Tag Archives: symptoms of celiac disease

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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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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If You Give a (Celiac) Mouse a Cookie . . . She’ll Ask If It’s Gluten-Free

I’m starting to get a bit loopy because I still can’t sleep, and it’s been a while since my last sprue redo. So, here’s a children’s book for our generation of rapidly proliferating food allergies and gluten-related disorders—in honor of the one month of the year when we celiac types feel just a bit more comfortable making demands (uh, requests). Enjoy!

If you give a celiac mouse a cookie, she’ll ask if it’s gluten-free.

if-you-give-a-mouse-cookieIf you give her a gluten-free cookie, she’ll gobble it down and ask for a cup of milk.

If you give her a cup of milk, she’ll ask if it’s lactose-free, because her villi are still healing so she can’t produce lactase.

If you give her a new cup of soy milk, she’ll ask if you’re SURE the cookie was gluten-free, because she’s starting to feel a bit glutened.

If you show her the package label, she’ll ask for a mirror so she can check whether her dermatitis herpetiformis is flaring.

When she remembers she never had DH in the first place, she’ll scratch herself all over and say, “But I do feel itchy. Maybe it’s the soy.”

Then she’ll ask for a place to lie down because she feels fatigued. Then pester you for a bedtime story because now that she’s in bed the insomnia’s come on. Then finally drift off and sleep for about, oh, three days.

When she wakes up, if she’s not the smartest celiac mouse, she’ll ask for another cookie.

And since you don’t particularly want any gluten-free cookies yourself, you’ll give her one.*

And here are some cute kids reading the real thing and wondering why the mouse is so demanding. Photo © Matthew Hauck | Flickr

Here are some real kids reading the real book and apparently wondering why the mouse is so darn demanding. (Photo © Matthew Hauck | Flickr)

*No offense intended to the many bakers and manufacturers of delicious gluten-free cookies. In fact, I could go for a delicious gluten-free cookie right now. Couldn’t you?

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Bloated

Do you get “the celiac bloat”?

Spend enough time in the gluten-free blogosphere, and you’re sure to find posts about bloating. Many consider it the first sure sign that they’ve consumed gluten. Some even share photos, as though to prove they aren’t imagining things (which, no doubt, many of them have been told).

Though I won’t be posting a photo, I wanted to share a bloating story of my own. This one’s from the archives: an email I sent to my dad back in 2010.

The only context you need is this: my junior year of college, I lost a third of my body weight. (On purpose, although I kept it going a bit longer than I should have.) Just weeks after hitting my “target” weight, I became very ill.

By the time I wrote this email, I’d started to experiment with what I now see as Band-Aid management strategies. They were helping, but not entirely—and not at all with what seemed to me the worst part.


. . . the thing that’s most upsetting is that my belly is constantly swollen and bloated, and gets progressively worse throughout the day. After I worked so hard to get in shape, now I can’t wear my new clothes because they’re too tight. I haven’t had any days for a while where the pain got as bad as it did those few days, so I’m really only dealing with mild discomfort most of the time (although sometimes pretty bad discomfort by the end of the day). But I just feel depressed and embarrassed all the time about the way I look.

I guess you’ll probably think that I’m noticing it more than other people are, and that’s probably true, but if I wore my fitted shirts people definitely would notice. By the end of the day my stomach is often so distended that I literally look several months pregnant. . . .

I’m afraid this will never go away no matter what I try and I’ll never be happy with the way I look or feel ever again. And I’m trying to gain some perspective because I know I could have far worse troubles, but it just seems so devastatingly unfair that at the time in my life when I should be my most healthy and look my best, instead I get this.

Note: This was originally all one very long paragraph. I’ve made cuts and added paragraph breaks because it was utterly unreadable. Sorry, Dad.


When I wrote this, I was strength training several days a week, “doing abs,” and running almost daily. To have this uncontrollable bloat “ruin” those efforts was frustrating, especially since I was more image-obsessed then than I’ve been before or since.

Back then, I felt I would rather deal with mild and increasingly worse discomfort every day possibly forever than be bloated. It was more important to me to look good than to feel good. Sad, right?

Since then, some of my other symptoms have improved. My weight has gone slightly up and down; I’ve worked out more or less consistently; and I’ve eaten more or less cleanly, on a few different diet plans (omnivorous, vegetarian, low-FODMAP, and now gluten-free). But the bloating has continued. I both feel bloated—that awesome “please just pop me now” balloonlike feeling—and look bloated—just a little, usually, but sometimes a lot.

sad mime holding onto balloons

See? Balloons make him sad, too.
Photo © Jorn Idzerda | Flickr

I’m in a healthier place now than I was then, body-image-wise. But you know what? I still find the bloating unfair (if not devastatingly), and I still find it depressing. Some days, I still want to just stay in bed.

Bloating is one of the symptoms that consistently pops up in descriptions of celiac disease, perhaps because it’s less graphic than the alternatives. But it also affects 10 to 30 percent of the general population, often for unclear causes.

Some people don’t think of bloating as a big deal. “Oh, everyone has that from time to time,” they might say (as a friend did to me back when I first got sick). Protesting that it’s different when it’s every day may or may not penetrate, but it’s true: it is different. Sure, in comparison to other symptoms—including my own!—bloating is mostly just a nuisance. But when it happens every day, it gets to you.

These days, I think of bloating as just one more frustrating aspect of a frustrating illness. One more daily bit of proof from my body that I’m not the boss of it.

One day, maybe, I’ll prove it wrong.

What’s your least favorite symptom of celiac disease or gluten sensitivity? Any good “bloat begone” tips to share?

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