Monday, May 10, 2010

Celiac 101.

ce·li·ac also coe·li·ac (sē'lē-āk')
adj. Of or relating to the abdomen or abdominal cavity.

[Latin coeliacus, from Greek koiliakos, from koiliā, abdomen, from koilos, hollow; see keuə- in Indo-European roots.]

I love words and I am from that disappearing breed of sticklers for spelling and grammar. So I'll start this blog at the very beginning (a very good place to start) and establish that it's not "celiacs" or "celiac's" disease, just as it's not "cardiacs disease." (But you can say celiac as a noun, as in "person with celiac disease.") Whew. Sorry. That's off my chest now and I feel much better.

Celiac disease is a hereditary autoimmune disorder marked by the inability to digest gluten, a protein found in wheat, barley, and rye. The immune system starts attacking the villi of the small intestine and this wreaks all sorts of havoc and unpleasantness. Someone with unaddressed celiac disease is at great risk for cancer, osteoporosis, anemia, infertility, and other serious problems. Symptoms vary widely and don't always present in a typical manner, so diagnosis may be extremely difficult. A blood test and intestinal biopsy are the current gold standard for diagnosis.

Until I was diagnosed, I didn't give much thought as to why I was suddenly seeing "gluten-free" on so many food labels. But it's not a trendy diet; the gluten-free diet is not remotely the same thing as low-carb or Atkins. For folks with celiac disease, gluten is poison and being gluten-free is being poison-free. We can't have "just a taste" because that's sort of like a tiny taste of Drano. Molecules are enough to cause intestinal damage. It's a zero tolerance situation and it is astounding to discover all the places where the enemy lurks (seriously, lip gloss?!). It's not a matter of "oh, she can pick out the croutons" because one breadcrumb can be enough to make trouble. We have to be careful about not only what we're eating, but how it was processed and how it was prepared. Being gluten-free is a serious game-changer and it requires constant, lifelong vigilance.

When I was diagnosed this past January, it was a total shock. "Beth! This is so interesting!" gushed my doctor. ("Interesting" isn't the word you want to hear in regard to medical procedures.) She had me tested on a vague curiosity and my tTG levels came back among the highest she'd ever seen. I had been feeling increasingly sick for at least 2 years but I was sure it was stress, malaise, or an overabundance of pad ki mao. I tried to eat well but couldn't identify the dietary culprit. Not only did I feel gross all the time, but I'd become accustomed to it; I'd forgotten what normal felt like. But I was certain I didn't have celiac disease!

So I was completely stunned and it only got worse as I researched the list of now-verboten foodstuffs. SOY SAUCE?! Only the most clever and vengeful god could dream up such a punishment for me. As a fiercely independent person (Sagittarius in the house), I resented the sudden restriction on my most basic liberty - eating! - and as a foodie I was devastated by the thought of not being able to dine and explore freely. I mourned for so many favorite dishes I would never taste again, and some early experiments with subdelectable gluten-free products left me teary and hopeless.

Now, lest you think this blog is nothing but wallowing, here comes the happy part. Mostly, as Shauna James Ahern of Gluten-Free Girl fame has written, it is so lucky to have a disease where (a) the damage is reversible, and (b) the only treatment is food! Instead of dwelling on what we can't eat, it's so much more productive to think about everything we can eat. Meats, fish, veggies, fruit, rice, potatoes, legumes, alternative grains - they're all a-okay. Thai and Indian food, two of my favorite cuisines, are still largely open to me, to my great joy. I've even discovered honestly fabulous gluten-free bread. It was a turning point for me to realize that much of what I now live without is stuff I really don't need to eat anyway. All that processed, super-refined stuff that's barely food? Cookies, muffins, French fries? I don't need that. Like most breakups, it's awful at first but soon you look back and wonder why you wasted your time with that jerk.

I am now more than 3 months gluten-free and nearly-dairy-free as well. Yes, it can be challenging, especially with dairy also on the hitlist, but in general it's rewarding to look healthier, to help my insides slowly recover from all that abuse, and to feel great about all the delicious REAL food I now eat. I've even cozied up to vegetables for which my disdain had been legendary (roasted tomatoes, I'm talking to you); who am I now to hold a pre-adolescent grudge against any foods I can still consume?! For further confidence-building on the matter of Real Food and the pitfalls of the Western diet, I recommend reading In Defense of Food by Michael Pollan if you haven't already done so. I was already on board the organic/sustainable/healthy train, but now I'm even more committed. My health depends on it.

I plan to use this blog to provide more information about celiac disease, to review and discuss products and restaurant experiences in the Philadelphia/Delaware area, and to share my adventures in living well on wheat-nothings!

Thanks so much for joining me.


  1. Dammit! I've been saying "celiac's" this whole time. heh.

  2. It's a super common mistake, even among people in celiac communities. I thought I'd just take a moment to be pedantic, since my dream in life is to teach the world to spell in perfect harmony. :D

  3. It's like how I secretly hope to teach the world that it's '80s and not 80's. (or other decades) Heh. :D

  4. ha! I found you via christy's blog. I love that your icon is spaghetti cat. AWESOME! I have tons of migraines, and found avoiding gluten has really helped alleviate the frequency/ severity (although I haven't been tested- it was more through trial/error)

    I'm originally from DE too, but am now out on the west coast... : D