever saw in him. I valiantly resisted sending a message, but I did rate his profile 1 star, just to be vindictive. And no, he hasn’t viewed mine.

If you’re baffled, you might want to read my previous letters to gluten here and here. If you’ve read them and are still baffled, I can neither blame nor help you.

Savvy OkCupid users will notice I left out the section on gluten’s favorite books, movies, TV shows, music, and food. I did that on purpose so you can help fill it in! Whaddaya say? Is gluten a rhythm & blues kind of guy?

* “Bready for love” profile photo © Oyvind Solstad | Flickr

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Insomnia: A Sob Story (with Gluten?)

Yawwwwwwn. If I’ve seen you lately, I’ve probably graced you with one of those. It’s not that I’m bored or being rude. It’s just that sleep . . . hasn’t been happening lately.

I’ve written before about such light, possibly celiac-related topics as bloating and hair loss. After several low-sleep months, I felt it was time to address this new one. I’ve tried writing this post many times already but kept falling asleep in the middle of a

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Just kidding. Honestly, if I could fall asleep so readily, I’d welcome it (and then complain about it). But, I can’t. So, with all of us alert, let’s talk insomnia.

In the past, I’ve occasionally gone up to a few days having trouble falling asleep. Lately, though, it’s been constant.

Insomnia, among other sleep disorders, is on the laundry list of conditions associated with celiac disease. Jane Anderson has written it up for About.com. That said, like bloating and hair loss, it’s also associated with a million other conditions and sometimes exists on its own. (The NIH can tell you all about it.)

So, where’d mine come from?

Because my insomnia started long after I went gluten-free, I have a feeling, for once, celiac’s not to blame. However, in the past, I did wonder if occasional insomnia meant I’d been glutened. (I’ve never “caught someone in the act” of glutening me, so it’s hard to be sure. Still, certain blech patterns appear.)

Thus, my first thought was: have I been eating something new and contaminated that I didn’t properly check? I don’t think so . . . though I did eat too much gluten-free junk this winter. A dietary spring cleaning is underway, and way needed.

Insomnia cookies

Not gluten-free. Probably for the best.
Photo © Robyn Lee | Flickr

My next thought was to blame a new medication. Insomnia’s not a known side effect, but I wouldn’t put it past my body to react in a unique, idiotic way. It’s slimly possible that the medication was contaminated; though I checked with the manufacturer, I received the standard “We can’t guarantee it” response, since they don’t test their final product. Having stopped taking it, I’m waiting for changes. So far, zilch.

Or maybe it’s stress? It is a possible trigger for roughly 75 percent of bad things. A colleague gave notice and I got promoted right around the time this started. Not bad, except that I feel even more buried than usual underneath a mound of work that never shrinks.

At night, as I try to make myself a willing vessel to oblivion, my mind jumps to multiple unchecked to-do list items. I’m not going to do any of them in the middle of the night, but I do shift position, refluff my pillow, and worry about it. (Mindfulness gurus would say to keep a notebook on my nightstand to jot these things down. Setting this up is something else I never manage to check off my list.)

Sprue Jr says labeling it “insomnia” is the problem: that by expecting it, I perpetuate it. But I disagree. It is . . . what it is. And insomnia by any other name would still suck.

While I’m not sure what is causing my insomnia, I can tell you one thing my insomnia has caused. Sleeplessness, you see, leads to bloglessness. For some time now, I’ve been down to one post a week. And it’s not for lack of ideas or time, I swear. It’s lack of sleep.

insomnia digital clock

Watching the clock is another insomnia no-no. Seriously. Don’t do it.
Photo © Fairy Heart | Flickr

Sleeplessness spawns laziness in more ways than one. It saps your energy, motivation, and attention. Sleep is incredibly (though still largely inexplicably) valuable to humankind’s ability to think, learn, and generally function.

Staying awake too late the night before encourages endless snoozing sessions (a horrible habit, and not actually restful at all, but tell that to my half-conscious brain) and skipped morning workouts. Bummer, because “regular exercise” is another top tip for insomnia prevention.

After feeling tired all day, it’s inescapably appealing to go to bed as early as possible. Plus, standard anti-insomnia advice preaches not to stare at backlit screens at night, so I’ve been trying to power down earlier, even if it means no post the next day—and even if I’m likely enough to simply lie in bed, unable to nod off, for hours, wishing I’d just stayed up to write.

Sluggishness and sleeplessness: two miserable conditions that reinforce one another nightly.

I’ve tried melatonin, chamomile tea, and valerian root, which I must tell you smells like death. None worked.

Still, I’m hopeful this’ll be the last time I complain to you about sleep. It’s spring: time for regeneration, spending time outdoors, being active, and maybe less stress at work. Somehow, I feel this must get better.

But for the time being, at least, my posts will continue to come about once a week, possibly sporadically, and I hope you’ll keep checking in despite that (subscribe, even—make my day!). At heart, this blog is about health; and right now, for me, that means getting back to zzzzzzzzzzzzzzzzzzzzzzzzzzzz . . .

Do you struggle with insomnia, or have you ever? Does it seem to be linked to gluten? What works or doesn’t work for you? 

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April Fools! 6 Gluten-Free Pranks to Play Today

I’ll be back soon with more absences of answers to ever-present questions about celiac disease and other gluten-related disorders, but I thought I’d take a break for April Fools Day.

This day last year, I convinced a few people that Dunkin Donuts would be going all gluten-free by 2015 (sorry!). Between then and now, the chain announced that, although it wouldn’t be dropping wheat from its pastries entirely, as I’d “predicted,” it would introduce wheat-free goods to every store nationwide in 2013.

The gluten-free community got pretty excited about that. But sadly, the joke was on us: Dunkin Donuts reversed the decision months later, with little explanation, before I even got to try one of those shrink-wrapped muffins. A lot of people were disappointed, and truth be told, I felt a bit responsible, as though I’d jinxed it. So this year, none o’ that.

However, superstition aside, there’s no reason not to get what laughs we can out of our chronic disease. If you haven’t yet decided what jokes to make today, here are a few you could try:

“Guess what! I don’t have celiac disease after all.”

Just as it’s good to have an all-purpose GF flour blend (if such a thing really exists), a good all-purpose trick comes in handy, too. Play this prank on just about anyone. Take it to the next level by whipping out a sandwich (which should of course be made with a reasonably uncrumbly gluten-free bread, unless you’re a truly dedicated prankster) and taking a big bite.

Girl eating sandwich

This “gluten” sure is good!
Photo © Jessie Jacobson | Flickr

“Soooo . . . celiac disease is contagious.”

Said with a bit of a wince and an “oopsie” expression, this is handy for that annoying coworker who’s always sticking his gluteny hands into your gluten-free snacks. To kick it up a notch, come up to him later, stare intently at his elbow, and when he asks what you’re doing, say, “Oh, I thought I saw some dermatitis herpetiformis. It’s probably nothing, though.”

“Bad news. They just found out potatoes contain gluten.”

This joke has limited utility. Most people with celiac won’t believe it; most non-celiac people already do.

Mr. Potato Head and family

Personified potatoes: Creepy? Yes. Glutenous? No.
Photo © Jeremy Page | Flickr

“I’m going back to school to become a [dietitian/gastroenterologist/celiac disease researcher].”

This is another good one to use at work, though probably not on your boss. If your parents are still paying off loans from your undergraduate English degree, maybe you’d like to try it on them, too. To really go for it, forge a letter of acceptance to display to the skeptics.

“Turns out, gluten is bad for everyone.”

Several savvy authors have made a killing off of this classic, so why not get in on the fun? Arm yourself with statistics and direct your chosen fool to the library to learn more. If it’s in a book, it must be true.

girl eating bread and yelling

Breeeaaddddd. It’s coming for you!
Photo © Eltjo Poort

“Hey, did you hear about that new gluten-free and vegetarian restaurant opening in Washington Heights next month?”

That’s not funny.

gluten-free restaurants in New York - Gluten-Free Fun map

See this map of gluten-free-friendly NYC establishments created by Erin of Gluten-Free Fun (interactive version here)? Cool, right? See how many are north of Central Park? …yep. But hey, it’s home.

Happy April Fools Day! Hope the jokes are on everyone else and not on you.

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