Tag Archives: event

Is a gluten-free diet good enough?

Last week, I had the pleasure of attending Columbia University’s Development of Therapies for Celiac Disease Symposium. Doctors and researchers from around the world gathered to present fascinating talks and Powerpoints full of text almost all too small to read.

Also attending were patients, like myself, and some folks doing fantastic work on behalf of the gluten-free community. Hearing their stories was my second favorite part of the conference. Glimpsing the most cutting edge of celiac science was my third.

First, of course, was the food. Everything served was gluten-free; and, it seemed, everything was served. Bread baskets overflowed, and entrees and sides kept even us vegetarians happy (saag paneer—yum). There was dessert after every meal, even breakfast—which was itself essentially dessert, consisting primarily of muffins, donuts, fruit, yogurt, and “coffee” cake.

In two days I ate more desserts than anyone should eat in a month. I can’t tell you how many exactly, because a) it would be embarrassing and b) I lost count, but brownies, crème brûlée, polenta cake, kheer (Indian rice pudding), and pound cake were not excluded. Some treats were from Pink Poppy, others from By the Way Bakery. So. Much. Sugar.

gluten-free muffins, donuts, and bagels at conference

The lighting doesn’t do them justice, but trust me: delicious unfrosted cupcakes muffins.

As if all that weren’t enough, we were also encouraged to take samples, and take them I did: The Simply Bars, Crunchmaster multi-grain crackers, NoGii paleo bars, Schar multigrain ciabatta rolls, and Le Veneziene chocolate hazelnut cookies. The cookies expire in a month, so we’ll have to eat them fast.

Okay, okay, I admit: the point of the conference was not the food. The point was to learn about gluten-related disorders. And I’m evading that point because the conference’s unofficial motto was “Good question! We can’t answer it.”

Much about celiac disease and gluten sensitivity remains uncertain, due to conflicting study results, lack of longitudinal and prospective data (meaning, collected over a period of time as events unfold, unhampered by subjects’ flawed memories), lack of appropriate controls, or the fact that serious research attention hasn’t been paid to this field until recently.

Celiac disease is not a simple disease. You know that, I know that, scientists know that, and (some) doctors know that. Unfortunately, that’s about all we know.

Still, because I did learn a lot about what we don’t know, this will be my first in a series of posts about the questions the conference raised, and the answers that may someday prove to be true—at least in part. I call it “Sprue/False.”

We start with a big one:

This question was at the symposium’s heart. If “go gluten-free” were all we needed, no one would be developing therapies (other than snake oil peddlers). “Go gluten-free and wait” is another option. Multiple presenters affirmed it can take years for adults to heal. But is that the best we can do?

Unsurprisingly, the drug developers say no. Glutenase (a.k.a. ALV003, and importantly distinct from “Glutenease”) researchers had a pool of about 200 gluten-free celiac patients keep a seven-day symptom diary. Over 90% had at least one day of symptoms, and 44% reported five to ten symptoms. Three quarters called their symptoms “moderate,” “severe,” or “very severe,” and 20% missed social events or called in to work.

Also potentially significant is the fact (stated in another presentation) that even on the gluten-free diet, adults’ villi may never rebound to “normal” length—meaning, possibly, we don’t regain the ability to absorb nutrients as well as we should. Yet another presenter suggested we may be wrong to assume that all is peachy—from a health perspective—for diagnosed kids.

We see an unmet medical need,” said Daniel Adelman, of Glutenase. “The gluten-free diet is all we’ve got, and it’s not enough.

But doctors aren’t so sure. Dr. Julio Bai’s comment that his patients did not make such complaints met with widespread head-nodding from clinicians. More than one expert scolded the drug developers for not surveying a control group. “For all we know,” their argument went, “everyone would report weekly gut symptoms if given the opportunity.”

I’m disappointed they didn’t include controls, but otherwise, I’m with the druggists. I’ve been scrupulously gluten-free for well over a year and still don’t feel well. And faulty memory, schmaulty memory, I know it wasn’t like this before. There has to be something more I can do. The question is, what?

Patients can help answer that. Both Larazotide and Glutenase—drugs being developed as adjuncts, not replacements, to the GFD—are in clinical trials. Neither trial is currently requiring participants to deviate from their usual diet, and both have been through extensive safety testing.

I’m investigating Glutenase’s CeliAction Study, myself. Celiac changed my life and so far the GFD hasn’t changed it back. I’m ready to try something new. Worst case scenario, I get a placebo or the drug doesn’t work. Best case? My life returns to really, truly good enough.
gluten-free Fridays Vegetarian Mamma
Over the next few weeks I’ll explore more unanswerable questions about gluten-related disorders, with less preamble about brownies. In the meantime, tell me: In your experience, is the gluten-free diet enough? Would you ever participate in a clinical trial? Have you already?

Post #2 on the conference is up: check out “More on Drugs” and share your thoughts!

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“You don’t need this one, do you?”: A tale of the Gluten and Allergen Free Expo

Today I have a story for you about my spam filter.

I get a lot of email, so the little guy really gets put through his paces. (Yes, my spam filter is a little guy. He resides inside my Gmail apparatus, where he sorts desperately through the onslaught of slush, never recognized when he does something right but always excoriated for his errors…sort of like the stereotypical publishing intern.)

Email spam onslaught

Photo © Jean Pierre Gallot | Flickr
Looks like someone’s little guy has been on vacation.

If you’re wondering why I get so many emails, it’s because:

  1. I have a giveaway addiction. If you follow me on Twitter, you may already be aware of this. (If you don’t follow me on Twitter, join me! You’ll never miss a Kinnikinnick giveaway again.) This wouldn’t be a problem except that, to get extra entries, I sign up for all kinds of newsletters that I never have time to unsubscribe from, much less read.
  2. I love deals. So I always sign up when Express wants to email me updates on their end-of-season sales, and I can’t bring myself to quit Groupon Goods or Blackboard Eats (someday they’ll post a passcode for Risotteria). Plus, I’ve joined all the gluten-free-specific deals sites now, too. So many delicious, edible goodies to completely ignore.
  3. I’ve posted my email address on my site. Therefore, the bots are all over me.
  4. I’m very, very important. Thus, I receive important correspondence. I’m sure you guessed this one already.

Given all of the above, I can’t possibly be expected to sort through my emails myself. Gmail’s new “promotions” tab helps somewhat, but my spam filter must do the rest. And, occasionally, out of spite or exhaustion, he flubs it. He shows me something I never wanted to see, or he hides something I really, really wanted to see…such as the email welcoming me to attend the Gluten and Allergen Free Expo in Secaucus, NJ, as a blogger this September 7th and 8th.

No, little guy, no! What’s wrong with you?

I’ll sort him out later. But because of his hyperactivity, I didn’t find out until just a couple days ago that I get to go to the Expo to see, to taste, to learn, and to report back to all of you.

GFAF Expo Blogger Badge (Gluten Free and Allergen Free Expo, Secaucus, NJ)Still, I’ve managed to pack several weeks’ worth of excitement into those days. I’ve never been to a gluten-free expo before, and this one looks like it’ll be a blast. They’ve got an awesome lineup of classes (I’m looking forward to the presentation on turning glutenful recipes gluten-free by Chef Richard Coppedge, Jr.), and I know all of the vendors will be distributing samples and swag. (See above re: love of deals and giveaways.)

I’m sure my mind, strained as it is by my mountains of email, will be even more boggled by the array of gluten- and allergy-free choices available today. I feel lucky (-ish) to have been diagnosed at a time when the gluten-free market is exploding. And I feel lucky (-er) to be able to go and check some of them out in a couple of weeks.

Do you want to feel lucky, too? You can get in for free by volunteering, or you can buy tickets here (including special “early bird” tickets if you want to beat the crowds). And if you don’t live in the area, you can check for another location near you—they’ll be in Dallas in October.

And, of course, if you happen to be as into giveaways as I am, you’d better believe I’ll be doing one. Check back next week to enter, and after the event I’ll send a bundle of Expo surprises your way.

Want to be sure you don’t miss it? Ignore everything I said about clogged inboxes and sign up to follow me by email below! (Or, if Facebook or Twitter float your boat, I’d also love to see you there.)

Photo © Gluten Free Allergen Free Expo | Flickr

Photo © Gluten Free Allergen Free Expo | Flickr

Tell me your best stories of spam filters gone awry or bursting email inboxes. Will you be at the Expo, or have you been to a similar event? Which class looks best to you? Any vendors I should be absolutely sure to check out?

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Why I Celebrate Celiac, and you should, too (plus: giveaway!)

In my last entry, I asked how I should celebrate my newly low antibodies. (The response was nearly unanimously in favor of alcohol—but I’ve kept my perch on the wagon for now, thanks very much.) This post is about celebrating something just a little different: celiac, itself.

When I got my first-ever celiac bloodwork results back in January and started sharing the news (one relative or friend at a time, shyly, haltingly—prior to my Internet-overshare era), the reactions were generally positive, along the lines of:

“I hope that’s it, so you’ll have an answer,”
or, “Awesome, you’ll finally feel better now!”
or, “Just wheat, rye, and barley? That doesn’t sound so bad.”

Then I’d start rambling about cross-contamination, and strict diet for life, and six months to two years to feel better, and I watched the faces slip and fall. The replies changed to:

“Maybe I don’t hope you have it after all,”
and, “Oh my god, I’m so sorry,”
and, “That’s terrible.”

Which is correct?

Well…obviously the best, most celebration-worthy thing would have been to never get sick in the first place (or—if you believe those insufferable “no sunshine without rain” folks—to get sick, be miraculously cured, and live the rest of my life with a renewed appreciation of my own good health). Being sick is not, you know, preferred.

But, as a second choice, a disease with a relatively foolproof cure—even an excruciatingly slow-motion, longterm cure—is way, way better than a disease or syndrome with no known cure. As long as I’m a good little gluten-free girl, my health is (knock on wood) far more likely to improve than worsen. That’s something to celebrate.

Of course, since I’m not feeling tiptop yet, it can be tough to get my celebratory feelings going. For inspiration, I can always visit the smart and often funny posts around the blogosphere on the “good side” of celiac (like this one, this one, and this one). If you’ll indulge me in jumping on the bandwagon, though, here are the top three tangible things I celebrate about celiac:

1) Community. I know everyone has said it already, but that’s because it’s true. The online celiac and gluten-free community is super supportive and full of passionate, intelligent, interesting voices. As a resident of New York City, land of “hate thy neighbor” and “not here to make friends,” I sometimes feel a bit community-spirit-starved. Sharing my thoughts and hearing all of yours is a real treat.

2) New adventures. This blog, the gluten-free grocery aisle, fascinating followup tests…all previously uncharted territory, all kinda neat. (Yes, even the tests. Spending a morning blowing into a balloon every twenty minutes to measure gut bacteria is something that everyone should experience at least once, preferably preceded by fasting.) If I hadn’t gotten celiac disease, there’s a strong possibility I would still have no idea that buckwheat groats are, like, the best grainlike substance ever. I would also probably not have a bag of xanthan gum in my pantry, as I do now (albeit, I must shamefacedly confess, an unopened one).

3) Savings. What? Gluten-free food is expensive? Okay, yes, some of it is. I too have had those six-dollar mini-muffins and air-filled bags of chips. But you know what else is expensive? Eating out in New York. And you know who doesn’t do that? Baby celiacs. This is why my student loan collectors also celebrate celiac.

Add all that to the prospect of—any day now, fingers crossed—my fully restored health and vigor, and you’ve got yourself something to, at the very least, tolerate and, on a good day, celebrate. But how (besides the obvious, you buncha lushes) to celebrate?

That’s easy. Come to the New York City Celebrate Celiac event! Hosted by Gluten Free Calendar, it’s happening on Saturday, July 13th, from 10 a.m. to 1 p.m., at the Affinia Manhattan Hotel in Astor Hall. I’ll be there to meet any of you who can make it, and I’ll be unveiling some fun new blog-related stuff while I’m at it. Here’s some extra info on the event at the NYC Celiac Meetup page. If you live in the area, mosey on down for performances, activities, vendors, collective effervescence, and, most importantly, my autograph.

Kidding! But I really would love to say hi face to face. That’s why I’m pleased to be giving away 10 tickets to the event. At $5 a pop (or $4, if you buy online here), they’re pretty affordable as is, but if you, like me, have been blowing through your I-don’t-eat-out-at-restaurants-anymore fund, every little bit helps. And, hey, that’s five more dollars you can spend on merch. Not that that’s what blogging’s all about.

To win a ticket, just comment on this post letting me know what you celebrate (or what you don’t celebrate, if you insist on being mopey) about celiac. Considering the scant probability of my having more than ten readers in the New York metro area, you probably won’t face stiff competition, but you’re still welcome to follow me and share the giveaway on Twitter to get extra entries and to celebrate our community here in the Big Gluten-Free Apple (don’t forget to include @spruestory so I’ll know).

For everyone outside of the area who’s read to the end of this post, I hope you’ll still join me, virtually, in celebrating celiac…if only because things could be a whole lot worse.

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