The Week of the Nutter Butter

It was heartening to learn yesterday that not every doctor’s office gives out crackers after a celiac endoscopy. (There were also some less heartening doctor stories, but that’s pretty much par for the course—this is going to be another one, fair warning.) But the conversation raised another question for me: If you (or your kids) have been tested for celiac disease, did you eat gluten while you were waiting to hear the biopsy results?

Snide remarks about Keebler’s aside, I must admit—I did. While I waited for my results, I chowed on garlic naan; I slurped cookie dough pudding from Sunshine Happy Something-or-Other Bakery in Chinatown; I went to a dear friend’s apartment for dinner, where he served up mushroom-barley soup. (“It’s gluten-free!” he said. “Besides the barley?” I said. “…Oh,” he said.)

But, mostly, it was the week of the Nutter Butter.

I ate Nutter Butters almost every night of the week after my endoscopy before my diagnosis was confirmed (nine days, actually, not that I was counting). I’d get to the end of the day thinking, “Maybe I won’t do that again today,” and then I’d buy a pack anyway. The guy at the corner store came to recognize me and probably wonders where I’ve been lately. If I’d been more honest with myself at the start of that week, I could’ve bought one family-size package and done the whole thing much more cost-effectively. This may be pushing the limits of strange eating behaviors to which it’s okay to admit on the Internet, but on several of those nights I opened up the cookie sandwiches and spread them with jam. (Great with strawberry, and surprisingly good with fig.)

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I ate those things like I’d never be able to again—which, of course, I was correctly assuming would be the case. (Oh, sure, Pamela’s has a peanut butter cookie, and there are knockoff recipes all over the web, but if it’s not in the shape of a peanut and mass-produced it doesn’t count.) Do I even like Nutter Butters that much? I don’t know. It was a compulsion.

By Monday, going in to week two, I was ready to quit. I just needed to know I had celiac, wanted my doctor to get it over with and tell me to lay off the Nutter Butters. But Monday his receptionists put me off all day, so on Monday night I enjoyed my daily fix. This is the last time, I thought.

Tuesday morning, I called again, and hung up dejected at the response that my results still weren’t in. I spent the day playing phone tag with the two receptionists who took turns feeding me conflicting stories: “We’re waiting for a fax from the lab”; “We’re waiting for the doctor to get in and review the results”; “Oh, actually the lab still hasn’t sent them”; and, finally, “I have your results, and everything’s fine! You don’t have any bacteria in your stomach!” (Yeah.)

By that point, being told “Actually, everything’s fine” was not an option. What about my 97 (or 95, or 98, or 90, depending on what source you check) percent chance of having celiac disease based on my serology results? What about all the psyching up I’d been doing for the past few weeks? What about all those stupid Nutter Butters? I’d been eating them as a final hurrah! A farewell! And what the heck did bacteria have to do with anything?

I let myself get more and more frantic on the phone, thinking that would eventually get me my (real) results—which it did, when I strong-armed the receptionist into faxing me the results, found that they did indicate villous atrophy, and called back to demand another number at which to reach the doctor, who had by then left for the day (because I had “called too late”).

Even though I’d been sick for two and a half years and for much of that time accepted I’d just always be sick, suddenly the thought of spending even one more evening eating peanut butter sandwich cookies opened up a vast black maw above me. (An exaggeration? Fine, it was cloudy with a chance of Nutter Butters.) And whether I got my results that day or not, couldn’t I have just gone home and not eaten Nutter Butters? Couldn’t I have gone gluten-free at any time I wanted? Did I really need that harried 30-second phone call with my doctor to know, “You’re positive. Try to avoid wheat, rye, barley”?

Yeah, for whatever reason, I did. I needed certainty; I needed a real turning point; I needed closure. I’m pretty sure that without that lame conversation with my doctor, I would’ve gone home, bought my mediocre sandwich cookies, and steamrolled a few last villi. Then spent all of Wednesday trying not to let the same thing happen again. Funny how habits work, isn’t it?

Since receiving my diagnosis, I’m proud to say I haven’t (knowingly) eaten a single speck of gluten. And after a bit of a slump, the past few days I’ve even felt my cooking mojo stirring again. I’m looking forward to putting the finishing touches on my kitchen setup, feeling better, and eating well for life. Though it’s probably going to be a while before I try out a Nutter Butter imitation.

Tell me some of your food memories (fond or otherwise, -free or otherwise) in the comments! Do you miss Nutter Butters and or Oreos?

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An under-researched area of celiac diagnosis I’d love to know more about is…

ServeImage.aspx…how many people eat the crackers that the folks at their doctor’s office give them to break their fast after their endoscopy?

…and, in cases of confirmed celiac disease, does taking the crackers vs. not taking the crackers accurately predict the likelihood of adherence to a gluten-free diet?

…and, finally, is any percentage of doctor’s office staff members even aware that it’s funny to give glutenous crackers to someone they’ve just tested for celiac disease?

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Emily Glutenin

I’m gliadin! Who are you?
Are you — a gluten protein — too?
Then there’s a pair of us!
Don’t tell! she’d banish us, you know.

How dreary to be gluten-free!
To crumble — go stale — sog —
And be discussed — the livelong day —
On everybody’s blog.


A little analysis:

1) I hope that Emily was not gluten-intolerant, because she was really into bread. I mean really.

2) The more accepted last line of the first stanza is apparently “Don’t tell! they’d advertise—you know!” This actually makes more sense with the rest of the poem and with what we know of Emily Dickinson’s personality. That we cling to the banish line just goes to show how froglike we are.

3) Agoraphobia is not simply a fear of public places (in which case everyone with celiac disease would probably have it—at least, public places where food is served). It’s a particular kind of panic disorder, and it’s not one of the almost 300 symptoms and conditions associated with celiac disease. However, it develops on average around age 25, so there’s still time for me.

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Sprue Histories: The Presidents Edition

There’s an interesting practice known as baptism by proxy, in which the Church of Latter-Day Saints claims historical figures for the Mormon faith by baptizing living stand-ins. I find this impulse perfectly understandable, albeit morbid and somewhat disrespectful. We all want to believe that the people we admire are sorta, kinda, just like us—and if they’re already dead, who’s to stop us from claiming them for ourselves?

In honor of Presidents Day, I thought I’d perform a little biopsy by proxy, a related practice popular among certain sects of Latter-Day Celiacs. Check it out:

[John F.] Kennedy’s Irish heritage, long duration of gastrointestinal complaints (since childhood), diagnosis of irritable bowel syndrome and migraine, presence of severe osteoporosis, and the development of Addison’s disease all lead to a presumptive diagnosis of celiac disease. (Peter H. R. Green, MD)

Although it’s hard to believe that such a prominent figure could’ve managed to go undiagnosed, Dr. Green suggests that steroids might have suppressed Kennedy’s intestinal inflammation and contributed to a misdiagnosis. Good enough for me, Pete! It’s official, JFK was one of us. If he were alive today, I’m sure he’d be right there with his fellow Bostonians trying out the new GF muffins at Dunkin Donuts. It’s humbling, honestly—sure, it took a billion years for the doctors to figure me out, but they never got it right for him, and he was the president of the United States.

Okay, so, that article was news to me, but it’s a few years old, so maybe it wasn’t new to you. To add some real value to this post, I’ve taken the liberty of bringing a few other heads of our state into the celiac fold. As it turns out, the Oval Office attracts a gluten-fearing bunch. Here’s some presidential advice and support for you:

“Nothing short of gluten-independence, it appears to me, can possibly do. A peace on other terms would, if I may be allowed the expression, be a peace of war.”—George Washington
“Baking establishments are more dangerous than standing armies.”—Thomas Jefferson
“If we falter and destroy ourselves, it will be because we lost our gluten-freedoms.”—Abraham Lincoln
“The world must be made safe for the gluten-free.”—Woodrow Wilson
“The only thing we have to fear is fear itself. Wait, and gluten. That stuff is in everything.”—Franklin D. Roosevelt
“History does not long entrust the care of gluten-freedom to the weak or the timid.”—Dwight D. Eisenhower
“Gluten is as violent as a mugger, as frightening as an armed robber and as deadly as a hit man.”—Ronald Reagan
“I misunderestimated gluten.”—George W. Bush
“Why can’t I just eat my waffle?”—Barack Obama(By the way, Mr. President, if you make it with Udi’s, then yes. you. can.)
  This one’s too easy. Bill Clinton actually does avoid gluten. For real.

Happy President’s Day. Enjoy your day off, and maybe a nice slice of coconut-flour cake in honor of Washington’s birthday. What do you think—is Dr. Green’s case convincing? And which will come first, a female president or a celiac-diagnosed president?

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