What It's Like to Live With a Disease Everyone Assumes is Fake

Imagine that every time you walk into a restaurant, you’re putting your life in the chef’s hands. Imagine having to give the same medical spiel – “I have celiac disease. Even a crumb of gluten will make me extremely sick” – anytime you order food. And imagine telling the waiter you need a strictly gluten free meal…only for him to look and you and say, “Gluten free? Now, do you really need it?”

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.

What It's Like to Live With a Disease Everyone Assumes is Fake

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.

casey the college celiac
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.

casey the college celiac
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.

casey the college celiac
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.

Is it sad that celiacs – or gluten intolerants – often have to misrepresent themselves as a safety mechanism? Completely. But that isn’t the only part of restaurants’ gluten free protocols that need to change. As Case explains: “When you ask for the gluten-free menu, servers may indicate they have ‘gluten aware,’ ‘gluten friendly,’ or ‘no added gluten’ options instead. This makes it difficult for people with celiac disease to know whether their meal will be safe based on these menu terms.”

casey the college celiac
We need better awareness for all of the above!

Not only that, but “gluten free” doesn’t meanceliac 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!””

casey the college celiac
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.
I have hope that, one day, living with celiac disease will be easier. Clinical trials are testing a pill that would decrease intestinal damage caused by cross contamination. Researchers are also investigating alternative treatments ranging from enzyme therapies to preventing celiacs’ inflammatory response to gluten to a vaccine, says Shelley Case.

What It's Like to Live With a Disease Everyone Assumes is Fake

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!




Comments

  1. I know exactly what you mean Casey; I'm not celiac, but I've definitely been more and more thankful as I have family members who have it, because it's helped me understand people who do have it and really take it seriously. Keep talking about this, because it's so important for us to understand.

    ReplyDelete
    Replies
    1. Thanks for the thoughtful comment. I'm sure your family members were lucky to have as supportive and educated a family member as you.

      Delete
  2. I didn't realize that celiac was an autoimmune disease.I have Rheumatoid arthritis, an autoimmune disease attacking my joints. I try to eat gluten, dairy and sugar free to help ease my pain and I can empathize how hard it must be to take safe food with you everywhere. I try to do that as well for parties and it's hard. And I don't have to make my husband brush his teeth before we kiss. I blog about living with chronic illness too.stopping by from SITS Sharefest.

    ReplyDelete
    Replies
    1. Glad I can help clear the waters! Celiac is def a complicated disease to understand. And thanks for blogging about chronic illness! We always need more awareness.

      Delete
  3. Hi Emily, Thank you for writing this! My stepdad has Celiac also. While his symptoms are not as severe as yours they still cause him a great amount of discomfort.

    I did want to say that as a server who also knows about Celiac I've helped lots of people order Gluten free meals. I've also been pulled away from my tables so I could help other servers customers and I don't mind it at all. What really drives me nuts though is when someone tells me they're 'allergic' then I spend extra time with them and the chefs to get them a proper meal. Then they order cake for dessert! Or eat a piece of bread from the basket. I do remind them there's gluten in it and they almost always says "I think it'll be ok" or "a little won't hurt". *grrrr* What they don't know is that I know the truth...a little does hurt! But sadly their 'allergy' lie is what is hurting people who really do have an allergy.

    The thing is that while I understand many other servers don't, so after they see this happen all the time they believe it so they won't be as diligent with food prep. I've seen servers just pick croutons out of salads. Not ok.

    Unfortunately the allergy lie is often recommended on gluten free forums. I found this out while looking for recipes. They think it makes servers take them more seriously. I think it makes them a jerk. Tell me you're on a special diet and I'll still accommodate that. I am working for a tip after all!

    Ok...sorry for the book, just wanted to explain why some servers seem to think gluten is not that big of a deal.

    Lisa

    ReplyDelete
    Replies
    1. Hi Lisa,
      Thank YOU for sharing your perspective as a server! I always SOOOO appreciate when servers get it and I hope there will be more like you in the future!

      Casey

      Delete
  4. I understand what you mean. My problem is Fibromyalgia and pretty much everyone thinks it's something made up probably by lazy people. We aren't lazy, we're living with chronic pain every single day. My level of pain is nowhere near what others with Fibromyalgia experience but it's still there. All the time. I have a few friends whose kiddos have celiac disease and I'm going to share this post with them. Thanks!

    ReplyDelete
    Replies
    1. Amen to that! Fibromyalgia is so misunderstood, even in the medical community. Hope you're doing well and keep kickin' fibro's booty! :)

      Delete
  5. I don't have Celiac disease but I understand the thought that people that don't know what you are going through think you fake it. I have fibromyalgia and IBS (both are mentioned in this post). I was also tested for Celiac but they came back that I didn't have it.

    I hope you continue to stay healthy and that more restaurants start to offer Gluten free options.

    ReplyDelete
    Replies
    1. And I hope that society's (and the medical community's) understanding of fibromyalgia improves in the future as well :)

      Delete
  6. Kind of like Lisa who commented previously, I worked as a server in a sushi restaurant for years, and I definitely know about Celiac - one of my old classmates had it and it was so tough for him. When this "gluten fad" came out it was ridiculous. You would have people saying they have a gluten allergy, only to have them order beer or cake. I've waited on several people who legitimately had Celiac disease, and they definitely know what they can and can't eat and make sure to ask about it. They ask what's in the various sauces to make sure they can have it, how it's prepared, etc, which I was fine with. I'm happy to help customers find gluten free options. But then you have the fad dieters coming in asking me if rice is gluten free, being shocked that there was such a thing as gluten free soy sauce when I bring it to the table. It was ridiculous. It's a shame people like that discredit your disease, and I'm so sorry you get awful looks from waitstaff when you say that you can't have gluten. I hope that this fad dies down and people learn to respect your disease!

    ReplyDelete
    Replies
    1. I always love hearing the perspective of people involved in the restaurant business. As frustrating as fad dieters are for people with serious food allergies or celiac disease, I can imagine they can be just as frustrating for the waitstaff who don't know if someone really has a serious allergy/illness or is just saying they do.

      Delete
  7. Cultural change is always the hardest to make ;(
    Sending all positive thoughts your way and hoping your everyday life will become easier. I don't have celiac disease, but I suffer from IBS syndrome and I've found your your blog very informative. And I love all the colorful recipes :)

    Hugs,
    Mila

    ReplyDelete
    Replies
    1. Hi Mila,

      Thanks so much for your kind comment. IBS is definitely not easy to deal with either, so I'm wishing you the best of luck and most delicious of food :)

      Delete
  8. I have been struggling with this for a year and a half and it keeps changing. I seem to be sensitive to a lot more than gluten. It's been a nightmare! I can't eat without suffering in one way or another! It's a lonely and desperate place to be.
    I wish I could just know what I can and can't eat. Then I can be safe.

    ReplyDelete
    Replies
    1. I can totally relate, Roxanne. The way I explain it is that, because I realized how bad I was feeling by eating gluten, I'm more sensitive to realizing what else I'm eating that's making me feel bad - like dairy, eggs, etc. I have wished far too many times that I was born with a "CAN EAT" list stamped on my forehead (or stomach, preferably). All I can say is that I'm wishing you the best of luck and know that you are NOT ALONE. And I'm always here to talk as needed :)

      Delete
  9. Here in Australia it's pretty good now. But there are events (particularly funerals) where there is NO chance you'll be able to eat if you are coeliac, and that can be difficult when it's a long day. For things like that, I have a banana, rice crackers and these nifty little long-life French casserole things in my big handbag. Does anyone else get itching skin and hair loss too? Roxanne, have you looked at fructose? I find onions and strawberry can be a problem, also eggs and chicken, I don't know why. Also Casey, I've been on the diet of necessity for about 12 years, still quite overweight. I find alot of gluten free alternatives are very high in sugar and fats.

    ReplyDelete
    Replies
    1. I've always wanted to visit Australia - I've heard it's great with gluten free! And I totally know what you mean about gluten free products not being the healthiest. It seems that, when cooks remove gluten, they have to replace it with something...usually sugar, oil or fat! And I also avoid onions (as part of the low fodmap diet, which has definitely helped me). Sending you the best of gluten free luck and food!

      Delete
  10. I experience not only the fatigue and stomach issues, but also severe pain and swelling in the back of my head. It's very scary and very dangerous.
    The same way gluten can destroy my intestines, it can destroy my brain.
    I have a few "safe" places to go to eat here in the Cleveland, OH area, and for that I am grateful. Top chefs open restaurants here and seem to be very versed in gluten allergies and celiac. I tend to stay away from processed gluten free foods, as they have some of the same affects on me as gluten. I have find my body has a hard time breaking down any processed carb or even now rice, which may be due to the damage already done by gluten.

    ReplyDelete
    Replies
    1. It's amazing how gluten symptoms can differ between people - that definitely sounds terrifying! I'm sorry to hear about your struggles, but I hope you are doing better now. It's definitely not easy to find safe gluten free restaurants (even in "gf-friendly cities" like LA, chefs often have a gf menu that isn't celiac-safe). I hope you have lots of gluten free (unprocessed) goodies in your future.

      Delete
  11. Hello,

    Firstly, a great article to read and helps others to realise they're not alone with these daily struggles.

    I unfortunately do have Celiac disease and it drives me mad, I feel like such a pain when eating out. So many people don't get it and the severity of the disease. Trying to explain thats it's not an allergy but an auto immune disease and it's potential to cause serious health conditions.
    It's not just eating out but at home too, having to buy and use separate items around the kitchen when preparing meals.

    I don't know anyone else who suffers with this so it's a relief to hear/ see that others are out there going through the same annoyances.

    Thank you for sharing your experiences and raising awareness.

    ReplyDelete
    Replies
    1. Thanks for sharing your story, Gemma. Celiac definitely has its challenges and it can be super frustrating having to explain your dietary limitations over and over. Sending lots of gluten free love your way!

      Delete
  12. Hi Casey,
    Thanks for this informative post. I did not know people assumed it was a fake although I had heard of the idea. Congratulations! Your post won the Inspire Me Monday Linky Party. You'll be featured on my site tomorrow.
    Janice

    ReplyDelete
    Replies
    1. Thanks for the feature and the kind words, Janice. Always love your link party!

      Delete
  13. mm the breakfast parfait looks soo good! I'm a granola addict too ;)

    ReplyDelete
    Replies
    1. Always happy to meet other granola addicts ;)

      Delete
  14. Oh wow, I never actually heard of this symptom so it's actually new to me. I was so intrigued and shocked by all the things you have to pay attention to. That list really made me a bit heartbroken. But I am proud of you doing your own research, learning, and really trying to spread awareness on this. I thought it was really rude of one of your classmates telling you that she wishes she would be like you to be skinny. This post totally changed how I thought about people who look for only gluten-free food. I actually didn't really know the difference until I looked it up just now while reading this.
    I am lactose-intolerant, which isn't as severe as your case, but I still have to be careful when eating some. I remember being so excited when they made almond and soy milk so I can finally drink milk. I probably haven't drank milk almost the past 5 years because I got sick from it.
    Overall I want to thank you for this article, it was really touching.

    ReplyDelete
    Replies
    1. Thanks for sharing your story, Claire, and for the kind words! Regardless of what dietary limitation we have, it can definitely be very frustrating when people don't understand or we don't have any options. Sending lots of dairy-free love your way!

      Delete
  15. This was such a great an informative article. I knew what celiacs disease was prior to reading, but I don't think I truly grasped how hard it was for people with it. As a recipe blogger, it will definitely make me more aware of labeling ingredients properly. And after reading the symptoms, it makes me wonder about my own gluten sensitivity- while I don't have severe reactions, I have experienced some of the symptoms you mentioned after eating gluten. I tried to do GF for a few months, but being vegan, one problem I ran into was most of the GF products contains eggs. Anyway, thanks so much for this article, it really opened my eyes.

    ReplyDelete
    Replies
    1. Hi Randi! Thanks so much for commenting and I'm so glad that my article could help spread some awareness. Gluten intolerance is definitely very real in some people, though I would suggest you ask your doctor to be tested for celiac disease (a simple blood test is the first step) before trying to go gluten free. A lot of gf products do have eggs, but I've found some real winners who don't. Some of my favorites are: So Delicious (yogurt and ice cream), Daiya Cheese (cheese, mac n' cheese, yogurt, etc), BFree Foods (gf and vegan breads, pita breads, etc). Hope this helps!

      Delete
  16. WOW. While I don't have celiac, I even wrote a post specifically about that on my blog, I do have a severe gluten allergy. I can relate to a lot of what you are saying. I also wrote a post about how it's frustrating because people simply don't understand. Good luck to you. Great post.

    ReplyDelete
  17. Wow— super eye opening as I can relate to many of the situations you have encountered (however, on the other side of the exchange)... Makes me think before judging any individual.

    ReplyDelete

Post a Comment

Popular Posts