Tag Archives: research

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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Gluten-Free Astrology: Aries (born March 21 – April 19)

Photo © Jason Hill | Flickr

Photo © Jason Hill | Flickr

Yesterday was the first day of spring, and I totally missed out on marking it. Whoops! To demonstrate my awareness of the passing seasons, particularly at this time of new beginnings, I’m introducing a new monthly feature. That’s right, I’ve decided I’ve been at this Blogging Thing long enough to start having Features. I hope that you’ll find this only as presumptuous as unnecessary capital letters, and not more.

Now, for the preamble: there’s a hypothesis that celiac disease may be more common in those with spring and summer birthdays—especially spring. Yup, April baby showers bring May rice flour. The increased prevalence, so the hypothesis goes, has to do with the time of weaning (and, therefore, first gluten exposure) coinciding with the season of viral infections, which play a role in the development of some autoimmune diseases. For me, this brings a whole new meaning to family planning. If I’m ever in a position to conceive a child, I’ll be sure to do it in the spring. Or raise my child in a bubble, which just might be possible by the time I’m in a position to conceive a child.

But I digress. My point is, date of birth is a important piece of the celiac puzzle. And since we don’t know much of anything at all about non-celiac gluten-sensitivity, I’m happy enough to lump everyone in to the hypothesis and my New Feature. It’s called Gluten-Free Astrology and it will explain what else your date of birth means for your gluten-free status.

Photo © Manuel M. Almeida | Flickr

Aries’s symbol is the ram
Photo © Manuel M. Almeida | Flickr

Aries begins today, March 21st, and extends through April 19th. If your birthday falls in that span, here are my thoughts on what you can expect from the month ahead. (And by “my thoughts,” I of course mean “eternal and incontrovertible message from the stars.”)

The Gluten-Free Aries is ruled by the planet Mars, named for the god of war, aggression, and conflict. As a GF Aries, you likely have a conflicting relationship with your gluten-free diet and often argue with your doctors or yourself and lash out against others who question it.

You are a “me-first” type who should follow your natural impulse this month to put your gluten-free needs front and center in every encounter, whether it be at a friend’s home or at a restaurant, thereby increasing awareness for the rest of us. We will hope that a GF Libra, your polar opposite, comes along shortly thereafter to soothe any hurt feelings you may have caused, thereby increasing good will toward the rest of us.

However, this month you should also strive to overcome your innate tendency to be self-centered. One good way to do this, I’ve heard, is to comment on other people’s blogs, such as mine.

GF Aries stands for new beginningsoptimism, and change. This month, be open to new activities, friends, and channels for your boundless energy. You may find your life takes an unexpected direction (or you may not—this is astrology, after all). Perhaps your inborn desire to take the reins will encourage you to finally open your own business, and if so, I hope that it will be a gluten-free restaurant around the corner from my apartment.

Because of your extravagance, you may find yourself in debt this month of tax-paying, particularly if you’ve been pouring your extra money into that gluten-free restaurant. You’re a creative type who will always find your way out of such a bind, though, so please don’t let that stand in the way of your dreams. (Thai would be nice, or Mexican—hold the flour tortillas.)

The body part ruled by GF Aries is the head, so this month watch for migraines and facial injuries that may signal the start of a renewed battle with gluten.

And, if you’re interested in such things:

Maya Angelou

Maya Angelou

A fellow celebrity with the sun in Aries is Maya Angelou. Though she has no trouble at all with gluten, so far as I’m aware, she’s still a great lady (and I turned up this great post about her from last year on Celiac and Allergy Adventures).

Russell Crowe

Russell Crowe

Russell Crowe is another celeb who apparently does fancy himself a GF Aries—though I think he did it to lose weight, and we all know that man does not lose by gluten-free bread alone. (Plus, the paparazzi caught him carrying a pizza—no, Russ, “thin crust” does not mean gluten-free.) Hey, no one ever said celebrities have to be good role models. (On that note, Hugh Hefner is also an Aries.)

As a GF Aries, you lack patience and therefore have probably not bothered to read to the end of this post. That’s okay, as long as you hit the part about the new restaurant you’re opening for me this month. Just let me know when you’re open—I may be a flighty GF Gemini, but I am committed to bringing my spring-birthday-and-therefore-celiac-having self in once you’ve got it together.

The “information,” such as it is, in this post has been largely ripped off from The Only Astrology Book You’ll Ever Need, by Joanna Martine Woolfolk, which is in fact the only astrology book you’ll ever need (need here being a relative term).

Let me know what you think of my New Feature, and what your sign is so I can get started consulting the stars about your destiny. 

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A revised hygiene hypothesis (with tips for the hypothetical slob)

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Photo © pfly | Flickr Creative Commons

Researchers, as you likely know, are eager to learn why food allergies, gluten intolerance, and celiac disease appear to be on the rise. Many are fond of the hygiene hypothesis, which states, in a nutshell, that decreased early exposure to bacteria—i.e., being too clean as babies—predisposes us to all kinds of autoimmune and allergic BS.

I’m fond of this hypothesis, too. I’ve been known to turn down offers of hand sanitizer, citing it as my reason. Still, I propose that it is incomplete. The full hypothesis should read:

Good hygiene may cause celiac disease, but bad hygiene keeps it strong. 

We all know this on a basic level, and some people don’t even seem all that blown away by it. I’ll mention, shuddering, that having this disease means I’ll need to wipe down countertops for the rest of my life, and they stare at me as though wiping down countertops were something they’d always done. People diagnosed with celiac disease who know how to wield a sponge are lucky; they’re one step closer to good health. But those diagnosees who trend toward the slovenly side must cultivate a neat streak, and (as you may recall from my ode to mess) it’s a heavy leaf to overturn in a day! I would contend that a leading cause for a lack of response to a gluten-free diet, right up there with non-adherence, is poor hygiene.

Sloppy sufferers who have spent weeks on a strict diet and still feel ill may need to look beyond the standard “sneaky gluten” hiding places. For these hypothetical sufferers, I’ve taken the liberty of compiling a list of additional warnings. Please keep in mind that the below suggestions are intended to address a strictly hypothetical celiac patient.

  • If you bite your nails or put your hands to your mouth, you may be picking up traces of gluten. This is especially likely if you don’t tend to make a specific point of cleaning under your fingernails.
  • If you were accustomed to eating breakfast at your computer before diagnosis and if you ever dropped a Cheerio (or several) onto your keyboard, you might be picking up cereal residue every time you touch said keyboard. If you then put your hands to your mouth—say, if you have continued to eat breakfast at your computer—you might be ingesting particles of gluten.
  • If you are a green type who carries your groceries home in a tote bag, and if you have also eaten a hunk of apple cake out of said tote bag on the subway, and if you happen to have not washed that tote bag since before diagnosis, you might be ingesting cake crumbs that are stuck to your potatoes (if you aren’t the most finicky ever about washing your produce).
  • If you have been known to wipe your hands on your jeans when no napkin was available, and if you happen to have not washed those jeans since before diagnosis, and if you continue to use said jeans as a napkin and then put your hands in your mouth, you might be ingesting traces of—really, who knows what at this point.
  • If you are partial to eating in bed, and if you don’t fret too much over dropping crumbs in said bed, and if you haven’t washed your sheets since before diagnosis, and if you bite your nails or put your hands to your mouth in your sleep, your dream about eating cookies may not be so far off from reality.
  • If you drop a fork on the floor and if you decide to use it anyway without washing it first, and if you haven’t swept your floor since—charitably speaking—before diagnosis, you may be consuming forkfuls of gluten.
  • If you have always been an unrepentant slob, and if you haven’t yet changed your ways, and if you still feel sick as a dog, you might want to think about quitting your nail biting and doing a few loads of laundry. One way or another, it’ll probably do you good.

Like I said, this post is all about hypotheses and hypotheticals. The above list is not even a little connected to my personal life. However, you may be interested to know that I did recently quit biting my nails and do a few loads of laundry. Before sitting back down at the computer to eat breakfast.

If you have more hygiene suggestions or tough love for the aforementioned hypothetical celiac patient, feel free to include them in your comments!

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Villi or von’t I feel better today?

I probably von’t, though I really can’t say.

shrugging md

One of my favorite things to hate about celiac is how slow-going recovery is. A lot of studies, like this one, check in with people after 6 months on the gluten-free diet (GFD), and (most) people feel (mostly) better by then (though most studies don’t say how people felt in between). Jules Dowler Shepard suggests 3 to 6 months for “younger people” and up to 2 years for “older adults.”

I know, I know, healthy intestines, like Rome, aren’t built in a day. But it’s a bit of a bummer that people without diagnoses are going gluten-free left and right and claiming miraculous, instantaneous improvements to their quality of life, while I’m chugging along clutching my GFD prescription and hoping I’m doing it right.

Back in the spring, I tried the ole GFD for about six weeks and observed no real difference. Did I do some stuff wrong? Yup. Did I do most stuff right? Yup. I assumed I didn’t have celiac but figured I’d go back on gluten and get tested anyway. Blood test, biopsy, and oh hey, I do have it. Awesome. This time around, I’m correcting my errors, and I’m trying the no-oats (even “pure”) and no-lactose thing. I cut out drinking, too, just in case it helps—though this has left my friends most displeased. Coffee…oh God, I just, can’t. Yet.

By the way: A lot of research is done on why people don’t adhere to the GFD. Personally, I think an online database of average length of GFD prior to various symptoms improving would be helpful. Like, type your symptom here to find that X percent of people with anemia see resolution after X months, and X percent of people with depression see resolution after X months. Knowing you’ve still got Y weeks or months left to go until you hit the average resolution date would help fortify you, and knowing you’ve already passed the average could prompt you to go to your doctor to discuss the possibility of other complications. I could get back so many hours of my life devoted to Google searching if I had such a reference.

In the meantime, I’ve settled on July 29th, precisely six months from diagnosis, as the magical date upon which I anticipate all of my symptoms will fade away like brain fog off a windshield, or disappear in a puff of hydrogen sulfide. Until then…

Knowing what ails me is making me happy,
But other than that I feel utterly crappy.

Hope you and yours are feeling vell as ve head into the veekend (a long one, for us Americans). One last assignment for this veek: If you have celiac, how long did it take you to feel better? Did you have to throw in any “add-ons” to your gluten-free diet?

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