I never made any sort of official announcement when I was diagnosed with celiac disease. Word got around, of course, but I wasn’t really up for the Facebook post: “hey guys, turns out i was dying because of gluten lol so now i cant eat pizza :’(”
(12 people like this)
Yeah, no thanks. I was too busy crying into my pillow and quietly mourning Kraft Mac & Cheese.
But now it’s been a couple years (three, actually), and those who’ve spent a bit of time with me know that I have no problem talking about it now. Which is a good thing, because I actually get asked about it pretty frequently. I think that’s great! I love that people want to educate themselves about this stuff. Celiac disease is estimated to affect 1% of the population (no, seriously), so it’s definitely worth learning about. Maybe one of your coworkers has it… maybe one of your family members has it… or maybe you do. Did you know that an estimated 83% of Celiac sufferers are undiagnosed?
That was ridiculous. Sorry. Haha! (But that figure is accurate).
Anyway, here are some answers to questions folks often ask me about life for the gluten-challenged.
What is celiac disease?
Celiac disease is an autoimmune disease. Every time I eat gluten, which is a protein found in wheat, barley, and rye, my immune system fails to recognize it as food. Instead, it issues an “immune response”—that is, my body thinks the gluten is a bad guy and attacks. My intestines get caught in the crossfire, and get damaged. Over time, if untreated, this damage can accumulate and inhibit my ability to absorb nutrients from any kind of food.
In addition to malnutrition, celiac disease is associated with an increased risk of lymphoma, osteoporosis, dermatitis, infertility, and bowel cancer, and premature death. Fun, right? So fun.
A person doesn’t necessarily have celiac disease from birth, and it’s not entirely known what causes a person to develop it. There is a known genetic component, but there is also believed to be an environmental component.
What happens when you eat gluten?
I described above what happens on the inside, but the way that manifests externally is going to vary from person-to-person. That’s one of the reasons celiac disease is rather hard to diagnose; there are a huge number of potential responses, and no two peoples’ symptoms are exactly alike.
When I eat gluten, I usually have a grace period of about 15 minutes before I start feeling anything. Then I start to feel really full and really hungry at the same time. The hungry feeling is how I know it’s definitely a “gluten thing.” Then within about 5 minutes things progress to debilitating abdominal pain. Sometimes I throw up from the pain and sometimes I don’t. I prefer it when I throw up, because it usually helps. I really wish I were exaggerating when I use the word “writhing” here, but I genuinely do spend about an hour writhing on the floor of the nearest bathroom because I’m in too much pain to move, but too much pain to be still. If an hour passes without any chunder, it’s fairly safe to assume that it’s not gonna happen, so I might make my way to the nearest bed or couch and try to sleep through the rest of the ordeal for the next several hours.
When/how were you diagnosed?
I was diagnosed during my sophomore year of college because I started experiencing nausea after meals. It escalated until I couldn’t eat more than a few bites of food before I got really sick. So, my doctor administered a blood test, and it turns out that my blood was FULL of antibodies that untreated celiac patients have. The nurse told me this via voicemail. Not exactly the best bedside manner, but I digress.
To confirm the diagnosis, I went to a specialist and got an upper endoscopy. Basically, they shoved a camera down my throat and looked at my intestines and did a biopsy. My intestines looked so gnarly that they didn’t really even have to wait for the biopsy results to know what they would be. They had the decency to tell me in person that time, at least.
Then they did a bunch of tests to measure my vitamin levels and bone density, and check for complications like bowel cancer (so cute) to see how badly my body had been ravaged prior to my diagnosis. Fortunately, aside from some pretty low vitamin levels (which I still struggle with, and probably will for life), I came out all clear.
How hard is it to deal with?
When I’m cooking for myself, which is most of the time, the dietary restriction is a non-issue. There’s plenty of gluten free food out there: meat, veggies, dairy, corn, rice, etc. Traditionally “gluteny” food items like bread and pasta have decent gluten free alternatives that I’ve grown used to. I honestly hardly even think about it most days.
Most restaurants are fairly accommodating, too, which is great. I’m most comfortable with sushi restaurants, because of how few ingredients are typically in a dish—it’s easy to anticipate whether something will be safe to eat. Chinese food, on the other hand, is essentially impossible (all those sauces!), and I haven’t attempted it since I was diagnosed.
That said, mistakes happen. I’d say I get seriously glutened once every 6 months.
What’s the worst part about it?
No matter how hard you try, gluten is going to creep in. A crumb isn’t enough to cause an external reaction in my case (whereas a teaspoon is), but the internal reaction is a guarantee. Which means that over time, whether I display the classic “gluten episode” symptoms or not, I’m still hurting and re-hurting myself—and increasing my risk of complications each time. That’s a scary thought. And there’s really nothing I can do about it, so I try to just be careful and not pay it mind.
Aside from that, I get a lot of anxiety about going out to eat with people. I don’t like drawing attention to my little issue, so having the “I just need to make sure there’s no gluten in this—can you ask the chef?” conversation in front of others makes me wildly uncomfortable. Which is silly, because people are always understanding.
How do you feel about fad dieters?
I LOVE THEM! Fad dieters, I love you. You have driven the demand for gluten free food through the roof. You made it possible for me to eat pizza again.
And honestly, I’ve only really ever had one incident where someone assumed that I was asking for gluten free food because I “wanted to eat healthier”—everyone else has been totally respectful and taken it seriously by default. Sure, there have been some jokes made on tv about people who eat gluten free being hysterical idiots, but I haven’t seen that attitude reflected in real people. I really appreciate that.
What’s something about having celiac disease that most people wouldn’t know?
- I’m legally disabled! Isn’t that weird?
- I can get a tax refund because gluten free food is so expensive. Except it’s a huge pain in the ass and not worth it.
- My alcohol tolerance fluctuates like crazy because my ability to absorb it varies by how recently I was last glutened.
- I can’t lick envelopes.
What if you only eat a little?
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