Struggles Only Those With Gluten Intolerance (or Celiac Disease) Will Understand

I’ve been wanting to do this post for a while.. but brainstorming all the gluten free struggles I’ve went through in the past 8 years is hard! So, I decided to ask on several different gluten free support groups (including our own) what are some of the struggles others have encountered. I must say, there’s some doozies.

*The ones stated: “-member” were provided from an online support group. The ones without were my own.

When you’re reading a label that says “gluten free” but also states that it “may contain wheat…”
When you go to a restaurant and ask for a gluten free menu and they bring you the nutrition facts guide….

When you ask the restaurant if their fries are gluten free and they say yes but they’re made in the same fryer as everything else. So you then tell them they’re not gluten free and their response is…”the high heat cooks all the gluten out…” that’s not how it works, bud. *goes to a different restaurant
Having to take snacks everywhere…and I mean everywhere. All. The. Time.
Asking if there are any gluten free options/menus at a restaurant and being told “I’m not sure but we have lots of healthy options!” -member
“Traveling with no snacks and no restaurants that have gf, on the road you’re traveling on for hours.” – member
Having to go to 3 different grocery stores because one doesn’t carry everything.
Having to ask a million questions about cross contamination…
“Sitting in a restaurant and the next table over is having a gluten bashing conversation… all in your head… person with me just looks at me and says… let it go… they have not a clue … really no idea… walk in my shoes for just one mile…” -said from a support group member
“When going out to eat or grocery shopping and people talk about how I pay too much or how cheap their meal is and why do I choose to spend that much. Lol, like I have a choice.” -support group member
Having to pay $5 for a loaf of bread…or bagels… or cupcake… or cookie… you get the gist.
The amount of lunch bags you have…Really I have like half a dozen lunch bags.
Going to festivals where there’s food trucks….all the gluten… -member & me
Walking through the food courts in the mall. I literally get sick by just the smell of gluten. No joke.
When they put the gluten free bread in the regular bread aisle…
When you have to keep your bread in the freezer but then when you want it you can’t get a slice..because it’s FROZEN SOLID
When you find out gluten is in EVERYTHING! Makeup, skin care products, shampoo, conditioner, soaps, hand sanitizer, chalk, envelopes…
When a restaurant asks if your gluten free order is an allergy or a preference..1. gluten intolerance is not an allergy, it’s an intolerance. 2. what other “allergy” has to be asked that??
“My daughter has a cosmetology licence but can’t experiment with many products due to hydrolyzed wheat proteins.” – said from a support group member
When you’re a Dietetics major but you can’t try any of the foods you make in the food science labs.
Having a separate toaster.. and Tupperware…and wash rag/sponge because gluten gets trapped everywhere.
“Play groups, play places , and such and having an 18 month old diagnosed with celiac… cross contamination is everywhere and you can’t tell a toddler to “ wash their hands, don’t eat the toy, don’t put your hands in your mouth” etc … going out in public is a secret nightmare no one can relate to!” -A support group member who is a mom of a celiac child
Going to birthday parties after just starting the gluten free diet. Literally one week after…
Having the treatment for your disease be known as a FAD diet…
Business lunches! The worst. When I was a younger professional I would just go where ever the person suggested and not eat. Now that I have more confidence (and clout?) I pick the restaurant. But no matter who it is or what the meeting is about, we end up talking about my autoimmune disease for the first 10 minutes. -support group member
Having a hard time eating at friend or family houses because of cross contamination..then feeling bad that you’re sick because they really did try -member
Trying to find gluten free food in an airport- member
High school lunches…-member- but this was a struggle for me all through high school!
Hearing people say, “are you just choosing to be gluten free?” -member
When the waitress brings the bread and then goes, “oh sorry, you can’t have this…” -member & me
When the restaurant’s gluten free meal option is a burger without the bun or a salad…so many salads… -member & me
Dating or trying to explain celiac/gluten intolerance to your date- member (side note: lucky for me, Trenton is also gluten intolerant 😉
Being sad in the grocery store cause you see all the foods you can’t have ever again -member
When people say, “oh that really stinks, I’d die before I’d have to give up gluten…” I would die if I didn’t give up gluten so….
Having to bring your own food everywhere & then people ask why your food is “special” or different..

This post isn’t to have a “pity party” about being gluten intolerant, but to instead share with everyone what we go through- so the public can better understand Celiac Disease & eating gluten free. Keep spreading Celiac Disease awareness!

Have a gluten free struggle that needs added to the list? Comment below!

Ciara