Tag Archives: gastrointestinal symptoms

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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20 Ways a Gluten-Free Diet Prepares You to Be the Best Mom or Dad Ever

It occurred to me as I was dutifully packing my own lunch the other day that I’m getting pretty good at this. Maybe not Pinterest good, but I could definitely do a bento box. I’m totally ready to be someone’s mom!, I thought.

I started wondering what other overlap my GF lifestyle has with parenting, and I came up with quite a list. Can you relate?

  1. You pack lunches every day (“love you” notes to yourself probably not included, but I bet you’d rock it).
  2. You’ve lost all discomfort discussing and dealing with poop. Accidents (and maybe vomit) included.
  3. You plan ahead—obsessively—in often vain attempts to prepare for all eventualities.
  4. You spend a significantly larger portion of each day feeling stressed than relaxed.
  5. Looking and feeling pregnant are not foreign to you. (However, if reports are true, no celiac-induced pain you’ve experienced rivals childbirth. Comforting?)
  6. You cook three meals a day, not (necessarily) because you like to, but because someone has to.
  7. You grapple with preparing single meals that satisfy a group of people with completely different wants and needs (allergies, vegetarian/veganism, low-carb, paleo, lactose intolerance, likes and dislikes, and of course gluten-freedom).
  8. You document everything, even the most insignificant milestones: First gluten-free homemade flour blend! First from-scratch cookies! First time eating out! First holiday!
  9. You carry snacks in your bag (and sometimes baby wipes—nothing gets gluten off like ’em).
  10. You’re always tired.
  11. You just know when someone is lying to you (though sometimes after the fact).
  12. You shamelessly ask people to wash their hands before eating. (Only if you’ll be sharing finger food after they just ate, say, fried chicken in front of you. And, okay, there’s a bit of shame.)
  13. You’ve also been known to ask suspiciously, when someone last brushed his/her teeth.
  14. You take grocery shopping very seriously . . .
  15. and keep an eagle eye out for deals. GF food’s not cheap!
  16. You understand the importance of a good burp.
  17. You’re used to not having much of a social life outside of your home.
  18. You’re extremely familiar with saying “no.”
  19. The first thing you look for in any new place is the bathroom.
  20. Sometimes, you can’t remember what life was like before all this. And if a cure is discovered within your lifetime, you’re not totally sure you’ll know what to do with yourself.

See? Child-rearing and chronic disease, two of life’s enduring mysteries, are essentially the same. Both look just . . . like . . . this (with Snyder’s of Hanover GF pretzels, of course):

Yes, I focused on one particular set of symptoms (that is, mine), which many people with gluten-related disorders may not have; there’s a laundry list of other possible symptoms, including infertility (which makes becoming a parent a bit tougher, though certainly not impossible).

And, yes, there are some ways in which they differ. For example:

  1. GF bread prices and loaf sizes being what they are, you do not cut off the crusts.
  2. Celiac disease doesn’t demand bedtime stories—though I’ve got you covered if it ever comes up.
  3. Strollers and playgrounds are also optional.

There’s one more, utterly crucial distinction: When you yourself are gluten-free, all that extra energy you expend and stressing you do are about YOU. Taking responsibility for your own well-being is admirable (and, for many of us, critical), but as a parent you must take that endless worry, attention to detail, and physical and emotional care and turn them outward.

If it’s your child who eats gluten-free, you already understand that. For those of us who aren’t yet but may become parents, assuming a cure doesn’t come, we’ll continue to manage our own diet while caring for the tiny human beings in our charge. We’ll be taking the “tired” we feel and doubling it, at least.

That, more than anything on the list above, makes parenting sound pretty intimidating. From what I hear, though, it’s pretty fulfilling work—so if anything is stopping you from having kids, I hope celiac disease isn’t it. Some (far-off) day, I won’t let it stop me!

Am I missing anything on my lists of similarities and differences? Parents, did I get any of this right?

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SISTER (CELI)ACT: two sisters, one diagnosis, zero gluten

This is the first of three guest posts by my sister Althea. (At least, she thinks it will only be three posts…) Enjoy!

Faithful followers of Based on a Sprue Story may remember me as the benevolent sister who agreed to forgo all glutenous foodstuffs (as well as anything that may have ever come into contact with a glutenous foodstuff) in her own home, out of respect for Molly’s dietary needs (and neuroses). What a thoughtful, altruistic sister, you likely thought. That’s what I thought, too, when we first made plans to get an apartment together.

There must be an Udi’s version of this by now, right?
Photo © Tamara Evans | Flickr

Just days before boarding the trusty old Lucky Star (may she rest in peace), however, I learned that I also have celiac. But there’s a twist. (No, not one of those donut twists, or the twist in your stomach, dear reader, at the mere thought of one of those donut twists—just a twist in the story.)

The twist is, I did not suffer for years from mysterious symptoms before getting this diagnosis. Sure, I had had some mild GI trouble from time to time over the past year or so, but everyone gets constipated once in a while, right? I was probably just eating too fast. Or drinking too much coffee. Not enough coffee? (Do yourself a favor and click on that last link—but only after you’ve finished reading this post.)

Me chopping parsley (a naturally gluten-free food) in preparation for our housewarming party (details to come).

In fact, I bet I would have ignored the issue entirely if I didn’t have such a good little awareness-raiser for a sister. Said sister urged me to get tested for the sprue (which, as my case illustrates, all  immediate relatives of a celiac should do, regardless of symptoms). I asked my school’s health center to do it, but the nurse practitioner there said it wasn’t worth it; “It’s not like you’re running to the bathroom every time you eat a sandwich,” she said. (Well, no, but that’s not really how it works, so… but, okay.)

In the end, I got the blood test when I was home briefly after graduation, and my antibody levels were off the charts. I haven’t had a biopsy yet, but a recent paper concluded that blood test results are strong enough evidence of celiac that a biopsy isn’t necessary.

So, apparently, I have celiac disease just as much as Molly does, which means I need to eliminate gluten from my diet just as completely as she does. Or do I?

In my next post, I’ll delve into the questions that get asked of someone who only sort of has a disease that confounds people enough as it is. Stay tuned!

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The big 6

On Monday, July 29th, I intended to write about a momentous milestone in my life. But I wasn’t sure what to say that I haven’t said already before.

Finally, at the end of the day, feeling the need to mark the date, I went with, in the manner of all aspiring and procrastinating writers today, a Tweet: “As of today I’ve been gluten-free for 6 months. That calls for cake.”

If you’re into brevity, you might want to stop there. (But if that’s the case, I’m not sure why you put up with my blog in general.)

In response to my proclamation, probably picking up on the mention of cake, one Twitter buddy asked me if I ever cheat. We’ll come back to that one.

Another response came from Wendy of Palm Trees and Gluten Free, who wrote to congratulate me. She said, “It’s amazing how that date becomes as important as a birthday!”

I hadn’t thought of it that way, but it’s true. As on a birthday, I had that uneasy sense that I should feel different but don’t. Despite the importance we give to the occasion, a birthday usually doesn’t, in itself, represent a step forward. Sure, a few do grant you special privileges, like your 21st or 18th or 13th (if your parents truly didn’t allow PG-13 movies before then, that is). But by now, the majority of that kind of birthday is already behind me.

Instead, I’ve entered into that vast, undifferentiated stretch of road called adulthood, where birthdays are just markers of another year’s worth of life experience, thought of so rarely that I often can’t remember how old I am right away when asked. A birthday just means another year has passed. Not all at once, but second by second by second until 31,556,926 have fled.

Similarly, although six months’ worth of gluten freedom is a milestone of sorts, there was no reason to think that on the morning of July 29th I would wake up a changed person. Any change between the 28th and the 29th would have been so incremental as to be unremarkable. What’s important is the accumulation of improvements (however piddling) and experience over the course of those six months. Just like a birthday, this day meant no more than that I had made it a certain unknown percentage of the way through my gluten-free life.

As with a birthday, the amount of time the 29th marked seems simultaneously much shorter and much longer than it had really been. Shorter because, as has been observed again and again by writers more eloquent than I, it is in the nature of time to appear shorter when viewed backward than forward.

Longer because January 29th, the day of my official celiac diagnosis, wasn’t the first time I ditched wheat, barley, and rye. Almost three years before, I’d experimented with a diet low in pretty much everything thought to be tough on the gut (that’d be FODMAPs, and includes wheat, rye, and barley); I’d dabbled in “low-gluten” eating (which is basically a joke); and I’d done a whole-hog six-week gluten-free diet trial half a year before. Although it’s been six months of celiac-induced GFdom, gluten has been on my mind for longer.

Also because it’s been an intense six months. “I’m not sick because I’m stressed; I’m stressed because I’m sick”—how many times have I made that response? I still think it’s true, but it turns out not to be true that a diagnosis and prescription could take my stress away (hum that to the tune of the Berlin song). The certainty has eased some worries but added others: that the healing isn’t moving fast or far enough, that XY, or Z might have gluten in it, that I’m driving everyone crazy by talking about it all the time.

In honor of this date, I originally thought I might reveal all of my celiac symptoms on this blog (which you may or may not have noticed I’ve been quiet about, even as I bemoan our collective inability to talk about some of them). This wasn’t because you likely have any desire to know them but because I felt it would be terribly satisfying to cross off all those that had gone away.

But, after the sixth month, the truth is that few of what I believe to be celiac symptoms have actually resolved themselves. The gastro stuff is getting better, a little, but I still don’t know if the rest even are celiac symptoms. All I’ve gotten so far are “maybe”s and “we’ll see”s. To list what remains would be to jinx it.

So instead, dear readers, on this belated half-anniversary of my gluten-free rebirth, I leave you with only a promise: that six months, or twelve, or eighteen, or however many it takes from now, I will have crossed off more of that list. That I will not again succumb to the kind of complacency about my own well being that led to three years without a diagnosis. That I will beat this thing.

And—to answer my friend on Twitter—that no matter how long it takes, and how long it seems to take, under no circumstances and for no reason will I ever “cheat.”

Not even for cake.

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