13 "Harmless" Comments That Actually Hurt People With Celiac Disease

Living with celiac disease can be hard. Hearing people make "harmless" comments about celiac disease or the gluten free diet - "harmless" comments that actually hurt people with celiac disease, like yourself or your loved ones - can be even harder. 

That’s why, after I read this great post about 19 seemingly harmless comments that actually hurt people with fibromyalgia, I knew I wanted to write a similar post about celiac disease. I have two goals with this post. First, I hope that, if you have celiac disease and are struggling with family members or friends who don’t understand and make (accidentally) hurtful comments like these, reading this post will make you feel less alone. (After all, all 13 of these comments are based on things I've actually be told or have heard about from others with celiac disease!) Second, I hope this post raises awareness of just how hurtful these kind of comments can be for people with celiac disease - and that these comments stop being said!

13 "Harmless" Comments That Actually Hurt People With Celiac Disease

Whether you have celiac disease, know someone who does or just want to be more aware of this complex chronic illness, keep reading to discover 13 comments that drive people with celiac disease a little crazy. 

1. "My aunt, uncle, best friend, wedding caterer (or any other random friend or family relation) had celiac disease years ago and they can eat gluten now."

Two points: first, celiac disease is a chronic illness and cannot be outgrown (unlike, for instance, food allergies) and there is no "cure" except for a strict, gluten free diet. Second? I am not your uncle, best friend, wedding caterer, etc. and his or her medical history likely does not have any direct correlation to mine. I appreciate you caring about me enough to try to keep me informed about others' alleged "cures" from celiac disease, but supporting my need for a gluten free diet would be even more helpful. 

2. "Gluten free food is so gross."

True, gluten free food will rarely (if ever) taste like its "normal", wheat-filled counterparts. However, we're lucky enough to live at a time where there are plenty of delicious gluten free brands to enjoy, ranging from fluffy gluten free bread to crunchy pretzels and granola bars. Not only that, but people with celiac disease don't have a choice about eating gluten free...so, please, don't make our diet sound like an unavoidable death sentence to our taste buds.

13 "Harmless" Comments That Actually Hurt People With Celiac Disease

3. “No wonder you’re so skinny.” OR “I thought everyone with celiac disease or who eat gluten free was skinny.” 

As I’ve mentioned before, people often assume that everyone with celiac disease is skinny. Similarly, people often equate the gluten free diet with a weight loss diet. Both assumptions are incorrect - and, either way, commenting on someone's weight is rarely a good idea.

4. “Why do you have to be so picky about your food?” 

I get it; sometimes, it's annoying when people have dietary limitations, especially if you're trying to organize a family get-together or a restaurant outing for a large group. However, celiac disease isn't a choice and neither is our strict gluten free diet, so please don't imply (even unintentionally) that it is. 

5. “I went gluten free for three weeks, so I totally understand how hard it is.”

Recognizing how hard it can be for people to live with celiac disease? Awesome. Trying to empathize with a celiac's daily struggles? Always appreciated! It's also important to realize, though, that going on a short-term gluten free diet is very different than having to eat a strict gluten free diet free of cross contamination for the rest of your life, and to avoid blanketly equating those two experiences.

13 "Harmless" Comments That Actually Hurt People With Celiac Disease
On the other hand, painting the gluten free diet as some nearly-impossible challenge isn’t overly helpful either. Yes, eating a gluten free diet (for celiac disease, gluten intolerance or any other medical condition) can be challenging. However, there are hundreds of thousands of gluten free people who constantly prove just how possible - and delicious - eating gluten free can be. 

7. “So are you going to force your husband/wife go gluten free too?” 

If this comment is originating from a genuine interest in my love life, that’s one thing. More often, though, comments like this make it sound like being married to someone with celiac disease would be horrible because we force people to ditch bread.

13 "Harmless" Comments That Actually Hurt People With Celiac Disease

If someone cares about me enough to go gluten free or even just eat gluten outside the house, that’s awesome. Do I try to convert every gluten-eater I meet (whether I’m dating them or not)? No. Personally, I don't think that a gluten free diet is the best diet for everyone (especially if they don't have gluten intolerance, a sensitivity to fodmaps or, obviously, celiac disease). As for dating people who eat gluten, well, my dates either need to eat gluten free or get very used to brushing their teeth every time they want to kiss me...and no one has complained of those options so far!

As the old saying goes, "Those who care don't matter, and those who matter don't care." I think the latter is definitely true when it comes to loving someone with celiac disease or another chronic illness. 

8. “Don’t you miss *insert any gluten-filled food, ranging from Papa John’s pizza to donuts*?” 

After over four years of living gluten free, I can honestly say that I've found replacements for most of my favorite pre-celiac comfort foods. However, there are definitely days when I'd love to just pick up the phone, order takeout from anywhere that sounds tasty and not have to worry about any of the ingredients in, or cooking process of, my dinner.

13 "Harmless" Comments That Actually Hurt People With Celiac Disease

So, yes, I do miss those foods...but, most days, I choose to focus on everything I can eat instead. As a result, I'd encourage people to instead ask, "What's your favorite gluten free food?" or "What's your favorite gluten free recipe?"

9. “Mary worked really hard on this cake/dinner/other gluten-filled food. It’s rude if you don’t even try it.”

Turning down all gluten-containing (or questionable gluten free) foods may not help us win Miss Congeniality, but health always comes before politeness. If people with celiac disease could eat “just a little” gluten without experiencing major brain fog, digestive distress, intestinal damage and other symptoms, many of us probably would. But celiac disease doesn’t work like that, so we don’t either. 

10. “But you used to be able to eat everything just fine!”

Celiac disease is unique in that someone can be born with the gene, never have it activated and therefore never have a problem eating gluten. However, once the celiac gene has been turned on (and scientists are still researching possible triggers), the only treatment is a strict gluten free diet. The fact that someone used to be able to eat gluten doesn’t make his or her medical need to eat gluten free from now on any less valid.

13 "Harmless" Comments That Actually Hurt People With Celiac Disease

11. “That [symptom] doesn’t sound like celiac disease to me.” 

Although people often assume that everyone with celiac disease experiences digestive-related symptoms, symptoms of celiac disease can range from rashes to anxiety or ADHD to unexplained anemia. Some people even have silent celiac disease, meaning that they don’t experience any negative symptoms from eating gluten but damage is still done to their intestines. No matter what symptoms caused someone to be diagnosed with celiac disease, they still have it...and they still need s gluten free diet. 

12. “My cousin has celiac disease and she can eat *insert food here* just fine.”

Because everyone with celiac disease is different, all of our gluten free diets are different to some extent. Some celiacs feel best eating a paleo diet while other celiacs go vegan. Not to mention that different celiacs might be more or less comfortable with different kinds of “gluten free” food. For instance, some celiacs might only feel comfortable eating certified gluten free foods while others will eat most products without gluten or wheat in the ingredients. Just like people who eat gluten don’t love every single gluten-filled food, someone with celiac probably also doesn’t love every gluten free food on the market. 

13 "Harmless" Comments That Actually Hurt People With Celiac Disease

Bottom line? Just because a food is gluten free or is eaten some other person with celiac disease doesn’t mean we will eat it...or want to eat it!

13. “But you look normal.”

Just like fibromyalgia, celiac disease is an invisible illness and you can’t automatically pick someone with celiac disease out in a crowd. “Invisible,” however, doesn’t mean “fake” or “less important.” As I shared in a previous blog post, there are also many ways that you can "see" our celiac disease, from the questions we ask restaurant chefs to the five million gluten free snacks always hiding in our bags.

So what can you do if you have celiac disease (or know someone who does) and you hear these kind of statements? First of all, don't take these comments personally. They can be said with misguided love, like when relatives try to explain how their neighbor found a "cure" for celiac disease. They can also simply originate from incorrect societal assumptions or stereotypes, like the celiac disease myths I explained a few weeks ago. Secondly, if you do feel comfortable responding to the comment, try to focus on educating the speaker.

13 "Harmless" Comments That Actually Hurt People With Celiac Disease

After all, as much progress as celiac disease awareness has made in recent years, there is still room for improvement...and speaking up when "harmless" comments like occur - and/or avoiding making these comments yourself - is another important step in the right direction.




What "harmless" comments about celiac disease, gluten free food or chronic illness drive you a little crazy? How do you respond to these kind of statements? Tell me in the comments!

Comments

  1. This is excellent. It really made me think. I went through my "skinny" phase very early and the diagnosis wasn't made. I have 23andme telling me my weight should be normal. But by now, the thyroid damage is the main driving force of all the other illnesses in the constellation of Celiac-related disorders. I think my body was on the way to manifesting diabetes by the time I figured it out. I'm glad to have stopped that process, I feel worlds better, but it also annoys me when people make the accusation that I can't be Celiac if I am obese (doctors have claimed that for not just Celiac but also Diabetes). I don't think that's accurate for middle aged adults who react to gluten.

    The "your food is gross" is probably the one that irritates me the most. I've decided I like sauces thickened by GF flours or starches much more than I ever liked roux made with white wheat flour. I think that's an improvement in flavor. Pancakes are much more delicious without wheat in them. I struggled to find relief by going vegetarian and vegan for a long while with limited results, so I appreciate many unusual foods. I guess it helps I'm not picky. But I do consider myself a foodie and I'd be depressed if my food was substandard. I think all diets have superb choices in them and when some food is missing, I just take it as an opportunity to make it better.

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    1. The "gluten free food is gross" stereotype is definitely something that needs to go away - the sooner the better!

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  2. I do really miss ordering takeout easily. Some days, man. And my partner is not gluten-free, we share a kitchen, and we just confine gluten to one cabinet/counter space. Maybe it would be different if he was a "bread with every single meal" kind of person, but mostly it's just breakfast cereal.

    I used to get a lot of "Oh, you're so HEALTHY bringing your lunch every day" comments at a former job, but I've been doing that my whole work life. It's actually mostly that I'm cheap, but that's worked out well with food allergies.

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    1. I bring my own lunch to work and school for the same reasons!

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  3. THIS!!!! Thank you again for such a wonderful post. So many of my pet peeves are on this list but I think #5 bothers me the most!

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  4. "Mary worked really hard on this cake/dinner/other gluten-filled food. It’s rude if you don’t even try it" is the worst! I've eaten a little of many things that are distasteful to me in the interests of being polite, but I would never eat anything that was harmful to me! To suggest that anyone do that is the height of rudeness, and I wouldn't hesitate to say so to anyone foolish enough to say that to me. In fact, in any dining situation it is rude to make any comment about what or how anyone is eating!

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  5. This is a well written post - and truly hit some of the main ones that really irritate the F out of me - but there's one I'd like to add "omg i'm doing whole 30 or i'm paleo so i totally get it now" or "i decided to go GF and feel so much better" without any doctor advice...

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  6. Mine is that everyone at work must bring a treat to share for their birthday , but I can have only had one person go out of her way to make me something gf. I get the comment that it tastes gross.

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  7. Just came across your blog, and it's incredibly informative and inspiring for Celiac disease. Thanks for sharing all of this.

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    Replies
    1. Thank YOU for the kind comment. It's comments like these that make all the work worth it <3

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  8. Protein-rich snack will help curb your hunger.
    If you like gluten free snacks the you can order gluten free snacks online at budget price

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  9. Thanks for sharing the information regarding the disease it spreads great awareness across the world.

    ReplyDelete

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