It's Celiac Disease Awareness Day,

And I Doubt You're Aware

one of the many gluten free food labels

I was born with Celiac Disease. I know, I know, studies show you can’t be born with it, but I promise you, I was. My mom’s was triggered when she was pregnant with me, and my grandfather’s a few years earlier.

I was failure to thrive until I started eating gluten free immediately following my biopsy on Oct, 31, 1998, I had just turned 3 back in June.

Things were so bad, I was so thin and frail, that one of my mom’s friends actually called child services cause she was convinced I was being starved. My mom tells me that child services came and promptly left when they saw how baby-proofed the house was.

My pediatrician promised my mom I would be as tall as her (I’ve well surpassed her now), she cried cause it just didn’t seem possible, it felt like he was tricking her.

One of my earliest Celiac memories was in kindergarten. It was pizza day. Of course, there was nothing I could eat, but my mom heard about it at snack time and she raced around to make me a “pizza.” Gluten free pizzas didn’t exist in 2000, so she put tomato sauce, cheese and black olives on a corn tortilla and brought that to school so I had it in time for lunch.

I went to the front desk and they handed me the container. But I was a scared kid, I’m still a scared adult. If I can’t see the ingredients for myself, read the list, I’m not eating it. And so, I didn’t. My mom put so much hard work into making sure the pizza was there for me, but I was too scared to eat it. And, for the record it wasn’t until a few years later that I even learned my “pizza” was actually called a quesadilla.

I also remember the first time I had string cheese, it was at a Celiac conference. It was the same day I learned that ice cream is what goes in an ice cream cone. I mean, I couldn’t have one, why would I know the answer?

I think I’m getting a bit ahead of myself though, cause, chances are you don’t even know what Celiac is. I mean, okay, I’m sure you think you do. It’s an allergy or an intollerance or maybe just people being annoying who want to get special treatment (yes, I do hear that last one, unfortunately.)

But it’s none of those things, even though I would have sworn up and down I had a gluten intollerance if you asked me as recently as college.

Celiac Disease is an autoimmune disease. Eating gluten free is the treatment plan. Gluten is a protein, and that protein basically shuts my body down. If I ingest gluten, as little as 20 parts per million (yes, that’s much much less than a crumb), my body is unable to process it. It can’t turn into nutrients and neither can anything else.

Villi are small finger-like protrusions in the small intestine. This is how nutrition gets to your whole body.

These are healthy villi. Nutrients goes in through the side, but what if the sides no longer exist…

This is the villi of a Celiac not on a gluten free diet. It doesn’t matter if you eat non gluten things, that one little spec of gluten, destroys your entire body.

Symptoms vary. Some people have no outward symptoms at all. I was not that lucky. I won’t go into detail, but sufice it to say, it’s why I have emetophobia.

But there are also other longer term symptoms. I was not getting any nutrients in my body for the first three years of my life, somehow, by some miracle, my brain developed mostly okay, but, I have really bad brainfog and always have. It got me in trouble in school a lot. A lot of things related to Celiac did.

Every year they find some new chronic illness that is linked to Celiac, and while I don’t have them all, I have a lot of them.

I think the worst, and most expensive part of Celiac Disease is how weak my tooth enamel is. It doesn’t matter how well I brush or floss or whatever, I still have dozens and dozens of cavities and there’s not a whole lot I can do about it.

Of course the other worst part is how unseriously it’s taken in the US. I can’t take most medication, because I don’t know if it contains gluten, and yes, sometimes it does. There’s a bill in Congress right now called the ADINA (Allergen Disclosure in Non-Food Articles) Act that, if signed into law would require pharmacutical companies to actually test their products for the top 9 allergens. I have POTS and I should be on beta blockers, but all I can find is “this product has no gluten containing ingredients.”

Great, my favorite phrase. 20ppm doesn’t have to be a gluten containing ingredient, it could just be a speck in a drum that wasn’t cleaned well enough, or a conveyor belt with too many grooves.

And on food, it’s not much better.

If this looks confusing, that’s because it is. Each of these labels means something different. I’ve never even seen the label at the bottom right, but don’t worry, cause these are just SOME of the labels, the ones that Beyond Celiac feels safe recommending. Here’s some more info on the disaster that is gluten free labeling.

And, no, there isn’t any specifications for how to do these tests either, so one company could do the test one way, while another company did it another way. And reactions from being glutenated could last anywhere from hours to months. Yes, I did say months.

And then there’s the Celiac Disease Foundation, which is more focused on finding a cure, right now, than working on media, representation, or this bill. I don’t want a cure. I don’t care to eat gluten. It won’t cure my brain fog or my weak enamel. It won’t get rid of POTS or Fibromyalgia or GERD or Endometriosis, or anything else Celiac gave me. It would make food cheaper, but shouldn’t they just be working on lobbying state governments and congress for laws that stop price hikes for gluten free food, cause it’s not a fucking fad, it’s what I need to survive.

I want the Foundation to care about the incredible new law in Illinois that requires anyone who handles food to go through a training on Celiac. I want them to care about the California bill and the fact that it doesn’t even NAME gluten, which is fine cause it’s frankly a dangerous bill that doesn’t have any sort of parameters for top 9 allergen menu labeling.

I want them to create statements and offer trainings to writing staff every time another show makes fun of someone eating gluten free, or worse yet someone who actually says they’re Celiac (it’s always the nerd or the most annoying character in the episode, other than House and Royal Pains, they did well.)

I’d apologize for complaining, but I’m not sorry. This is Celiac Disease Awareness Day, after all, so now you’re aware of my experience as a Celiac.

If you are an author or writer or playwright, consider adding a Celiac character. Not as a joke or the nerdy kid, but just as another thing a character has to deal with. It’s incredible that something that would have killed me if I hadn’t been diagnosed when I was, is treated like a punchline, if it’s mentioned at all.

Is it one of my disabilities? I think so, the world is less clear on that. But what I know for sure is that it’s an autoimmune disease, not an allergy, and not an intollerance (though the fact that many people with celiac DO have a wheat allergy, and the fact that cerfied gluten free no longer means wheat free, if they removed the gluten protein, is infuriating)

And please please please call your member of congress and your Senators and tell them to support the ADINA Act, it WILL save lives.

Now, go spread your new awareness so others can learn this too!

And feel free to ask me any questions in the comments!