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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Hack your celiac! (This new app, CeliacCare, might help.)

You may have noticed there are a few things I hate about celiac disease. For example, how long it takes doctors to figure us out. The amount of time we spend lost in the logistical maze of insurance claims, referrals, and screwups. The premium we shell out to feel safe, and how long it can take to get better no matter how safe we’re trying to be. I could go on, and I bet you could, too.

Although there’s plenty of good stuff to say about having this particular disease, with its primarily dietary treatment, during what will no doubt go down in history as the golden age of gluten-free, there’s a lot that could be better. Some doctors’ standard of care for the newly diagnosed still consists of this:

. . . leaving patients unsure where to begin and what, if any, followup care they need. With luck, they stumble across good sources of information, but the less fortunate get mired in muck.

The word “hack” has come to mean finding a clever solution to a tricky problem—and living with celiac disease is definitely that. So, can we hack it? Is there, perhaps, an app for that? In fact, Clay Williams (who I met at the Columbia conference I attended) is about to launch one. It’s called CeliacCare, and Clay was kind enough to answer a few of my burning questions about it.

What is CeliacCare, and why should we be excited about it?

CeliacCare is an application that provides support for the full set of activities someone living with celiac disease needs to undertake to manage the disease and maintain good health. The app helps patients manage the day-to-day aspects of the disease, and ensures they are connected to and supported by their doctors and dietitians.

CeliacCare helps you manage celiac disease through four broad components, which are available on both the mobile app and in the patient portal.

appScreenLearn lets you stay abreast of new information about celiac disease and its treatment. This section includes curated material from a variety of celiac disease sources, as well as information that your doctor and dietitian can share with you directly. The information is richly tagged, so you can easily find the latest info on a given topic.

Eat helps you maintain a resource list of favorite things you like to eat, find new gluten-free recipes that are aligned with both your dietary preferences and other sensitivities, and find places to eat out. Our search engine even allows you to locate recipes based on your mood or your desire for a particular food. So, if you’re a bit stressed and you’re craving something crunchy, we can find something yummy for you! We also provide a food diary to help you plan meals and keep track of what you’ve been eating. You may not want to keep a diary all of the time, but making it easy to track things when you need to keep a closer eye on your diet is one of our key goals.

Monitor allows you to keep track of any symptoms you have. Experience has shown that patients who are asked, “How are you feeling?” often answer based on their experience over just the past few days. If you see a doctor or dietitian only once or twice a year, they may not get the whole picture. Tracking and sharing symptoms with a doctor or dietitian will give them a much clearer view of the symptom history of your disease. While the app makes it easy to report a symptom on your own, a particularly novel feature of the app is the ability for a doctor or dietitian to provide special monitoring assistance by running a protocol. When a protocol is run for you, you will automatically receive occasional in-app notifications containing questions or messages from your doctor/dietitian. These assist you in tracking important information that helps them to understand your day-to-day state better.

Care assists in planning visits to your doctor or dietitian. An important aspect of celiac disease management is ensuring you have an ongoing connection with those providing you care. Because your visits may be infrequent, it’s important that you cover everything necessary to maintain good health. Our application automatically provides you a completely personalized agenda for your visit—based on your current disease status, your symptoms, your food diary, and topics that you have added on your own.

CeliacCare is the first app to come out of your company Cohere Health Technologies. Why did you decide to start with celiac disease?

It was the alignment of two different factors. First, I have two friends who have celiac disease, so I’ve seen their challenges firsthand. Second, we had a partner in the recipe space who wanted to address conditions that had a dietary component, and celiac is a good starting point, because gluten is a known culprit. It seemed like the perfect starting point to build capabilities that will both help people with celiac disease and provide a basis to address other dietary issues and sensitivities.

Will CeliacCare also be useful for people with non-celiac gluten sensitivity?

Yes! Features like the sophisticated recipe search, the symptom logging, and the learning areas are broadly applicable. If people with gluten sensitivity are seeing a doctor or dietitian, the care planning feature is also quite helpful.

Some hospitals have systems that allow online communication between patients and doctors (for example, I use Weill Cornell Connect). Do you see CeliacCare as a complement to these systems or a replacement for them?

We are complementary to these systems, and we have designed our platform to make it easy to share information with and receive information from other electronic health technologies. Ultimately, the win for patients is for us to provide novel capabilities that integrate in positive ways with other tools in the healthcare ecosystem.

“Fragmentation” of medical care is annoying. I go to one doctor who says, “You should talk to X doctor about this,” but that doctor says, “It’s more a question for your Y doctor,” who in turn directs me to Dr. Z. Is this app going to help fix that?

This is indeed an annoying issue, and unfortunately isn’t an easy one to solve in a single step. However, Cohere Health is hoping to help with this and other issues of care coordination. The starting point is to get you and all your health-care providers on the same page. Our disease-specific applications are a significant step in this direction. An even more challenging issue is to get doctors who are treating different conditions to coordinate care. A rising percentage of the population is contending with more than one chronic condition. At Cohere Health, we are working to provide an integrated experience when people are using multiple of our applications that are addressing care for different conditions. Through this integration, we will provide a seamless set of capabilities that are personalized to an individual’s specific health challenges.

According to your Cohere site, you plan to “glean useful insights for chronic disease treatment from a variety of health data sources, including [your] apps.” Should people who use CeliacCare have any privacy concerns?

No. Our goal is to build the most patient-friendly application possible, and this means two things. First, CeliacCare is fully HIPAA compliant, meaning your data is encrypted during both transmission and storage, and cannot be shared without your permission. Second, your data belongs to you, meaning that only you decide whether you want it available to medical professionals who might gain insights from it, whether you want to opt out of sharing at any point, or if you want to fully remove it from our system at any time.

When can we get the app? On what devices?

We plan to launch mid-summer on both iOS (Apple) and Android devices. The app will be available in the Apple App Store and on Google Play. You can sign up at www.CeliacCare.com to be notified when it comes out.

Very important: what are your personal favorite gluten-free foods?

I grew up on a farm, and we always had a garden in the summer, so I am a huge fruit and vegetable hound. I like almost every kind of fruit or vegetable, but summertime brings up thoughts of watermelon. When I was about eight years old, my dad was one of the largest growers of watermelon in the nation, and I’ve always thought they tasted like summer. A favorite recipe involving watermelon, cheese, and fresh herbs is available here.

Readers, Clay has some questions for you, too—he’s inviting patients and docs to give feedback to help make the app the best it can be. Check out the website to share your thoughts, and feel free to share a few of them here, too. Do you use any health-related apps already? What clever means have you devised to hack your celiac?

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What’s the best time of year to be gluten-free? You tell me!

Many folk singers, including the late great Pete Seeger, have told us that “to everything there is a season, and a time to every purpose under heaven.” Much of the song is paraphrased from Ecclesiastes in the Bible, which goes to show how old the sentiment is. However, though there may indeed be a time to be born, a time to die, a time to dance, a time to mourn, a time to reap, a time to sow, and so forth, for many of us, it’s never time to eat gluten.

Still, as winter waned, spring started and stopped, and my second gluten-free year got well underway, I began pondering whether there’s a best time to be gluten-free. Spring flicked by too fast, the weather settled in to what is unmistakably New York in summer (complete with everyone’s favorite smell of trash in the streets and non-air-conditioned 1 trains), and I made my plans for yet another move* (my fourth in three years, not counting sublets)—and I kept wondering.

I’ve tried to answer this important question by listing a few pros and cons for each season, and I hope you’ll chime in, too.

Spring

  • PRO: The first hints of warmth get everyone out of the house and luxuriating in the sun, happy to do activities besides sit inside and snack.
  • CON: Often enough people really just want to sit outside and snack.
  • PRO: May is Celiac Awareness Month, infusing the entire season with a sense of our own visibility and significance.
  • CON: That sense might be a teeny bit inflated.
  • CON?: St. Patrick’s Day is not so good in its focus on beer, and Irish soda bread needs a makeover, but at least potatoes are gluten-free.
  • PRO?: We’ve already talked about Easter and Passover (both obviously super gluten-free); and Lent, immediately preceding Easter, is fine for those who observe it because gluten-free folks are adept at giving stuff up.
  • PRO: My birthday is in May! That’s relevant because a slightly disproportionate number of us have birthdays in the spring and summer. Birthdays are a good reason to make everyone eat gluten-free cake with you.
  • PRO: Fresh produce is naturally gluten-free! Go to a farmers market!
  • CON: Farmers markets all have baked goods that you can’t eat, too. But hey, you’re being healthy.

Summer

  • PRO: Lots of ice cream brands are gluten-free, and there are new dairy-free, etcetera-free options popping up all the time.
  • CON: There’s no con related to ice cream (as long as you aren’t asking your waistline).
  • PRO: It’s too hot to eat anything besides ice cream anyway, right?
  • CON: Wrong.
  • PRO: There aren’t a lot of holidays to worry about (that I can think of).
  • CON: The holidays that do occur are celebrated via cookout, which can be okay, sure, but often leave this celiac vegetarian eating chips and salsa.
  • CON: You have to move*! In the summer heat! From one fourth-floor walkup to another! Why, oh why did you buy so many kitchen appliances and bulk boxes of Bob’s Red Mill pantry staples?
  • PRO: The above con miiiight only apply to me.

Fall

  • PRO: It’s the perfect time of year to visit the approximately infinite number of gluten-free bakeries that are appearing right and left (at least in the New York metro area).
  • CON?: This doesn’t actually affect me anymore (boohoo), but I imagine that for gluten-free students and their parents, back-to-school time—with its return to school cafeterias, class parties, and 504 plans—is more a con than a pro.
  • PRO: Pumpkin is the gluten-free and vegetarian gods’ gift to the world, and you can put it in everything without being judged in October.
  • CON?: Serious holiday season is starting again. That said, Halloween doesn’t have to be so bad, considering that most candy is straight sugar and fat, no gluten required. And Thanksgiving…well, I’m sure you’ll be so busy being thankful for all the good stuff you’ll hardly even notice your chronic illness.

Winter

  • PRO: Everyone goes straight from home to work/school back home. It’s too cold to socialize, so who cares what you can or can’t eat?
  • CON: Even gluten-free people get lonely.
  • PRO: Hot chocolate doesn’t need gluten to be good.
  • CON: Some sneaky manufacturers put it in anyway.
  • PRO: Snow is gluten-free. (Probably.)
  • CON?: Did I say fall was serious holiday season? Scratch that, winter is. But you can still have a great holiday season and be gluten-free as long as you take proper precautions and avoid spilling any of your tear drops on the “real” sugar cookies.
  • PRO: Soup! Every! Day! I miss it already.

Whether you’ve been eating a special diet for decades or days, when do YOU think it’s easiest, most satisfying, least painful, and/or particularly delicious?

*Yes, you heard right: I’m leaving one gluten-free apartment for another, and Sprue Jr and I are parting ways: she to the Bronx, and I to the Upper East Side. It’s ostensibly to make both of our commutes better, but calling her Sprue Jr all the time might have contributed. By the way, I’m looking for a GF subletter in one of my two bedrooms for July and August, so if you know someone looking, send ’em my way. It’s a walkup, yes, but it’s a great spot near the park (good for those summer picnics) and has two bathrooms.

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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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