Tag Archives: gluten-free diet not enough

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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One step closer to a 100% fun-free diet

I’ve been a lazy, lazy blogger this week. I can’t blame the apartment search, because I found a short-term option for June and punted the hunt to next month. This week, there is one reason and one reason only for my lack of blog: caffeine withdrawal.

People who know me well know that I like my caffeine. When I told some people I was trying to go caffeine-free, responses included:

“You are?”
“Is anything else left?”
“So you’ll drink a 2-liter of caffeine-free Diet Coke every day now instead?”
and, simply, “…Why?”

My answers:

“Yes.”
“I hope so.”
“God no.”
and… “I don’t know.”

I don’t have a great answer to the last one. Caffeine isn’t bad for you—in appropriate quantities—and coffee in particular has been associated with lots of nice health bonuses. Diet soda has been associated with depression here, weight gain there, but the data is inconclusive. Both excessive coffee intake and excessive carbonated beverage intake can mess with digestion according to, oh, every list of tips for dealing with IBS ever; and the proteins in coffee have supposedly been found to be “cross-reactive” with gluten proteins in some people—not confirmed, but compelling.

Most importantly, I just don’t like being dependent on caffeine. I’ve spent the past several years playing a little game called “undiagnosed autoimmune disease vs. coffee” and, as of last week, was drinking 11 cups every morning (all at once, over the course of an hour), plus the aforementioned Diet Coke later on. I’m tied to the routine and it sucks up more of my time than it should. If most people are made up of 70% water, there’s a good chance I’m made up of 70% coffee. That doesn’t thrill me.

Photo © Amanda | Flickr

Photo © Amanda | Flickr

Caffeine is such a part of my routine that I nearly cried after reading Cheryl Strayed’s Wild because I knew I couldn’t possibly carry a large enough supply of coffee and water to sustain me if I ever wanted to hike the entire Pacific Coast Trail. Kindly ignore all of the other reasons I would find it difficult to imitate Strayed (e.g., I’ve never hiked or even particularly wanted to hike). The point of the anecdote is this: I’ve come to see caffeine as necessary. But what if it’s not? What if I could retrain my body to exist and, such as it does, function—without caffeine? What if it would even function a bit better?

As I (half) joked to one friend, “I hadn’t given up anything major for a few months, so it just felt right.” It was only a half joke because it’s true that I don’t feel right about just spinning my wheels waiting for my magical gluten-free diet to magically kick in; I want to keep trying things. This is another thing to try. It’s something that, back in February, I didn’t think I could do. So, progress! Sort of.

I decided to go caffeine-free rather suddenly, with no prior reflection, when I found myself at the end of Saturday not having indulged in my usual afternoon soda fix. At that point, I just thought, “Why not?” I went cold turkey, which is apparently the exact opposite of the right thing to do. Caffeine withdrawal is real, folks, and I’m proof.

By Sunday evening a headache had banded itself around my temples and behind my eyes, rendering me useless to do anything but fall asleep. I woke on Monday and my head still hurtI don’t think I’ve ever had a headache that lasted overnight that way. It’s most likely the closest I’ve ever come to a migraine. I felt so sick that I actually stayed home from work on Monday and slept all day. “Caffeine withdrawal” may sound like a sorry excuse for a sick day, but trust me, I was sick enough. That morning, I came so close to quitting: I even brewed my normal pot of coffee and poured myself a cup. I was saved by the fact that I felt too ill to drink it.

Now, I think I’m past the worst of it, beyond the initial “I’m in hideous pain” phase and into the “I can’t bring myself to do or care about anything because it turns out coffee was the only thing powering my thoughts and actions” phase of withdrawal, which according to reputable internet sources shouldn’t last much longer than a week.

Photo © Christian | Flickr

Photo © Christian | Flickr

Like many of the things I’ve given up (alcohol, lactose, oats, eating out, anything made “in a facility that processes…”), I may not be done with caffeine forever. Heck, I may not make it through the rest of the work week. But, though not necessarily permanent, it’s worth a try. In the meantime, know that although I’ve been posting more infrequently recently, I’m still here and still gluten-free. That, my friends, is permanent.

I stole the phrase “fun-free” from this post on Gluten Is My Bitch. Have you read her book yet? It’s funny!

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