To the People Who Think I'm "Exaggerating" My Celiac Disease or Dietary Needs

"She says she has celiac disease? How do you even know that's for real? I bet she just likes the attention."

"She's not gonna get sick from someone using the same freakin' kitchen utensils to make her food. Stop exaggerating."

"Her whooole life revolves around this so-called 'disease.' How is that healthy?"

I have celiac disease...and these are just a few of the things I've had said about me, and my chronic illness this year.

To the People Who Think I'm "Exaggerating" My Celiac Disease or Dietary Needs

Before these comments rose up, I thought I'd faced about every challenge I could related to living with celiac disease. I've been hospitalized for malnutrition when going gluten free initially wasn't enough to heal me from intestinal damage. I've survived college (and once I graduate this coming May, grad school as well) while cooking all of my own gluten free meals. I've created strong - romantic and otherwise - relationships. I've even learned how to eat gluten free for $35 a week or less.

But 2019 made it painfully obvious that I hadn't faced one obstacle that, unfortunately, is far more common than it should be: people being bullied or criticized because of their food allergies or celiac disease. 

I've read plenty of stories in gluten free support groups about families or friends who make rude remarks or believe that "a little wheat can't hurt." Two years ago, I even shared a horrific news article on my blog's Facebook page about how a teen with a dairy allergy died from bullies allegedly giving him cheese.

I can't say how others who have been bullied - or, at the very least, criticized for their dietary restrictions - reacted. I know that in my particular situation, I wasn't given the chance or in the proper mindset to respond to my own bout of critical comments as thoroughly and educationally as I would like. So, here's what I wish I had said instead:

I wish I had said that having an invisible illness doesn't make my illness any less real. 

All through college, I feel extremely fortunate that I was not bullied for my celiac disease (though I did receive my fair share of ignorant comments). I think that partly resulted, though, from the fact that I looked sick for a majority of my college experience. During the first semester of my freshman year, I was hospitalized for celiac complications, vitamin deficiencies and malnutrition, and my hallmates made a get-well poster to hang on my dorm room door. I was literally known around my small campus not only as the "gluten free girl," but also as the girl who was hospitalized freshman year.

To the People Who Think I'm "Exaggerating" My Celiac Disease or Dietary Needs

Nowadays, I'm still thin and I'm obviously still eating gluten free. However, I'm no longer wasting away, and with eating gluten free being a common fad nowadays, I can understand how people might be able to look at me and not believe that I'm sick.

But celiac disease is real and affects one percent of Americans. Invisible illnesses are real, and 96% of people who have an illness actually don't "show" it. And we shouldn't have to wear our medical diagnoses on our sleeves in order for our condition to be believed.

I wish I had explained more about how dangerous even a small amount of gluten exposure is for people with celiac disease.

Honestly, I could talk about the problem of cross-contact (or when gluten-free foods make contact with gluten-containing foods and are no longer safe for celiacs to eat; also often referred to as "cross contamination) for hoooours. Because here's the thing. Being gluten free is a whole lot easier nowadays than it used to be. Most "regular" (and by that, I mean non-health-food-only) grocery stores carry gluten free options, and tons of new gluten free products seem to be popping up every year. You can even find a gluten free menu or a few gluten free options at many chain restaurants.

However, not all "gluten free" food items are safe for people with celiac disease. According to a 2015 poll, 1 in 5 people in the US avoid or lower the amount of gluten in their diet, even though only one percent of Americans have celiac disease. And as it has become more "popular" to be gluten free (even without a medical reason to do so) more restaurants and products have been releasing options that are "gluten friendly," "gluten lite" or made with gluten free ingredients but in a gluten-filled environment that promotes a high degree of cross-contact. 

To the People Who Think I'm "Exaggerating" My Celiac Disease or Dietary Needs

Now to someone who knows nothing about celiac disease, I get how "high maintenance" or "exaggerated" it may sound to say that I can't eat the pumpkin pie filling out of the gluten-filled crust with no problems or eat with the same knife that was just used to cut into wheat bread. But it only takes 1/164th of an average slice of bread to create enough gluten to damage someone with celiac disease. So crumbs really can be dangerous when you're living with celiac disease. 

And I wish I had said that celiac disease isn't my whole life, but is inevitably a BIG part of it

How can it not be when celiac disease controls every single bite of food I put in my mouth, as well as where I can safely eat, what beauty products I feel comfortable using and even what my future children's lives could look like?

Because of my "public" online presence, I do talk about celiac disease more than perhaps the average person who lives with it...but I'm OK with people wrongly assuming I'm only my disease if sharing my story helps even just one person feel less alone or more optimistic about their recent celiac diagnosis.

To the People Who Think I'm "Exaggerating" My Celiac Disease or Dietary Needs

Right now, there is no "cure" for celiac disease except following a gluten free diet, and I will have celiac disease for the rest of my life. But as much as it does influence what I eat and my daily routine, celiac disease has also made me an even more determined, empathetic and adaptable person, and those are skills I will be happy to utilize for the rest of my (gluten free) life.

At the end of the day, I can't control what you - or anyone else - think of me or my diet.

However, if you've ever made comments like the ones listed at the beginning of my post, I hope this article will help you think of people's dietary restrictions in a different light. And if you've ever been the target of such comments, know you're not alone...and the three points I've mentioned might be a good starting place for how you respond in the future.



Have you ever been bullied or criticized for your chronic illness or dietary restrictions? How do you react? Tell me in the comments!

Comments

  1. Thank you for sharing this Casey. In my case CD destroyed my thryroid function and hurt my liver function before it was diagnosed. As a result, my body went into a mode where it was holding on to everything. Hence I didn't waste away, I ballooned. Fixing a thyroid issue is a minefield of misinformation too and there's literally nothing they do for liver unless you need it transplanted or have a virus they can cure. I ended up treating the liver with choline and by eating liver, and I had to go to a functional medicine doctor (MD) to fix my thyroid after even Armor thyroid didn't help. (The key was liothyronine, pure active T3).

    Even though this is genetic and frequently undiagnosed, some people assume I wouldn't have become ill if I had stayed thin. The fat shaming in the US is so strong they think that a disease that can disable your thyroid function could've been prevented by eating less and exercising more. As if I wasn't doing that already.

    I think when it comes to diet and exercise there's a lot of bullying in every direction. I quit vegan, was bullied. I quit keto and became Paleo, was bullied. Etc. If I make no effort to change my diet (which I did, to just become sane about it again), then it feels like I"m not doing enough.

    But the nature of the bullying is that some people have an inability to react with empathy to each other. They see an obese middle aged woman struggling to climb some stairs to a lighthouse, and instead of saying (like my grandmother) "poor dear, let me help." They instead become disgusted. And somehow "disgusting" is an OK word to describe people. I used to say in church, sarcastically, OK so it's not OK to hate someone, but it's OK to be disgusted by them? Because both of those things lack compassion.

    On a broader level, we could spend the next several years finding out about all the horrible things going on in the world because youtube has shown us the current events that were not important enough to get into the evening newscast. Our capacity for compassion is being stretched and some people's reaction to that is to look for things they don't have to be compassionate about. I've written about the toxicity in the internet, especially against gluten free, which seems to get tangled up in liberal politics somehow. I think some of the negativity is because people feel relief if they can convince themselves that this or that subject doesn't matter.

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    1. Thank you so much for being so open in sharing your own story, Angelica. There is SO much more to people's health than what meets the naked eye, and if more people were just more empathetic in general, I know there would be a lot less pain in the world.

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  2. This sounds just like everything that has happened to me in my life. Only in 1970 there was doctor that knew about Celiacs. Everything answer was just irratable bowl syndrome or wasting disease. Praise the Lord for the people who believe and understand around you.

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  3. Yes! All of this! Thank you for sharing your story. I relate so much to others perceiving me as high maintenance or needy due to my celiac disease. So often I will share my dietary needs in a public space (hanging out with people, party, event etc) and will be asked if I can just pick the gf part out of the gluten part, especially pulling breading off. Can be so hard to help people understand the seriousness of it.

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