Tag Archives: associated autoimmune diseases

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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On time management

To-do lists are great. In fact, 96 percent of people who keep them say their lives are better with to-do lists. (Go figure.) I think I’m part of that 96 percent, but I’m certainly among the 50 percent who write down tasks they’ve already done just to be able to cross them off. I can’t help it; it’s thrilling.

Herewith, then, my most recent list.

Today I:

checked2Looked up my latest symptoms on WebMD

checked2Learned more than I remotely wanted to know about “pulsatile tinnitus

checked2Cross-examined self for evidence of hypochondria

checked2Decided symptoms actually exist

checked2Complained about symptoms

checked2Blogged about symptoms

checked2Tweeted about symptoms

checked2Googled autoimmune diseases associated with celiac diseases

checked2Remembered a few other symptoms and Googled those, too

checked2Tried to determine whether my hair is thinning

checked2Decided it’s too soon to tell

checked2Worried anyway

checked2Searched insurance database for PCP in my new neighborhood

checked2Got discouraged with system and switched to Google

checked2Bemoaned lack of reliable Yelplike system for finding new doctors

checked2Got discouraged again and gave up for the day

Tomorrow I’ll:

unchecked box

Actually do something about it.

Despite appearances, this post was not sponsored by Google. Do you spend more hours Googling things than solving them? If not, how do you manage your time (and self-care)? Do you keep a to-do list? Check anything good off lately?

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Meet Celia: A Gluten-Free American Girl

Last week, we took a look inside the lunch box of a modern American Girl doll. There were sandwich skewers. The times, they are a’changin’—why, the only accessory my Samantha doll had was a comb.

The accessories aren’t all that have kept pace with our modern era. The books have, too. They used to focus on the historical American Girls and followed a great six-book formula: we meet the protagonist, she learns new things about herself and the world, she overcomes obstacles, she comes out of it a changed and better person. All between the ages of nine and eleven.

American Girl TodayThese days, they publish under the series American Girl Today. There are fewer books for each girl, and they have modern names like Nicki and McKenna. They pose against technicolor backgrounds doing modern-girl things like gymnastics.

I don’t mean to knock the new books—I haven’t even read them. But they did have a good thing going with the old series. In honor of the beloved classic formula, I hereby introduce to you a new American Girl. Like more and more girls (and boys) today, our heroine must eat gluten-free. I’ve dubbed her, for obvious reasons, Celia.

This is her story.

Meet Celia: An American Girl

Celia awakens on a hospital cart, still groggy from the sedative, and is told, “We think you have it.” A week later, it’s confirmed: she has celiac disease. Her life will irrevocably change. It is a sad beginning.

Celia Learns a Lesson: A School Story

The moral of this one is: never trust the hot lunch. Celia is glutened again and again until she finally agrees to start brown-bagging it.

Celia’s Surprise: A Christmas Story

At her first gluten-free Christmas, Celia is shocked by the beany aftertaste in the sugar cookies her mother has prepared, but pleasantly surprised to learn that most candy canes are gluten-free.

Happy Birthday, Celia!: A Springtime Story

In which Celia learns that she probably only has this stupid disease in the first place because she was born in the springtime. However, her King Arthur Flour GF birthday cake (like mine!) is pretty tasty.

Celia Saves The Day: A Summer Story

Celia can’t eat what the other girls are having in the camp mess hall, and when they make pasta necklaces she feels understandably left out. Still, it turns out to be worth it when, uninflamed and energized, she joins her tentmates for the end-of-summer relay race. At the finish line, she raises the baton in victory.

Changes for Celia: A Winter Story

Despite the chilly weather, Celia begins to feel awfully thirsty all the time, even while consuming jugs and jugs of water. She also seems to be peeing it all out every twenty-five minutes. After dropping an unneeded fifteen pounds, Celia visits the doctor and learns there will be changes indeed: like 5 to 10 percent of her celiac peers, she has type I diabetes. She’ll need to not only avoid gluten but also learn the ups and downs of managing her blood sugar. She’s a positive little thing, though, with a pioneering American spirit, so to her it’s all just another exciting challenge.

Do you admire Celia’s unremitting pluck, or do you sorta hate her for it?

I’m on the fence. I don’t think I have diabetes, per se, but after reading Celiac Disease: A Hidden Epidemic (which claims that the likelihood of having an associated autoimmune disease rises to 30 percent for those diagnosed after the age of 20…gulp), I’ve begun my fretting in earnest. If I do turn out to have something else on top of celiac disease, I won’t be taking the news cheerfully.

American Girl logo (with Molly)

You’ll note I didn’t place Celia in a particular historical moment like her peers, colonial Felicity or Victorian Samantha. Those historical dolls are now being laid to rest, one by one, along with their accessories, in the “archives” (though the books, fortunately, will remain in print). Samantha, my favorite (and many of yours), was “retired” in 2008, and it was recently announced that Molly will be next.

We must accept that the past is past, unsaleable to the girls of today. We must look forward to new American Girls who better resemble the girls of today and tomorrow.

Celia lives at a time when celiac disease is better understood and more researched, but still diagnosed late, with attending complications, and incurable except by means of a lifelong diet whose cred is being rapidly eroded by claims about “fads.” In short, she lives today. We can only hope that one day, with celiac and other autoimmune diseases vaccinated into oblivion, Celia too will be rendered a historical figure, hopelessly out of date, a relic fit only for the archive.

What are your summer, spring, and winter celiac stories? What changes and surprises have you encountered (birthday or otherwise)? Do you have other autoimmune diseases and were you diagnosed before or after learning you had celiac? Have you come across any great new celiac-disease-themed kids’ books recently?

P.S. There’s still time to enter my giveaway (it runs through Tuesday) by taking the celiac disease personality quiz and reporting your score. Check it out this weekend, if you aren’t spending it at the GFAF Expo. If you are, see you there!

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I’m drinking coffee again. But why?

You were all super supportive when I announced I was giving up coffee. Thank you.

Buoyed by that support, I made it all the way from May 12th to June 23rd: 6 weeks total. I was coffee-free for my birthday; my sister’s graduation; my move from my former apartment to my June sublet; many, many, many workdays; a few weekend nights later than I thought would be possible without caffeine…

And then I caved. One tiny espresso one day, a small midafternoon iced coffee the next, a large midafternoon iced coffee the next, and now here I am, up to two large iceds a day.

Up to here, I am not. Yet. Photo © Josh Greenstein | Flickr

Up to here, I am not. Yet.
Photo © Josh Greenstein | Flickr

Since you’ve been by my side since the start of this grave undertaking, I felt I owed you an explanation for my failure to continue. So here goes.


Why I’m back on coffee:

1. Because each cup is worth an hour of sleep.

2. Because it’s gluten-free.

a. And I’ve sacrificed enough.

3. Because it’s too hot not to drink iced coffee.

4. Because it’s good for the brain*.

a. And the heart.

i. And the liver.

A. And the gallbladder.

5. Because it prevents diabetes.

a. And cancer.

i. And depression.

A. And cavities.

6. And I can use all the help I can get.

7. Because I have a desk job, where not only is it okay if I get up to pee every 25 minutes, but it’s actually a welcome stretch break.

8. Because it’s cheap.

a. Except when I buy it from Birch.

i. And in that case it’s worth every penny.

9. Because it smells good.

a. And tastes good.

i. And makes me look good (black coffee—so cool).

10. Because espresso cups are adorable.

11. Because it’s referenced in my OkCupid profile, which I’m too lazy to change.

a. Because the reference makes coffee sound like such an integral part of my life that it’s awkward to explain I’m actually not drinking it right now.

i. Because coffee is an integral part of my life.

12. Because, turns out, coffee isn’t bad for (my) digestion.

13. Because it makes me think faster.

a. And type faster.

i. And speak faster.

A. And, potentially, live longer.

14. Because it’s better than aspirin.

15. Because I’m not drinking alcohol right now either, and meeting people for a cup of water was getting old.

16. Because the experiment also got old.

17. Because cross-reactivity is bogus.

18. Because it’s a valid form of self-care.

19. Because everyone else is doing it.

20. Because it (sort of) supports the livelihood of one hundred million people worldwide.

21. Because I don’t have to drink so much to feel effects anymore.

22. Because I reassured myself I could live without it.

23. Because I missed it anyway.

24. Because I wanna.

25. Because I can.


Why I’m not back on Diet Coke:

Come on.


Thanks again for your support! Anyone else give up (or take back) anything good lately?

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