15 Things You've Definitely Said If You Have Celiac Disease

When you have celiac disease and don’t live near other gluten free eaters or fellow celiacs, it can be easy to feel alone or different. That’s one of the many reasons - along with raising celiac awareness and showing the nuanced ways celiac disease actually changes our lives - I love sharing these list posts of things that most (if not all) people with celiac disease experience.

15 Things You've Definitely Said If You Have Celiac Disease

Today, we’re talkin’ the talk and talking all about some common sayings and questions that come up when you have celiac disease! So whether you have celiac disease and want to feel like you aren’t alone or want to know more about what living with celiac disease is really like, keep reading to discover 15 things you’ve definitely said or asked if you have celiac disease!

1. "Actually, celiac disease isn't an allergy..."

People often confuse celiac disease with a food allergy, but celiac disease is actually an autoimmune disease. I’ll be honest in saying that I don’t spend time explaining this difference to everyone who confuses celiac disease with an allergy, but I think it is important to recognize the difference and educate others when you can.

2. *Moans* "This. Is. The. Best. (Gluten Free) Pizza. I've. Evvver. Tasted."

People often mistakenly assume that eating gluten free means you’re eating bland, gross or boring foods. But gluten free foods can actually be pretty dang delicious - and when we find something that tastes amazing, we’re definitely going to say so!

15 Things You've Definitely Said If You Have Celiac Disease

And if you have celiac disease and haven’t found a gluten free pizza, pasta, cake, etc. brand or recipe that makes you moan...know that they are out there. And you will be able to say this one day!

3. "No, vegetarian or vegan isn't the same thing as gluten free."

I can’t even count how many times I’ve gone into a restaurant, asked about their gluten free options, and been told that they can “easily make any order without meat or dairy.”

Luckily, restaurants are getting better at providing gluten free options and there are some amazing places you can easily eat out gluten free. But if you find yourself rolling your eyes and saying this line waaaaay too often, you aren’t alone!

4. "Sometimes, I'd just reallly like to be able to eat a piece of bread."

As my long-time readers know, I try to focus on how awesome living with celiac disease can be. But some days, a girl just really wants to be able to stop by any restaurant and dig into a fluffy, gluten-filled pizza, hamburger or warm rolls with butter.

15 Things You've Definitely Said If You Have Celiac Disease
(Source)
And if you’ve been recently diagnosed with celiac disease, you’ll probably be making this comment pretty often about a variety of foods you miss. But the longer you’re gluten free, the more you heal on the gluten free diet, and the more delicious gluten free options you find, the easier it will be to focus on what you can eat.

5. "Am I bloated because I was glutened? Or just because...?"

For me, one of the hardest parts about celiac disease is how much “glutened” symptoms can vary between people or even gluten exposures. Some celiacs have extreme symptoms like vomiting, diarrhea, etc. Meanwhile, I usually just experience major fatigue and brain fog, and I learned at the Gluten Free Teen Summit that many celiacs don’t have any noticeable symptoms after being exposed to gluten.

As a result, you can sometimes find yourself doubting if you’ve actually been glutened. Especially if, like with me, it took a loooong time for your gut to heal on a gluten free diet and eating gluten free wasn’t enough.

6. "It's actually not a lifestyle choice. I have to eat gluten free."

Pros of the gluten free fad diet: it helped encourage the production of more yummy gluten free products.

15 Things You've Definitely Said If You Have Celiac Disease

Cons of the gluten free fad diet: many gluten free options (especially in restaurants) are not actually celiac-safe...and it can be frustrating to constantly have to distinguish yourself from people who cut out wheat to lose weight.

7. "You won't believe the new product that just came out!!"

Maybe not everyone with celiac disease is a foodie...but I think we can all appreciate when a new, amazing gluten free goodie hits stores!

8. "Thanks for the offer, but I brought my own food."

Raise your hand if you’re the Tupperware girl or guy in your friend group! When you have celiac disease, taking your own food to dinner parties, college club meetings or any other social event is a regular occurrence. And while it’s awesome when friends or family try to accommodate our dietary needs and make sure we can safely eat along with everyone else, sometimes it’s easier to just bring our own gluten free food to enjoy!

15 Things You've Definitely Said If You Have Celiac Disease

9. "You have celiac too?!?"

Sure, everyone with celiac disease is different and not all of us will get along. But it’s still pretty cool when you find someone who knows first-hand what life with celiac disease is really like.

10. "No, I can't just pick the toppings off the pizza crust or bread."

I’m just going to write *insert facepalm emoji here* and leave it at that...

11. "Gluten intolerance and celiac actually aren't the same thing..."

Just like celiac disease isn’t an allergy, it’s not the same thing as gluten intolerance. I’ve written before about the controversial nature of gluten intolerance (some think it’s not real...and there are some studies that support that claim). But regardless of what someone thinks about gluten intolerance, it’s definitely not the same thing as celiac disease!

15 Things You've Definitely Said If You Have Celiac Disease

12. "Gluten free cookies that everyone says are ammmmazing? That aren't crazy expensive? Score!" *does happy dance in the grocery aisle*

Nowadays, I can get my weekly groceries for $35 or less, but eating gluten free can definitely be expensive, especially when you’re just starting out. So when we do find some epic gluten free product that is freakin’ delicious AND on sale or not crazy pricey, dance parties in the grocery store aisle are a real possibility.

13. "No, I won't ever 'grow out of it.'"

People are usually well-meaning when they offer suggestions on how we can “cure” our celiac disease or try to comfort us by saying we'll maybe “grow out of it”...but celiac disease is a lifelong condition, and the only treatment nowadays is a strict gluten free diet.

It can feel suuuuper frustrating if you have to keep reminding people of these facts, over and over. But I'd encourage you try to focus on the positives: you may not grow out of celiac disease, but you can live a long, healthy life thanks to the gluten free diet!

15 Things You've Definitely Said If You Have Celiac Disease
From my girl, Margaret!

14. "Yes, potatoes are gluten free."

Sometimes, I honestly think I’d save myself a lot of talking if I had a business card that said something like: “I have celiac disease and need to eat gluten free. Yes, rice and potatoes are gluten free.” And I’m guessing most people with celiac disease can relate!

15. "Celiac disease can be freakin' hard...but I feel so much healthier now."

Like I’ve shared in previous posts, a celiac disease diagnosis changes waaaay more than just your diet. It changes how often and where you eat out, how spontaneous you can be, how you spend time with loved ones or significant others and much more. And sometimes all these changes are, well, freakin' hard.

But if the five years I’ve lived with celiac disease have taught me anything, it’s that being able to treat your chronic illness through your diet is a HUGE blessing. True, it took me a while to start feeling better on a gluten free diet. However, I can now (mostly) control my health with how I eat. And that’s pretty cool.

15 Things You've Definitely Said If You Have Celiac Disease

Whether you have celiac disease or not, I hope this list taught you something new or reminded you that you’re not the only one who gets suppper excited about a new gluten free product or deals with ignorant comments about the gluten free diet on a regular basis.

And if there’s something you say allll the time because of celiac disease that I didn’t mention, tell me all about it in the comments! I’d love to hear!

Comments

  1. Thanks for sharing your experiences and advice. Sounds like you've been through quite a journey!

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  2. i've never had celiac thankfully but sounds tough to have to limitations you do. great list of quotes. i like the happy dance you mention in the grocery store about cookies :D

    Joy at http://www.thejoyousliving.com

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  3. Great article thanks! I used to wonder why vegan/vegetarian was even a thing in the GF community. Eventually it dawned on me: There's an advocacy alliance between food allergy groups and Celiac disease groups. Also, many people with Celiac have a problem eating dairy as well, and it's not always just lactose. For me, it's casein, although it's a matter of irritant load.

    For example, I recently dealt with a mold problem in my house. As soon as the mold levels were low, I could cautiously eat casein again. And I've been tested for milk allergy, there isn't any (of the IgE type). Yet if I am exposed to an allergenic or toxic thing like Stachybotrys mold, I develop an inability to tolerate casein! So the connection and alliance between the two communities is real and helpful. I keep as much variety in my diet as possible but it can be hard. I keep telling myself everyone is different and that's all part of the tapestry of life.

    I hope you're doing well, Casey! Everyone is weird somehow when you get close enough, nobody's perfect or problems-free. And all these unique challenges just help weed out the people who are too brittle to care deeply. Every day I give thanks that my husband is a deeply caring person who makes sure I remember my thyroid pill in the morning, and so many other things I may flake out about. Loving people do exist. They're just hiding because they get called "sappy." But a tree without sap is dead inside.

    I used to get annoyed when people questioned my diet and then I thought, wouldn't it be worse if they just said nothing and ignored me? Ignorant is better than ignoring. Ignorant and inquisitive is an act of caring, usually. Unless you're on reddit, then it 's just a trap! ;)

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    Replies
    1. That is a very interesting observation about the GF and vegan/vegetarian community. And I'm doing pretty well. I'm crazy busy with grad school and teaching and part-time jobs, but such is the life of a 20-something! I so appreciate you reading and commenting regularly, even if it takes me ages to comment back. And it definitely sounds like your husband is a great guy. And I LOVE the phrase "Ignorant and inquisitive is an act of caring, usually." <3 That's something I'm trying to believe more often!

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