Category Archives: Half-baked theories

Symptomatic celiac disease driving you crazy? Then try CeliAction with me!

“The definition of insanity is doing the same thing over and over and expecting different results.” A whole bunch of dubiously wise people have told me that. The quote’s attributed to every famous smart person ever, usually Albert Einstein, and it has a certain ring of truth. So I hope you won’t blame me for wondering . . .

Am I insane?

If Albert Einstein said it, it must be true.

If this guy said it, it must be true. (Psst: he didn’t.)

I’ve been dutifully eating gluten-free for nearly a year and a half. But despite saying no to wheat, rye, barley, and even oats over and over again, I’ve seen so little improvement in my health that celiac disease is starting to seem like a sick joke. I can’t help but wonder: Are all those people who claim to recover just punking me? Are you? Is it crazy to continue a rigid, socially hobbling diet without any signs that it’s working?

Luckily, when these questions were threatening to make me really insane, I found a great Psychology Today article dismantling this “definition of insanity.” Ryan Howes argues that many use the cliche as an excuse to avoid the long-term, difficult, and sometimes thankless work of self-improvement. They confuse perseverance—a “strong, valuable quality”—with perseveration, a particular psychological issue. Howes writes:

Repeating the same constructive behavior over and over, hoping (one day) for a positive result is difficult but virtuous. . . .

Perseveration feels compulsive, hopeless, helpless, automatic and unsatisfying. There is a desire to stop, but stopping doesn’t feel like an option. Perseverance feels like striving toward a noble goal, and whether or not it’s reached . . . there is virtue in the effort.

Now, I can’t say that avoiding gluten never feels compulsive, hopeless, helpless, automatic, or unsatisfying. But usually, I feel I’m doing something constructive in hopes of (eventual) better health. The day-to-day results may be nil, but I won’t be giving up my diet anytime soon.

On the other hand, just as it’s not crazy to keep striving in the same way for a noble goal like health, it’s also not crazy to try something new. If you aren’t seeing as much progress as you’d like, it’s a good, sane idea to take extra steps that might help you reach your goal and keep you from going nuts along the way.

That’s why I’m excited to report that I have enrolled in the CeliAction Study!

The CeliAction Study is testing ALV003, a medication intended to break gluten into pieces too small for the immune system to recognize. Even careful people like you and I probably get trace contamination; this drug may keep our immune systems from punishing us for it. It’s worked in a test tube, and only science will tell whether it works in humans.

Now, I don’t believe in medicating problems that have effective, simple, non-pharmaceutical solutions. But I do believe in medicating everything else. If the gluten-free diet were good enough for everybody, I’d be shaking my head at those money-grubbing drug companies with the judgiest of ’em. But for many, it isn’t. I believe that developing new therapies for celiac disease is a necessary cause, and I look forward to supporting it. If you’re interested, I invite you to join me!

You can enroll if you have celiac disease, have been gluten-free for a year, still have symptoms, and are close enough to one of the many study locations (see contact info for the Columbia location here). You’ll continue on your gluten-free diet and do a few other things over the course of 28 weeks:

  • Get bloodwork and endoscopies done toward the beginning and end (fo’ free)
  • Call a special system every night to report on your symptoms (then drift off to sweet dreams about satisfying bowel movements)
  • Stir the powdered medication into a beverage and drink it at each meal
  • Not get pregnant
Only 30% of participants get the placebo, so odds are OK you'll be stirring the real thing into your water glass. (Photo © Dennis Skley | Flickr)

Only 30% of participants get the placebo, so odds are OK you’ll be drinking the real thing. (Photo © Dennis Skley | Flickr)

Like another infamous study, it’s placebo controlled (and double blind), so you won’t necessarily get the drug, and either way you won’t know. You also have to show ongoing intestinal damage in the first endoscopy to be given the drug or placebo. But IF you get the drug, and IF it works, THEN your quality of life might improve.

If those ifs don’t work out, at least you get to be one small cog rolling forward the machine that is scientific progress. Plus you get paid (cha-ching!), and if you’re loving the drug at the end, you get to keep taking it for a while. (Unclear whether that holds if you’re on the placebo. But hey, if the placebo works I’ll take it.)

It’s quite possible I’ll hate the phone calls by the end of the study, and maybe I still won’t feel better. Maybe I’ll feel crazy for having gotten myself into this.

But mostly, I hope, I’ll be happy that I’m persevering toward my noble goal of better health. And if you’re still striving for it yourself, I’ll appreciate the company. Us crazy people gotta stick together.

Does managing a special diet ever make you feel a bit insane? What new things have you tried in pursuit of health? Are you considering the CeliAction study?

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What Does the Box Say? – Comparing Gluten-Free and Non-Gluten-Free marketing claims

We’ve all heard statements like these about gluten-free food: “The gluten-free products market is experiencing a double-digit growth” and “They are considered healthier than conventional products (source: PRWeb.com).

It’s become a truism that manufacturers make gluten-free products to cater to the “fad,” rather than to help those of us with gluten-related disorders (GRDs). According to this perspective, gluten-free, like organicall natural, and wholesome, is just another buzzword. 

Marketers seek to draw in people without GRDs who are health-conscious enough to buy a product they think is better for them, but not enough to realize it isn’t, really. (The same thing might be coming for “kosher.”) Marketing research, as presented in this report—the complete version of which sells for an astonishing $3,995.00—backs up this idea that “health perceptions fuel [the gluten-free] category growth.”

Is it true? Just who do marketers think gluten-free consumers are, and what do they think we want? Are GF labels crammed full of more health claims than other products? Are they feeding us all the nonsensical health claims they think we’ll swallow?

To answer these questions for myself, I did some amateur market research, looking at what marketers are putting in their gluten-free (GF) product descriptions and their non-gluten-free (NGF) product descriptions. Then, I created tag clouds showing the most common words and phrases for each:

Looking these over, I’m come up with some conclusions of my own. I’d love to hear what stands out to you, too!

The method to my madness:

  • I researched descriptions of both gluten-free (GF) and non-gluten-free (NGF) products. Note that the sample size is small—just under 60 products in each category—and that I used copy from manufacturers’ websites, rather than package labels themselves, because I’m lazy. Pay me $3,995 and I will redo it. For a full list of the products I included, click here.
  • I looked only at brands with exact gluten-free and non-gluten-free equivalents. (Thanks to Sprue Jr. for this smart idea.) I left out things like Goldfish Puffs (which are yummy, but more like Cheetos than Goldfish), Nabisco Rice Thins (which I really hope aren’t meant to imitate Wheat Thins), and Chex (even though it’s the classic mainstream-product-gone-GF; wheat, rice, and corn Chex are just too different).
  • I created the word clouds using tagcrowd.com. A word or phrase had to appear 4 times across all descriptions in a category to make the cut. The NGF cloud is smaller than the GF cloud because fewer words were repeated often enough.
  • At 33 mentions each, the outliers “gluten free” and “gluten-free” (who knew the food industry was so divided on the hyphenation question?) were taking over the whole GF picture, so I removed them.

A few general observations:

As a vegetarian, I had no idea till doing this just how many brands of GF breaded chicken products exist. Mind. Blown. You’d think someone could take a break from dinosaur-shaped extruded meat to manufacture some GF phyllo dough.

Some classic, mass-market products reproduced in gluten-free versions are presented with almost identical product descriptions, distinguished only by the addition of “Now available gluten-free!” In other cases, the gluten-free product information is considerably longer, taking great pains to explain a) why a gluten-free version was created, b) what steps have been taken to ensure the product is gluten-free, or c) both. The NGF versions were very rarely longer, probably because we already know those foods rock.

Many food manufacturers making GF products were already focused on whole grains, organics, etc., which in my opinion partially contradicts the claim that everyone’s getting into the GF game to make money. These are companies that already cared about health and want to include former customers, now gone GF. Whether their products really are good for us is another question.

Poptarts aisle

Poptarts: not yet gluten-free, or healthy.
Photo © MTSOfan | Flickr

Now, on to specific claims:

GF food tastes good, kinda.

To give the GF labelers credit, many of them call their products “treats.” They promise that “everyone” will “enjoy” or even “love” their foods’ “delicious” “flavor,” “taste,” and “texture” (on the last point, they may protest too much—the word doesn’t appear in the NGF cloud, because it doesn’t have to).

“Best” and “favorite” make the cut for GF (but not NGF) foods, though they’re slightly more wary about claiming to be “classic” or “traditional” (several GF products went for “unique,” instead, which could mean anything). NGF foods are apparently “easier” and more “fun” than GF ones, but then, we already knew that.

GF foods are good for you, kinda.

First, let’s take a moment to appreciate how silly it is that health claims like “all natural” are so prominent in both sets of product descriptions, considering that every one of them comes in a package, box, or bag. A recent comment by a reader, John, sums up my feelings on this topic better than I could myself, so check it out.

So, GF and NGF foods are about equally likely to call themselves “healthy,” though the GF foods throw in a few “health”s for good measure. GF products are way less likely to be “organic,” and also less likely to claim to be “all natural” (or even partly “natural”) or to avoid “fillers” and “preservatives.”

On the subject of “fats” and “trans fats,” as well as specific “grams” per serving of the good stuff, the GF products are silent compared with their NGF counterparts, though not necessarily because they’re worse. (This has been discussed here and here.)

With nearly as much frequency as NGF products, GF products reference “whole grains,” but the oversized “brown rice” tag signals that’s the primary whole grain being used; too bad, because it’s lower in several nutrients than the whole wheat that dominates in NGF foods.

Neither set of products makes many caloric claims, probably because these terms are closely regulated so pizzas, cookies, and pretzels can’t get away with claiming to be low-cal. Only the GF products admit to being “sweetened” (though the NGF ones are, too!).

GF foods are gluten-free, kinda.

A fair number of the GF products point out their “certified” status and make explicit claims about the safety of their “ingredients” and “dedicated” “facility” where “products” were “produced.” A handful even reference “celiac disease”—yay!

Others, though, are mentioning their facilities and so on to warn us that they aren’t dedicated. So take this one with a grain of salt, produced in a gluten-free facility.

GF foods are far more likely than NGF foods to mention freedom from allergens such as eggs and dairy (and wheat, mentioned more on products where it’s not than where it is). I don’t mind manufacturers killing two (or more) “allergies” with one stone; in an age of multiple allergies, it’s a smart move.

produce aisle

Where are the labels? Are these healthy? Gluten-free? Who knows?!
Photo © I-5 Design & Manufacture | Flickr

Shocker!

At least in this sample, the GF foods don’t seem to trumpet health more than their NGF counterparts, other than freedom-from claims. I was also surprised not to find the words “crave” or “craving” in the GF cloud, since that’s the essential function of these foods: to satisfy that yawning hole left in all of us by the Oreos, pizzas, birthday cakes, and chicken nuggets of yesterday.

Which similarities and differences surprised you? Are any words missing that you’d have expected to see? Do you buy gluten-free food products, and if so, what do you look for on the package labels?

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When is your health like a plugin? – On diagnosis, technical difficulties, and Band-Aids

Is there anything more annoying than technical difficulties? Technology is meant to quietly smooth the course of our daily existence; it’s a fact of life that we take for granted—even ignore entirely—until it starts to go wrong.

Well, maybe one thing: health problems. A healthy body is similar to working technology: it’s a neutral backdrop to our activities, a nonintrusive vessel for our thoughts and cares and aspirations. No one rejoices in their eyesight till they start to lose it. No one revels in their ability to sleep until insomnia strikes. No one praises their guts for breaking down food until the guts themselves break down. I certainly never realized how healthy I was until, one day, I wasn’t.

Once difficulties begin—with our technology or our health—we realize how essential its function was to our former happiness. And so begins the search for solutions. Step one? Diagnosis.

laptop keyboard and stethoscope

What seems to be the problem?
Photo © jfcherry | Flickr

The first definition of diagnosis, according to good ole Merriam & Webster, is “the art or act of identifying a disease from its signs and symptoms” (and for a good read on the “art” of diagnosis, I highly recommend Every Patient Tells a Story, by Lisa Sanders). But the third definition, “investigation or analysis of the cause or nature of a condition, situation, or problem,” is applicable to technology. That’s why you’ll hear IT people toss around the terrifying phrase “running diagnostics.”

Over the Christmas break, I moved my little baby gluten blog from WordPress.com to a self-hosted site, with some pro bono help from my computer-programming big brother. Although I like the freedom that gives me to, oh, throw affiliate links at you (not that I have, yet), there’ve been growing pains: I’ve had to diagnose and fix several technical issues since the transition.

With a self-hosted blog, you’re the one responsible when problems strike. You’re the patient and the primary care physician. Unfortunately, in my case, you’re a rather bumbling one who looks everything up on Google. The most you can hope for is to pinpoint the general source of the problem and refer yourself to the right specialists.

My latest “symptom,” as some of you are aware, arose this week. Several of my old posts—from June, September, and October 2013—were resent to my subscribers. Everyone who said anything about it was very nice—thank you!—but I felt bad about the spam.

Putting on my doctor hat (is that a thing?), I determined the problem was with Jetpack, the plugin that brought all my old subscribers to my new site without their having to resubscribe, which has been overall handy. A “Happiness Engineer” from their support team let me know they were looking into the problem. In the meantime, I could stop the emails by deactivating the plugin.

band-aid on finger, laptop trackpad

I’m also familiar with real Band-aids on my real fingers. I should not be allowed near sharp kitchen implements.
Photo © Tony Kwintera | Flickr

This type of solution—“We don’t know what’s wrong, but here’s a Band-Aid to get you by”—is depressingly familiar to me from my years with a diagnosis of IBS and, unfortunately, continues to be familiar. “Issues that haven’t gone away after nearly a year gluten-free could be connected with celiac disease; they don’t seem to be connected with anything else; and it might help if I try . . .,” etc.

I obediently applied my blog Band-Aid and emailed subscribers that the problem was fixed. Almost immediately, of course, the “deactivated” plugin emailed out yet another post (the robots really are coming for us). That’s familiar, too. Band-Aid remedies don’t work when there’s a deeper, undiagnosed problem.

Eventually, I received another email from Jetpack: “We’ve now fixed the issue. . . . Sorry again for the inconvenience.” Why it’s fixed, or what went wrong in the first place, I can’t say. My blog doctor clearly subscribes to Sigmund Freud’s belief that “The doctor should be opaque to his patients and, like a mirror, should show them nothing but what is shown to him.”

(Note: the word diagnosis derives from diagnoskein, meaning “to know thoroughly.” Generally it’s not just the doctor who gets to know. But Freud’s been wrong before.)

Lego doctor with laptop

The blog doctor will see you now (but you won’t see him).
Photo © Jay Reed | Flickr

Opacity aside, a diagnosis was apparently made, because the fix is in. Subscribers should—fingers crossed—be able to expect no more unwanted emails from my blog (which is why you should subscribe now, if you haven’t yet!).

Granted, if we sustain the health analogy, this is a bit like saying, “The doctors say I won’t keep projectile vomiting at random times without any warning, so you should be able to sit with me at lunch,” but once we’re discussing vomit I’d say it’s time to drop the metaphor, wouldn’t you?

Tell me—which do you find more frustrating: diagnosing health problems, or diagnosing technical problems? Do you find people take their good health for granted? And what’s all this about doctors being mirrors?

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Hoppin’ John, collard greens, gluten-free cornbread, and the luck we make for ourselves

I’m back, and I hope you’re not all “New Year, New You”-ed out, because I’ve still got New Year’s on the brain. Don’t worry, I won’t talk about resolutions. I want to talk about luck.

December 31st is almost inevitably a day of regrets: most of us are proud of some accomplishments and pleased with how some things worked out, but less thrilled about others. It’s a lucky person indeed who can look back at an entire year with approval.

I, for example, am happy I started and kept up a blog, but I wish I’d written more fiction. I did some fun stuff, including in the celiac community, but I ought to have taken advantage of more of the cultural opportunities New York has to offer. I’m glad I got celiac figured out, but I probably should have made time to go to the dentist. You get the idea.

January 1st is a day to put behind us all the failures and disappointments of the previous year, and, perhaps, the previous night. New Year’s Eve is among the most hyped holidays of the year, but I find it’s usually a letdown.

Angostura bitters and Dominos sugar cubes

Not pictured: the bubbly, which is gone. By the way, if you like trivia, the reason the Angostura label is too big for the bottle is explained here.

This year, it started off well with “classic champagne cocktails” (sugar cubes, Angostura bitters, and lots of bubbly) at a friend’s home, but it ended at a “warehouse party” in Brooklyn that got shut down by the fire department at 11:37 (cruel), watching the ball drop on TV in a random bar, and leaving just past midnight to trek home on the train with only Butterfingers for consolation.

After that, I was more ready than ever for my customary New Year’s Day celebration. I’m honestly not a superstitious person, despite my love of astrology. But a few years ago, I discovered a list of foods considered lucky to eat on New Year’s Day in various cultures. Though I didn’t grow up eating lucky foods on New Year’s Day, I’m a “make new traditions but keep the old” kind of girl, so I decided to pick up the custom.

This year was, as Sprue Jr. dubbed it, “the third annual traditional down-home Southern New Year’s Day meal cooked by wannabe New Englanders,” consisting of:

  • Hoppin’ John, a black-eyed peas and rice dish, lucky because the beans’ swelling represents prosperity (less lucky because we made ours vegetarian and missed out on the extra luck benefits of pork or ham)
  • braised collard greens, made in the slow cooker with leeks and garlic, lucky because greens are…green…like money
  • cornbread, lucky because it’s gold, like money (sensing a trend?), and extra traditional because Southern-style cornbread includes little to no wheat flour, given its former scarcity in the region
  • grapes and pineapple for dessert, because we got lazy, and because grapes are eaten for luck at midnight in Spain. Plus, pineapple is gold, like cornbread, and money.

We were a bit unlucky with how long the rice took to cook (I still don’t understand why), and our grapes were a bit sour, which apparently is a bad sign. But the meal, though delayed, was overall delicious. I felt lucky to have plenty of food to cook and share, and good friends with whom to enjoy it.

Althea, David, and Alex (friends)

Everyone wore their most festive gray sweaters. (Lucky, because it’s the color of quarters?)

Will it bring us luck for the rest of the year? Maybe. One last good omen is to have leftovers of your Hoppin’ John, which then gets called Skippin’ Jenny. Don’t ask me why—no one even knows why it’s called Hoppin’ John. Leftovers demonstrate frugality, which is sure to increase prosperity (according to tradition, if not to some economists).

Sprue Jr. and I just yesterday polished off the last of the Skippin’ Jenny, so we must be pretty lucky. But, we purposefully made more food than we could eat, in order to have leftovers. So if anything, we made that luck for ourselves.

friend serving herself vegetarian Hoppin' John

Not pictured: the pot of Hoppin’ John, which my food photography talents are not equal to portraying in a decent way.

In my opinion, it’s often that way, with luck. As the owner of a chronic disease, I won’t say that there’s no such thing as bad luck. But I do think we can, at least sometimes, set ourselves up for “lucky” things to happen. (And many psychologists agree!)

I felt unlucky after my party was a bust, with not so much as a refund of the tickets (thanks, Rubulad). But the night might’ve gone better if I’d settled my plans sooner and nabbed tickets to a different, quickly sold-out, event—or if I’d bounced back more quickly after the party’s premature demise.

Sure, bad things will always happen. But by adjusting plans and perspectives, we can bring ourselves more of the good stuff. It’s too late now to cook a New Year’s Day meal for 2014 (though you should try Hoppin’ John anyway, if you never have), but you can still make sure you have a lucky year. If you’re gluten-free, for example, you can choose wisely when you go out to eat or shop to avoid unlucky glutenings. In any area of life, putting in some effort and putting on a smile might bring us all the luck we need. 

So, a little belatedly, here’s to 2014. May it bring you good luck, good food, and good times—and may you help make darn sure it does.

Do you agree that we make our own luck? Do you celebrate New Year’s Day or Eve with traditional foods? And did you make any resolutions this year?

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