Tag Archives: Columbia

Why do we get celiac disease?

I know why I got celiac disease. Do you?

We all have our special origin stories when it comes to why we are the way we are. Humans love to reach back through the strands of our past and attempt to reweave them retrospectively into a narrative we can understand. “X happened, and Y happened, and Z happened” isn’t an appealing way to view our life story: it’s disorganized and random. “X happened, and therefore Y happened, and it all came to a head with Z” is neater and much more satisfying.

So, I know why I have celiac—or, at least, I like to believe I do. I’ve taken all my precious, faulty memories and molded them into a story that makes sense.

My Theory

It’s simple enough: I was born with the celiac gene and lived happily in my glutenous environment, eating whatever I darn well pleased, without so much as a twinge from my cast-iron stomach. Then, I lost sixty pounds in a year, messing with my gut bacteria in ways not even scientists understand. Immediately after I stopped losing and started maintaining, I got sick. Eventually, I learned it was celiac.

To me, the timing is too coincidental to be coincidence. Thus, with no hard evidence whatsoever, I’m convinced: I wreaked havoc on my body’s bacteria, then I gave them some gluten and ruined everything—all in pursuit of thinness. (How many pounds my body has reacquired in revenge is not an important part of the story.)

“But Molly,” you may protest, “I’m a naturally svelte god/goddess who has never actively tried to lose a pound in my life, yet I too have celiac disease. How can this be?”

If that’s so, then after mumbling something less polite, I would thank you for the insightful question, because it leads nicely into the second half of my post.

The Pie Theory

One of the best parts of the recent Columbia conference was Dr. Benjamin Lebwohl’s discussion of causal pies. This is a yummier name for a fundamental principle of epidemiology known as “the sufficient-cause model.” According to it, multiple risk factors for a disease come together in one person, like pieces of a pie. Once the sufficient factors (or ingredients) are there, the person gets the disease.

However, more than one set of ingredients can be combined to make a pie (as any gluten-free baker who has ever had to choose between all-purpose blends knows all too well). Similarly, most diseases have more than one sufficient cause; there’s more than one way to develop them.

For celiac disease to develop, two pieces of the pie must be there: genes (HLA DQ2 or DQ8), and gluten. But by themselves, they’re insufficient cause; almost a third of the US population has the gene and eats gluten, but most of them don’t have celiac. (There could be other universally necessary causes, but no one’s found them yet.) The rest of the pie needs to be filled in, perhaps completely differently for you and for me, with other causes.

causal-pies The other pieces might include:

  • early OR late gluten introduction by parents (which I have complained about before)
  • spring or summer birthday (because you probably started eating gluten in the winter, when infections were going around)
  • microbiotic dysbiosis (messed-up gut bacteria)
  • antibiotic usage (possibly insofar as it contributes to the above)
  • GMOs (but I doubt it. As Dr. Alessio Fasano pointed out, “There are no GMOs in Europe, but we still have celiac disease!”)
  • leaky gut (which Dr. Fasano talks up in his new book, Gluten Freedom)
  • headache medication (possibly because it makes your gut leak; the aspirin-based ones I regularly overused in high school before discovering caffeine are not included here)
  • other autoimmune diseases (though they may in fact be consequences of the same factors as celiac—pies rather than pieces)
  • excessive hygiene (which I’ve joked about before)
  • and so on.

Why all the theories?

It’s important to determine causes of celiac disease not only because humans hunger for coherent life stories, but also because discovering causes could help us prevent, treat, or even cure future cases. This is particularly crucial because celiac disease is increasing in prevalence.

Plus, differently constructed pies may require different treatments. The baking metaphor breaks down a bit here, but we know that some people take longer to heal than others, and that some people must adopt additional measures beyond the gluten-free diet to get well, while others get cross-contaminated regularly with no consequences. Maybe that’s because their identical disease has different causes.

Why do we get celiac disease? (It's all because of pie.)

Original photo of a probably glutenous lemon pie © speedbug | Flickr

Dr. Lebwohl did not make any jokes about a) the gluten content of causal pies, or b) celiac disease being “easy as pie” to develop, so please consider those bad jokes my contribution to the scientific conversation.

Now, it’s your turn to contribute: Why do you think you got celiac disease, or another GRD? Do you have a pet theory about why they are increasing in prevalence?

This is the latest installment in my Sprue/False series of simple but difficult-to-answer questions about celiac disease. (See also Is a Gluten-Free Diet Good Enough? and More on Drugs.) By the way, although “Why do we get other gluten-related disorders?” is a great question too, I focused on celiac because, unfortunately, we’re even farther from answers when it comes to other GRDs.

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More on drugs: Big questions and non-answers about celiac disease medication development

My first post about Columbia’s celiac disease symposium was heavy on snacks, light on facts. That’s partly because, as I mentioned, many facts are undiscovered. But also, under the residual influence of my sugar high, I got a bit carried away and didn’t make space for what I did learn.

The comments on that post made it clear I’m not the only one interested in medicating my symptoms into oblivion, and just as clear that many have serious reservations about the idea. So, I thought I’d circle back to a few more questions about the celiac disease medication options being developed:

What non-drug options exist?

Many of us have ongoing symptoms. But that doesn’t mean we all have non-responsive celiac disease or the dreaded refractory CD, and it doesn’t mean we all need medication.

In some cases, symptoms are not due to celiac disease, but to coexisting autoimmune diseases or other conditions (e.g., small intestinal bacterial overgrowth or “leaky gut”). These conditions may have been triggered by your celiac disease, the trigger for your celiac disease, or just coincidence: a sign of your good luck. In any case, if you have another issue, you have to treat it; various options exist.

In other cases, modifying your diet even more can help. You may be inadvertently consuming gluten. You may have other sensitivities—most commonly lactose intolerance—or allergies. You may need to go low-FODMAP (more on that to come). And you need only glance at the “new and popular” gluten-free cookbooks on Amazon to see how many GF people are deciding to go paleo.

Interestingly, several bigwig doctors at the conference claimed to have no idea what paleo is. A fellow attendee asked about it, and they shrugged the whole thing off as a passing fad beneath their attention.

Banksy caveman with burger and soda

Banksy doesn’t know what paleo means, either. But he’s not my doctor.
Photo © Lord Jim | Flickr

As a vegetarian, I’m far from espousing the paleo diet, but I find the doctors’ cavalier attitude absurd, considering how many of their own patients must be going paleo, and the diet’s striking similarity to the “gluten contamination elimination diet” that has demonstrated success in one small study, in which over 80% of patients with ongoing symptoms became symptom-free.

Both diets require cutting out grains, legumes, and processed foods. What sets them apart is philosophy: paleo is about changing your diet for life, with the idea of eating the way we evolved to eat; the GCED is about restricting your diet for a limited time to target a specific issue. (In the study, many participants returned to a “standard” gluten-free diet after six months, without new symptoms.)

In my opinion, both diets, as well as their offshoots (e.g., The Wahls Protocolshould be of interest to doctors engaged in treating patients with non-responsive celiac disease. But at the conference, inexplicably, no one addressed them. So if you were wondering what we know about going grain-free, the answer may as well be nothing. 

Anyway. Back to drugs. Who needs them? 

Well, we can say who doesn’t: anyone without lingering symptoms, anyone with symptoms who has already found a solution, and anyone who feels the symptoms they have aren’t worth the trouble of taking a pill.

Even when drugs are available, it’ll be your right to be suspicious of them, and certainly your right not to take them. But consider this: the main arguments against taking medication are:

  • expense—but the gluten-free diet is expensive, too
  • hassle—but the gluten-free diet is a hassle, too
  • dependence—but we’re all dependent on the gluten-free diet already
  • side effects—but the diet has those, too:

As for medication side effects—who knows? But the drugs currently being developed are meant to target gluten, not the body, so their side effects may in fact be less severe than those of the diet. Not many things affect us on more sides than diet does.

For those of us who want them . . . when can we get them?

The panel of reps from Glutenase, Larazotide, and Immusan-T, gave some very slippery answers to this question: “no way to know”; “too many variables”; “developing a drug is a marathon”; and so on.

The moderator, much to his credit, insisted on pinning them down: “Assuming things go reasonably—not miraculously—according to plan, when can we expect these drugs to hit the market?”

One drug representative gave a very flip answer to this question (perhaps indicating a lack of confidence in his ability to answer it). Another seized this opportunity to lean forward and intone, directly into the mic, “Three years.” That set the bar: the other two grudgingly agreed that three to five years should do it.

That’s not so far off (!), but we do have some time to decide whether we want to take medication in addition to our diet.

Why not talk about it now? What worries you about drugs? What doesn’t? What else have you tried or are you thinking of trying? And why don’t docs care about cavemen?

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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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Happy hump day!

Photo © blue_quartz | Flickr

Photo © blue_quartz | Flickr

Wednesdays after a vacation are so much harder than other Wednesdays. I had a great visit with my parents last week, then hosted my sister over the weekend, and then had a half day yesterday because of my doctor’s appointment. All of this means I should be well rested and bright-eyed as I tackle the rest of my week, but instead, I’m dragging. (I blame my lack of nutrient absorption; what’s your excuse?)

To keep my enthusiasm up, I’m focusing on a few small pre-hump triumphs:

1. I had my first dinner party since going gluten-free. Hello, amaranth-polenta-stuffed peppers! Did you know amaranth is rich in, like, everything holy? Protein (including lysine), fiber, magnesium, iron, zinc, calcium, B vitamins…all that stuff veg-heads and gluten-freebies crave. I am not the first to compare it to manna. I’m eating my way through the leftovers and still have half a package left to use in another recipe. Thanks again, Mom, Dad, and Bob!

2. I made the Bob’s Red Mill brownies for my writing workshop and they were widely agreed to be delicious (by the same pals who said terrible, terrible things about the chocolate chip cookies). I filled them with about three times the recommended amount of chocolate chips (1/4 cup? Really?) and frosted them with Betty Crocker fudgy chocolate frosting (a bit sacrilegious for a girl whose parents would always opt for homemade ganache, but hey, they’re the ones who bought me a baking mix). They were even better the next day after chilling out in the fridge. Thanks, everyone, for recommending the brownies.

3. My new doctor is great. She listened to my concerns, she ordered a few more tests, she reassured me that everything takes time. She also felt my ankles and said, “You really run a lot, don’t you?” I have no idea if those two things were connected, but it amused me.

4. While at the doctor’s, I picked up a copy of the latest edition of Columbia’s Ultimate Guide to Gluten-Free Living (the linked edition is not the most recent, but I’m not sure the 2012 printing edition can be found online). It’s pocket-sized (if you are a man—if you’re a woman, you know the only thing pocket-sized is lip balm) and packed full of goodies. I read a lot of books, articles, and blogs about celiac disease and gluten-free living and often find the same information over and over again, but the little kernels of new knowledge make it worthwhile. This book lists a whole bunch of gluten-free brands I can check out and also highlighted Montina (Indian ricegrass), which is a new grain on me. I think it’s similar to Kamut (not gluten-free), in that the name is a registered trademark and it seems to be produced by one company only. On a less happy note, it also seems tough to find. Anyone tried it or know where to buy it?

5. I also found it adorable that the guide included the misspelling xantham gumSeriously, it’s so much cuter that way.

6. Plus, it included one of those dining cards you are supposed to give to baffled waiters at restaurants. Do you carry one of these? I’m hoping I won’t mistake it for a business card—not that I give out many of those anyway.

7. Finally, when I pulled out the book I triggered an awkward but pleasant subway interaction with the guy sitting next to me. He told me he has a friend who needs to eat gluten-free, and I mentioned I was vegetarian as well, so we talked about soy. It was the first time I have ever heard someone say the word phthalate out loud. I looked back down at the book after a bit and he got up at the next stop, whether because it was actually his stop or because I made him feel unwelcome, I do not know. I hope it was the former. Although I don’t handle stranger banter all that well, I do love these chats because they remind me that the other people on the train are real people with interiority, not strange cyborg commuting machines, which also reminds me that I too am real.

What’s helping you remember you’re real this Wednesday? (Lots and lots of coffee? Oh, me too. Me, too.)

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