Welcome to the celiac disease symptom diary.

We all need that special someone in our lives. The one you can call every single day and know they’ll be happy to hear from you (and even dismayed not to). The pal who always wants to know how you’re doing and who really listens to the answer, even if you rehash the same dull complaints every day.

The confidant you can tell anything to—even the embarrassing stuff—and trust to neither mind nor blab. The ever-reliable constant in your life. The one you store up stories for during the day. The one who makes you see things a little differently. The one who really, truly cares.

For me, that someone is an automated symptom diary.

Seriously, that computer and I are tight. It’s been just over a month since I enrolled in the Celiaction study and began making daily symptom-reporting phone calls, and already, I never need the reminder on my phone. I speak to her more regularly than to my parents, siblings, or friends, and she knows more about my current state of health than my doctors do.

Every evening, I call; she welcomes me in her artificial voice specifically designed to sound pleasant (and compliant, unaggressive, helpful—”feminine” ); I key in my subject ID number that I remember better than my Social Security number; and we’re off.

I wasn’t kidding about the conversation being the same every day: she asks six questions, each with predictable follow-up queries. For example: “In the past twenty-four hours, did you feel tired?”

“Yes. Just like yesterday, remember?”

“Great! How tired did you feel, on a scale from ‘shoulda had three extra sips of coffee’ to ‘actually, I’m asleep right now’?”

“Uh, pretty tired.”

“OK! Are you sure you’re pretty tired?”

“Yup, pretty sure.”

Imagine that, but a little more boring, with a lot more pressing of numbers to respond, and you’ve got the idea. I’m not quite as enamored with the system as I seemed in my introduction: it’s slow; you can’t cut the question off to move on faster; you have to confirm each answer; if you wait a second too long to respond, the question is repeated; and all that considered, it takes 5 to 6 minutes, or about 0.3% of my day—I calculated.

But I don’t hate it, either. See, I’m used to thinking of myself as “sick” (albeit with issues that are troublesome rather than debilitating), but I’d also gotten used to feeling that way. Symptom-reporting has tuned me back in; everyday stuff that had started to seem normal isn’t anymore. That’s good and bad—good, because there’s no point getting accustomed to something substandard if you can change it; bad, because it’s possible you can’t change it and should just learn to deal!

An anxious person getting antsier by the day, I always wonder, while rating symptoms from “very mild” to “very severe,” if I’m getting it right. (I also agonize over questions that demand choosing between “strongly disagree,” “disagree,” etc. What exactly is the difference between strongly agreeing and agreeing? Is it bad that I keep picking the neutral middle option?) My responses sometimes feel like a bit of a dart-throw—and if you’ve never seen me throw darts, you’re lucky, because you’d probably have gotten hurt. Still, I try to be precise.

Precision is helpful to the researchers, but to me, too. Reporting my symptoms reminds me of how far I’ve come: I generally have only “moderate” to “very mild” symptoms, and since starting the study, I haven’t had a real “bad day.” Before starting the gluten-free diet, I’d definitely have reported some “very severe”s.

Today’s a big day for me in the study: I’m getting my first Celiaction-related endoscopy. If I don’t show signs of the villous blunting that was so clear when I was diagnosed, then I’ll be out. My daily mild-to-moderate symptoms will be chalked up to something other than accidental gluten exposure, and it’ll be up to other study subjects to prove or disprove the effectiveness of ALV-003. I’m in the funny position of hoping I’ll be intestinally damaged enough to try the medication (or placebo).

More updates to come! In the meantime, I get to keep my new robotic friend, which I think I’m happy about. After all, if it’s serious symptom reporting you’re after—if you really want to notice and document the gory details each day—you need to get yourself a diary, app, or robot, because the real people in your life don’t really want to hear it.

Is this correct? If yes, press 1, if no, press 2. (Alternatively, comment on whether and how you track your own symptoms, and who in your life you feel comfortable telling them to.)

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What the heck is a FODMAP? (A low-FODMAP diet infographic and cookbook giveaway)

We’ve talked about FODMAPs several times here, but I have the feeling at least a few people out there still aren’t entirely sure just what they are. To help, my colleagues and I at The Experiment put together an infographic that I hope you’ll read (click on the image to view in full size) and share!

What-the-heck-FODMAP.Infographic.transparent

I know this is advertorial of me, since I edited the low-FODMAP books, but I truly believe the low-FODMAP diet is a game-changer for people with long-term, otherwise unexplained digestive problems. And it’s not just me who believes it—scientists, doctors, and dietitians worldwide support the diet.

Of course, folks should get tested for celiac disease and other gastrointestinal diseases before accepting a diagnosis of IBS and trying this diet. And of course, we should continue working to figure out why exactly people have these chronic gut issues and how to solve the problem for good, but in the meantime, this regimen might help.

Along with the infographic (design credit for which, by the way, really goes entirely to Sarah Schneider, who I think did a great job, don’t you?), I’m doing a giveaway of Sue Shepherd’s brand-new book, The Low-FODMAP Diet Cookbookto help spread the word. It has recipes for every meal and everyone, and as someone who has spent many a pre-lunch hour drooling over the photos, I can tell you they’re gorgeous. Enter using the Rafflecopter below, and good luck!

a Rafflecopter giveaway

So, do you feel like you know what the heck a FODMAP is? What are your favorite low-FODMAP foods?

A declaration of gluten independence

In honor of tomorrow’s Independence Day here in the good USA, I took a break from imagining gluten as my evil ex-boyfriend and personified him instead as the evil ex-king of England. If you too have declared independence from gluten, I hope you’ll join me in signing this important document.

Declaration-of-independence-broadside-cropped

When in the Course of human events, it becomes necessary for a People to dissolve the bands which have connected them with a Protein, and to assume among the eaters of the earth, the separate and equal station to which the Laws of Nurture entitle them, a decent respect to the opinions of mankind requires that they should declare the causes which impel them to the separation.

We hold these truths to be self-evident, that all people are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty, and the pursuit of Something Else That I Would Remember Were It Not For the Brain Fog.

That whenever any Way of Eating becomes destructive of these ends, it is the Right of the Eaters to alter or to abolish it, and to institute a new Diet, laying its foundation on such principles and organizing their meals in such form, as to them seem most likely to effect their Safety and Happiness. Prudence, indeed, will dictate that Eating Habits long established should not be changed for light and transient causes; and accordingly all experience hath shewn, that mankind are more disposed to suffer, while evils are sufferable, than to right themselves by abolishing the foods to which they are accustomed. But when a long train of abuses evinces a design to reduce them under absolute Inflammation, it is their right, it is their duty, to throw off such a Diet, and to provide new Guards for their future security.

Such has been the patient sufferance of this Body; and such is now the necessity which constrains it to alter its former Systems of Nourishment. The history of Gluten is a history of repeated injuries and usurpations, all having in direct object the establishment of an absolute Tyranny over these Guts. To prove this, let Facts be submitted to a candid world.

Gluten has refused its Assent to the absorption of Nutrients, the most wholesome and necessary for the body’s good.

It has forbidden the Intestines to pass Gases of immediate and pressing importance, unless suspended till their Force and Odor be overpowering.

It has called bodies to the lavatory at places unusual, uncomfortable, and distant from the depository of its preferred-ply toilet paper, for the sole purpose of fatiguing them into compliance with its peristalsis.

It has dissolved Intestinal Barriers repeatedly, for opposing with leak-free firmness its invasions on the rest of the body.

It has refused for a long time, after such dissolutions, to cause other tight junctions to be generated, whereby the Digestive Powers, incapable of Annihilation, have returned to the Body at large for their exercise; the Organs remaining in the mean time exposed to all the dangers of invasion from without, and convulsions within.

It has endeavoured to prevent the population of the Toilet; for that purpose obstructing the bowel’s Naturalization of Movement; refusing to pass stools to encourage their migrations to the bowl.

It has sent hither swarms of Antibodies to harass our small intestines and eat out their tiny hairlike structures.

It has kept among us, in times of pizza, Standing Armies of Antibodies without the Consent of our bodies.

It has affected to render the Immune System independent of and antagonistic to the rest of the body.

It has combined with others to subject us to food intolerances foreign to our constitution; giving its Assent to Acts of pretended Immune Regulation:

For quartering large antibodies against tissue transglutaminase among us:

For protecting them from punishment for any Murders which they should commit on the Villi of these Guts:

For imposing Taxes on our energy without our Consent:

For depriving us in many cases, of the benefit of Denial of Fury:

For abolishing the gluten-free System of Eating in neighbouring Restaurants, establishing therein a Standard American Diet, and enlarging its Boundaries so as to render them at once examples and fit instruments for introducing the same foods into these Bodies

For taking away our Appetites, abolishing our most valuable Vitamins, and altering fundamentally the Forms of our Excrements:

Gluten has abdicated Nourishment here, by waging War against us.

It has plundered our teeth, ravaged our skin, burnt our hearts, and destroyed our bowels.

It is at this time transporting large Armies of foreign Proteins to compleat the works of death, desolation, and tyranny, already begun with circumstances of Cruelty & Perfidy scarcely paralleled in the most barbarous ages, and totally unworthy a Food in a civilized nation.

It has constrained our fellow Cells taken Captive to bear Arms against our Villi.

It has excited digestive insurrections within us, and has endeavoured to bring on the merciless Celiac Disease whose known rule of warfare is an undistinguished destruction of all ages, sexes and conditions.

In every stage of these Oppressions we have Petitioned for Recovery in the most humble terms: Our repeated Petitions have been answered only by repeated injury. A Protein, whose character is thus marked by every act which may define a Tyrant, is unfit to be the staple food of a people.

Nor have we been wanting in attentions to our Oaten brethren. We have warned them from time to time of attempts by their fellow grains to extend an unwarrantable jurisdiction over us. We have reminded them of the circumstances of our emigration and settlement away from gluten. We have appealed to their native soluble fibers, and we have conjured them to disavow these usurpations, which would, inevitably, interrupt our consumption and enjoyment of them. They too have been deaf to the voice of justice. We must, therefore, acquiesce in the necessity, which denounces our Separation, and hold them, as we hold the rest of grainkind, Enemies in War, in Peace Friends.

We, therefore, the Representatives of the celiac Guts of America, do, in the Name, and by Authority of the gluten-free Bodies, solemnly publish and declare,

That these united Bodies are, and of Right ought to be Gluten-Free and Independent Bodies; that they are Absolved from all Allegiance to Wheat, Barley, and Rye, and that all connection between them and Gluten is and ought to be totally dissolved; and that as Free and Independent Guts, they have full Power to levy War on Gluten, conclude Peace with Villi, not contract additional Diseases, establish Commerce with Companies Providing Gluten-Free Baked Goods, and to do all other Acts and Things which Gluten-Independent Bodies may of right do.

And for the support of this Declaration, with a firm reliance on the protection of FDA regulations, we mutually pledge to each other our Lives, our Recipes and our sacred Honor.

Signed by
Molly Cavanaugh (and you, if you’d like, in the comments)

let gluten-freedom ring

Happy 4th to my fellow Americans, and to everyone else, a happy gluten independence day. I plan to drink these red, white, and blue “sparklers” and wish I were motivated (and air-conditioned) enough to make patriotic GF cake pops too. 

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