7 Things People with Celiac Disease Mean When They Say, "No Thank You" to Food

When you have celiac disease, saying "No thank you" to offered food is a regular occurrence. Although celiac disease awareness is growing, though, many people don’t understand the various reasons why celiacs turn down so much offered food. As a result, celiacs like me can start feeling self-conscious or guilty about how many times we need to say, “Thank you, but I can’t eat that.”

7 Things People with Celiac Disease Mean When They Say, "No Thank You" to Food

Today, I’m rounding up seven things that people with celiac disease really mean when they say, “No thank you” to food. So whether you have celiac disease and want to be reminded that saying "no thank you" is often necessary to stay healthy or you know people with celiac disease (or other dietary restrictions/food allergies) and don't understand why they turn decline so many foods, keep reading to learn what people with celiac disease are trying to say with the three little words: “No thank you.”

1. The food contains gluten or wheat.

This one is pretty obvious, but still worth repeating. When you have celiac disease, even small repeated exposures to gluten can cause intestinal damage so “less gluten,” “light gluten, “low gluten” (or whatever other annoying buzzwords are being thrown around these days) are not an option. If a food has gluten or wheat, it’s a no-go for people with celiac disease!

2. The food contains oats, which some celiacs can't eat, even if the oats are gluten free.

Oats are a controversial topic in the celiac and gluten free community, and for good reason. Although oats are technically naturally gluten free, they are often cross contaminated. Even when oats are gluten free (or even made using purity protocol, the gold star of gluten free oats), they can be a problem for some celiacs, including me. When I have a large amount of gluten free oats, I end up feeling “glutened” and super tired for a week or so. As a result, some celiacs may also turn down gluten free foods that contain oats - and they’re doing it for their health, not to be finicky or picky eaters.

7 Things People with Celiac Disease Mean When They Say, "No Thank You" to Food

3. The food could have been cross contaminated when being cooked.

In my opinion, one of the biggest challenges of having celiac disease is avoiding cross contamination. Thanks to the influx of gluten free options in restaurants nowadays, eating out gluten free is much easier than it used to be. However, eating out gluten free and cross contamination free is a lot harder. Celiacs can get sick from foods cooked in the same fryer as wheat, gluten free pasta cooked in water from wheat pasta, etc. So if there’s the possibility that a food might have been cross contaminated (at a potluck, for instance), many celiacs will err on the safe side and say, “No thank you.”

4. The food is out of its packaging, we can't find the ingredients list and we don’t feel comfortable eating it. 

I love having people who care enough to accommodate my gluten free diet anyway they can. However, when people remove a “gluten free” product from its packaging to give it to me or cook/bake it, I sometimes don’t feel safe enough to accept it. Everyone with celiac disease needs to set their own boundaries and decide what level of educated risk they’re comfortable accepting. If we can’t see the actual ingredients of a gluten free product, know the name of that product to look it up online or know what other ingredients were added while it was cooked, though, many of us will probably smile and politely decline. (Especially if the person giving us the gluten free gift isn’t super familiar with the dietary restrictions required with celiac disease).

7 Things People with Celiac Disease Mean When They Say, "No Thank You" to Food

5. The food’s packaging says it’s made in a facility with wheat, and we aren’t sure about the company’s cross contamination protocol. 

Speaking of cross contamination, gluten free products made in a facility with wheat is another hot topic in the celiac community. It’s important to realize that processing facilities can be miles long and that "shared equipment" or "shared facility" statements are voluntary and not required by the FDA. It’s also important to know that you can look up information about the company’s cross-contamination protocol on their website and even personally reach out to them via phone, social media, etc to ask about possible cross contamination. At the end of the day, though, different celiacs have different levels of comfort with gluten free products made in a facility with wheat. Some people with celiac disease may eat that gluten free food...and others may turn it down.

6. The food contains some other ingredient - besides gluten - that doesn’t agree with us, like dairy, which many celiacs (at least initially) can’t tolerate in large amounts. 

At least in my experience, going gluten free for celiac disease helped me recognize other foods that bother my stomach. Plus, thanks to the damage gluten does to intestinal villi before a celiac diagnosis, many celiacs are initially lactose intolerant. So even if an ice cream flavor is certified gluten free, someone with celiac disease may decline trying it because they can’t tolerate some other ingredient (like dairy!) in the ice cream.

7 Things People with Celiac Disease Mean When They Say, "No Thank You" to Food

7. The food just isn’t something we want to eat! 

Does everyone who eats gluten love every single food filled with gluten that exists? No! And the same logic applies to people with celiac disease. There are tons of delicious gluten free products and foods out there nowadays (check out this list of my favorite gluten free companies if you need a guide!). But there are also some not-so-tasty gluten free products, and everyone’s taste buds and dietary preferences are different - including celiacs’. So even if a food is celiac safe, that doesn’t mean everyone with celiac will want to eat it! 

What I Hope People Know About Celiacs Turning Down Food

The biggest thing I hope that people realize about celiacs turning down food? That we aren't doing it because we're "picky" or "high maintenance." At least for now, eating a strict gluten free diet is the only treatment for celiac disease...so we really can't "just have a little" or "stop worrying so much." And sometimes, even "gluten free" food isn't celiac safe or something we actually want to eat.

7 Things People with Celiac Disease Mean When They Say, "No Thank You" to Food

So when we do say, "No thank you" to offered food, know that we're doing it for our own wellbeing...not to offend anyone else or make others' lives difficult. And if you understand this fact and continually offer nonjudgmental support of our dietary needs? Well, that is a gift that we will never turn down.



Do you ever find yourself feeling guilty for turning down offered food? What advice would you give to someone who does? Tell me in the comments!

Comments

  1. Thank you, Casey, this is great! I would say to a person who felt guilty that it was natural to want to maintain social warmth, but the best warmth and caring comes from people who understand your needs and love you all the more for being who you are. Although people are people, we are still unique and the closer you look at anyone the more detail you see. Whether that detail is gluten free dieting or a passion for Go Karts, loved ones can only love you back if they know you. Self expression ensures people don't end up loving a false image of you, and includes the risk that they'll turn away instead. I'd tell that person to be brave, the phrase 'be yourself' isn't a platitude.

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    1. I love how you phrase that! It's definitely more important for people to know and care about the full you, and they can't do that unless you explain your dietary needs. Thanks for sharing your thoughts!

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