Celiac Disease 101

The problem with Seasonal Affective Disorder is that even though I have the "crippling depression" part of it treated, the waning sunlight gives me other wacky brain hiccups that SSRIs don't touch. For example, during longer days I can plan a post in my head and write it later, but once Fall hits I'll plot a bit and then my brain will reset like a shaken Etch-a-Sketch, leaving me sitting there going, "wait, what?"

The solution to this is obviously to make myself write for real when I have the time rather than trying to do it in my head, but then I'm tired after a morning of, "Do you want cheese? Yes? Why are you crying? Now you don't want cheese? It's okay!" (Seriously, a toddler is basically just the most rapid-cycling bipolar person you'll ever meet) and when nap time rolls around, I usually feel entirely justified spending all of it on The Hairpin.

I'm told you can make new habits through repetition, though, so here I am typing away as Baby Razor sleeps.

I thought I'd explain a little bit about how celiac disease works, since most people (myself included, prior to two months ago) only know that it means that those who have it can't eat wheat. Keep in mind: I am not a scientist, and everything I'm about to tell you, I got from the internet. This is absolutely the dinner-party explanation. If you'd like to learn about celiac disease from people who didn't major in Medieval literature, you should go here or here. My version will have more swearing though.

Okay, so people with celiac disease cannot eat wheat, barley or rye; or any products made with wheat, barley, or rye; or any products made with byproducts or derivatives of wheat, barley, or rye; or any products grown near or processed with or near wheat, barley, or rye. Does that sound confusing? IT IS. Do you know how many things are made with/from wheat or barley? (Rye: not so much.) The short list includes soy sauce, malt vinegar, some sweeteners, vitamins, and most pre-packaged meals and snacks, Plus pasta, baked goods, bread, and, oh, absolutely anything that goes through a plant that also produces products containing wheat.

I thought that last one was just precautionary until Baby Razor got sick from eating black beans that were processed in a place that also processes wheat. I was like, "There's nothing in black beans but black beans!" and didn't check the label. Which leads to my second point about celiac disease: It is amazing at making everyone around the sufferer feel like an asshole. Despite tons of research and (we thought) careful checking, Baby Razor's mom, dad, grandparents on both sides, and aunt have all accidentally fed her gluten at least once. The only solution is to become completely obsessive-compulsive about reading labels or to grow all of your own food. And since my backyard is about twenty feet square, I've done the former.

So, why can't celiac patients eat wheat/barley/rye? It's because they contain a protein called gluten. People with celiac do not have an allergy or "sensitivity" to this protein--they have an autoimmune disorder. Here's the difference: with an allergy, your immune system identifies a foreign body as dangerous and attacks it. With an autoimmune disorder, your immune system attacks your own body. When people with celiac disease have gluten, the immune response attacks their small intestine, damaging it and keeping it from absorbing nutrients into the body.

In plain English, if you have undiagnosed celiac disease, you're malnourished no matter how healthy you eat, because your small intestine is fucked. No one used to worry about this possibility, though, because doctors thought celiac disease was super-duper rare and people who had it all had really obvious symptoms. In fact, until the last decade or so, med students were told they'd probably only see one case of celiac in their entire careers, so you know they didn't pay much attention to that section of the book.

Yeah, it turns out that's entirely wrong. This fact sheet lays out the many, many ways in which it's entirely wrong. I'll just give you one of the pull quotes: "Celiac disease affects 1% of healthy, average Americans. That means at least 3 million people in our country are living with celiac disease—97% of them are undiagnosed." That's 2.9 million people walking around, thinking they're all good, when really they have an untreated autoimmune disorder that can lead to osteoporosis and higher rates of some kinds of cancer. That is fucking crazy! I still haven't gotten over how crazy that is.

Sweet Jesus, this got long. I think stop here and do a second part tomorrow. Coming up: Diagnosis! Treatment! How to deal with insensitive assholes! Poignant anecdotes about my baby! More swearing!