Tag Archives: dessert

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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How I accidentally terrified my peanut-allergic friend

trader-joes-sunflower-seed-butter…and you can, too—not that you should—in three easy steps:

Step 1. Buy sunbutter.
Step 2. Make buckeyes.
Step 3. Serve.

See, I like peanut butter. I like peanut butter a lot. Give me Thai peanut sauce, Reese’s cups, Nutter Butters, any flavor of Peanut Butter & Co.—if it’s peanuts, I’ll eat it.

I have a friend, whom I’ll call B., who is allergic to peanuts. When I discovered that sunflower seed butter (or sunbutter) has a taste and texture like peanut butter’s, I was surprised to learn B. had never tried it. No peanut butter and no peanut butter substitute? How did he live?

Sprue Jr.—that’s Althea, who thought she should have a special name on my blog, and should be more careful what she wishes for—loves peanut butter, too. We always have a jar in the fridge, and we sometimes even make our own. (Lightly salted Planter’s peanuts make the best peanut butter ever, and if you add in pumpkin puree and pie spices, it’s all over.)

So, at a party we threw, we decided to show B. what he was missing. We made all the food not only vegetarian and gluten-free, but also peanut-free, tree nut–free, and soy-free (because a soy-intolerant friend of ours was also attending). We wanted to ensure everyone could try everything, without feeling nervous. It’s just nicer that way.

Now, buying groceries with gluten in mind is annoying enough, but this was harder still. I’ve never been more grateful for my smartphone. I scrutinized package labels and manufacturers’ websites until I thought my eyeballs would fall out and roll away down the aisle. It seemed every brand of chocolate that wasn’t processed alongside wheat was processed alongside nuts—or, failing that, contained soy.

Once I had found acceptable ingredients and resecured my eyes in their sockets, Sprue Jr. and I had a wonderful time rolling slightly-too-warm sunbutter balls around in not-really-tempered chocolate. By the way, the forks method only works for the first dip.

Clockwise from top, we've got white-chocolate- and dark-chocolate-covered no-bake cake truffles, dark-chocolate buckeyes, more truffles, marshmallow-swirl brownie bites, and milk-chocolate buckeyes. And you probably recognize the berries.

Clockwise from the top, we’ve got white-chocolate- and dark-chocolate-covered no-bake cake truffles (made with KAF vanilla cake mix), dark-chocolate buckeyes, more truffles, marshmallow-swirl brownie bites (made with Bob’s brownie mix and marshmallow fluff), and milk-chocolate buckeyes. You probably recognize the berries.

Despite the not-fit-for-the-Cooking-Channel preparation, the buckeyes, once set overnight in the freezer, tasted perfect. When I carried the desserts platter around at the party (to collect the oohs and aahs and you-MADE-this?s), I thought B. would be thrilled.

Instead, he took the candy with trepidation and said, “It smells like peanut butter.”

Silly me, I nodded enthusiastically. Sprue Jr., who was standing by, did too. We know!, I suppose we were both thinking. Isn’t it great?

“Are you sure there’s no peanuts in this?” B. said, and it finally dawned on me he was nervous. We assured him it was safe—not processed alongside nuts or anything—and he took a bite.

“It feels like death coating my tongue,” he said.

Crestfallen, we began a chorus of apologies and oh-nos.

“No, it’s good,” B. continued, “but it tastes just like what I imagine peanut butter would taste like.” Later that evening, he exclaimed—more than once—that he couldn’t believe he wasn’t dead.

He later elaborated, in email,

At the time it felt really strange…I had this visceral sense that I was eating poison. Whenever I smell peanut butter there’s this burning in my nose—not because of an allergic reaction, I don’t think, but my body just knows it’s poison, and it mixes my immune system with a fear reaction and the adrenaline starts pumping and I just know something is terribly wrong. And sunbutter smelled exactly the same way to me, or at least my body had the same response, so it was hard to force myself to just eat it…

Of course, I didn’t intend to scare B., or make him feel like he was being poisoned. All I wanted was to share something I enjoy with him, the best way I could. But he hasn’t had sunbutter again since the party, and though he said that the aftertaste was clearly sunflower seeds, not peanuts, and that he’s not opposed to trying it again, he clearly didn’t respond with the “here’s what I’ve been missing all my life” sense of joy I’d been expecting.

The experience showed me how different it is to have celiac disease, diagnosed in my twenties, than to have anaphylactic food allergies from birth. There are specific things I have happy memories of eating, and therefore want to recreate now. For someone who has never had anything but scary or painful memories associated with a food, there’s understandably less reason to find a substitute. And, although I can certainly relate to being nervous that something I’m eating might turn out to contain gluten, accidental peanut exposure poses a more immediate risk for B.

The lesson here is this: If you, like me, love peanuts, and have a friend who can’t eat them, by all means make and serve these delicious buckeye knockoffs (taking, of course, the same cross-contamination measures you’d want someone to take for you).

But remember: one man’s favorite is another man’s poison. Your friend may not run right out to buy a year’s supply. If not, well, more sunbutter for you. And the only thing scary about that is how quickly you’ll go through it.

Do you like to eat “free from” substitutes for old favorite foods? Is there anything you draw the line at trying? And are you a peanut butter or sunbutter fan, too?

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