What It's Like to Live With a Disease Everyone Assumes is Fake
If you can put yourself in those shoes, you know a little about what it’s like to be me – or any of the one in 133 Americans with celiac disease, an autoimmune condition in which ingesting gluten damages one's intestines. You might think that the hardest part about celiac disease is the diet – and you wouldn’t be entirely wrong.
However, partially thanks to the gluten free fad taking over our favorite restaurants, Hollywood celebrities and soccer moms, being taken seriously with celiac disease – a condition people often assume is fake or just a fad – is an even bigger challenge. I'm here with Entity Magazine (where this article first appeared) to set the story straight.
Doctors Say: “It’s All In Your Head.”
The challenge to legitimize your very real disease begins at the doctor’s office. I recently chatted with Shelley Case, R.D., who is the renowned author of “Gluten Free: The Definitive Resource Guide” and serves on the medical advisory boards for the Celiac Disease Foundation, Gluten Intolerance Group and Canadian Celiac Association. “Unfortunately the majority of individuals with celiac disease remain undiagnosed,” she says. “Also, many are misdiagnosed with other conditions such as irritable bowel syndrome, fibromyalgia or chronic fatigue syndrome to name a few.”
I’ve even heard heartbreaking stories of patients whose doctors told them: “It’s all in your head!”
As already mentioned, celiac disease is an autoimmune disease in which one’s intestines cannot properly digest gluten. This means that if you eat gluten, you get some nasty side effects…and if you keep eating gluten, you can experience major (and possibly fatal) health complications, such as nutritional deficiencies, neurological issues and cancer. However, celiac disease is way more complicated than that.
For one thing, no one knows what causes celiac disease. It can be genetic but the odds of developing celiac disease increase if the gene becomes active. For example, my father has the celiac gene but it has never become active while my own celiac gene activated when I was a senior in high school. Possible triggers of celiac disease include surgery, pregnancy, childbirth, infection or extreme emotional distress.
|The dad and I!|
If that doesn’t convince you, celiac disease is also what Shelley Case calls a “multi-system, multi-symptom disease,” which is why it is often so difficult to make an accurate diagnosis. Instead of being just a gastrointestinal disease, celiac’s symptoms are all over the map. Sure, you can get the “typical” symptoms of gas, bloating, constipation or vomiting. Or, you can instead exhibit more unusual signs like weight loss, fatigue, delayed growth or behavioral problems.
Symptoms can be even trickier in women – and at least 60 to 70% of currently diagnosed celiacs are women. In fact, while research is conflicting, some studies suggest that four to eight percent of women with unexplained infertility are undiagnosed celiacs. Besides affecting a woman’s chances to have children, undiagnosed celiac disease can also cause complications during pregnancy (including miscarriage and low birth weight) and increase a woman’s risk of low bone mass density.
What does that mean for you? Basically, if you have celiac disease but a doctor thinks your symptoms are “all in your head,” you aren’t the only one being put in danger. Celiac’s “fake” reputation is possibly hurting your future children too.
You Fit The “White, Skinny B*Tch” Stereotype
At the time I was diagnosed, I lived in San Diego, California. On the positive side, this means there were lots of “hip” restaurants making some bang for their buck on the gluten free trend. On the negative side? As celiac kept stealing more and more pounds from my already-thin frame, I fit the Cali girl stereotype – White, skinny and a “gluten free” aficionado – to a T.
|My college campus probably didn't help that stereotype...|
Four months after my diagnosis, I had adopted a strict gluten free diet, but I was still sick. When I was finally hospitalized, I weighed 83 pounds as a 5’3″ freshman in college. The doctors had no idea why I wasn’t healing like a “normal” celiac – and my fellow classmates couldn’t relate to wanting to gain a pant size.
I’ll never forget when, during my first week of college, I went to the caf with my hall mates. While they loaded up on pizza, I relied on my college’s meager “gluten free” section, which basically featured salad, veggies and lean proteins. As I looked enviously at the other girls’ plates, one gorgeous blonde stared back at mine, saying, “I wish I had celiac disease so I could be skinny like you.”
At the time, I was so shocked I didn’t say anything. I probably just laughed awkwardly, stabbed at one of the olives in my salad and pretended it was the girl’s face instead. The longer I’ve been diagnosed, though, the more I’ve realized that the Pizza Incident (as I like to call it) isn’t unusual.
Although only 1% of Americans have celiac disease, reportedly 1 in 5 Americans are eating gluten free. One of the most common motivations? Weight loss.
|I'd rather have those rolls...|
So, it’s not unusual for the college janitor to watch me make my “special” food and ask, “You so skinny. Is it…diet? Or, gene?” Or for a family friend to offhandedly comment, “Well, at least you’re not obese” while I’m watching the rest of our dinner party devour the restaurant’s free bread basket.
The saying, “Don’t judge a book by its cover” probably rose to popularity because people tend to do just that: judge by appearance. And, by appearance only, it’s easy for people to assume I’m eating gluten free for weight loss…and not just to survive.
Sometimes You Have To “Fake It” As A Celiac.
I’ll be honest, though. Sometimes, it’s not just others assuming that my disease is a fake fad. Sometimes, I have to misrepresent myself in restaurants just to make sure I can eat without being sick for days later. Shelley Case, who also has celiac disease, can relate to the struggles of eating out safely, saying, “People working in restaurants often do not understand the seriousness of this autoimmune disorder.”
So, when I walk into Chipotle, I don’t hold up the line any longer than I have to by giving the entire spiel on what celiac is and what gluten will do to me. Instead, I simply say, “I have a gluten allergy” and watch as workers wash their hands, change gloves and fix me a safe burrito bowl.
|We need better awareness for all of the above!|
Not only that, but “gluten free” doesn’t mean “celiac safe.” I’ve read accounts by restaurant staff that have made my stomach curl…mostly because my server might be just as (dangerously) clueless. One waitress shares how, one day, a chef accidentally placed garlic bread on a plate with a gluten free order. She picked it up, removed the garlic bread, and gave it to the customer. “What happened to that poor person??” she later asked herself. “This never would have happened with shellfish or nuts in the case of an allergy.”
Although celiac can also be fatal, I’ve always been grateful I don’t have an allergy. If I do eat a crumb of gluten, I’ll suffer for it – but it won’t kill me upon contact. In some ways, though, I’m jealous. With celiac, I have to constantly prove that I “really” need a gluten free diet. I don’t see people asking the same questions to those with peanut or egg allergies.
Fad Dieters Don’t Know What A Gluten Free Life Looks Like
I wouldn’t dare say that I hate the gluten free fad. As Shelley Case points out, the good news is that, nowadays, “there’s a greater awareness about celiac disease and the gluten-free diet among health professionals and the general public.” There are even more gluten free products available that, crazily enough, don’t taste like cardboard. In fact, now it seems like every retailer is trying to get a toe into the “gluten free” market, whether by labeling their naturally gluten free water or changing their formula, like Cheerios.
While the gluten free fad has received a lot of media attention, Case is right when she says that one of the biggest concerns for those with celiac disease right now is not “being taken seriously because of those jumping on the gluten free band-wagon. There is a huge difference between those who must follow a gluten-free diet out of medical necessity verses those adopting the diet as a lifestyle choice!””
|Cake has been this celiac's medicine for several years now!|
As a celiac, I don’t just eat gluten free – I live it. That means that I don’t just go to a cafe, order a salad and eat around the croutons. Living with celiac disease involves:
- Getting used to bringing your own “safe” food to every party, outing or workday.
- Learning how to politely tell dates that they must brush their teeth before kissing me goodnight. (My first boyfriend and I quickly learned that kissing after he ate gluten killed my intestines and the mood!)
- Paying 242% more for gluten-free products than regular, wheat-filled products.
- Getting “glutened” (or accidentally digesting wheat or wheat-contaminated food) despite all my precautions. Symptoms include extreme fatigue, stomach problems, rashes, extreme abdominal cramps, vomiting, headaches and everything in between. My symptoms usually last for a week.
- Learning how to balance going to school, working and cooking all my own meals after my college cafeteria couldn’t provide celiac-safe meals.
The first step to improving celiacs’ lives, however, is a cultural one. Everyone needs to realize that eating gluten free isn’t just a diet; for celiacs, it’s a life-saving form of medicine.
So the next time you see someone ordering a gluten free meal, don’t assume that they’re a fad dieter. Celiac disease is real – and so are its effects on a person’s health. And celiac disease needs to start receiving the recognition that every disease deserves.
*Although I wrote this post, it first appeared at Entity Magazine. Check out my other Entity articles here!*
*Also found at Wow Me Wednesday, RunningwithSpoons, ShareFest!*
Has someone ever questioned your need for a gluten free diet? Tell me your thoughts below!