This article details 21 struggles only gluten-free people will understand. If you eat gluten free, I think you’ll be nodding your head in agreement as you read along and find so many of these “struggles” apply to your life, too. This post contains affiliate links. Please see my disclosures.
I’ve been eating gluten free for eight years. It’s been so long that I can hardly remember what life was like before celiac disease.
While eating gluten free has become easier for me, it’s still never easy. My struggles, and your struggles, are real.
When you eat gluten free – and when you’re serious about eating gluten free – you need to avoid any and all gluten. You cannot follow a low-gluten diet, nor cheat on your gluten-free diet here and there.
Even just a crumb of gluten can set off an autoimmune attack in people with celiac disease, and can create chronic inflammation in those with gluten sensitivity. It’s no secret that chronic inflammation leads to disease.
There is an emotional burden to the gluten-free diet that people who do not have to eat this way don’t understand. You feel isolated, sad, anxious, and left out of the fun.
This article takes a lighter approach to the plight of the gluten-free eater.
Most of us have to continue justify the way we eat, yet we continued to be dismissed or made fun of as we live in a world void of sympathy for the plight of the gluten-free eater.
Today I’d like to share with you 21 struggles only gluten-free people (you and me!) will truly understand.
Do you relate to any or all of these struggles? Please share in the comments below. (Editor’s Note: This post has garnered more than 100 comments!).
(1) Paying More for Less Food
Have you ever noticed that pizza joints offer gluten-free pizza, but they give you a smaller pizza pie and charge you $2+ extra just because it’s gluten-free? “I like paying more for less food,” said no gluten-free person EVER!
(2) I’m Not Trying to be Difficult, But…
If a salad comes with croutons mistakenly placed on it, I have to send it back. Not even a crumb of gluten can touch the plate and, no, I can’t just pick off the croutons.
The same goes for burgers – I cannot remove the bun and eat it because even a tiny bit of gluten causes an autoimmune reaction in my body. No thanks!
I’m not trying to be difficult when I send my food back and request one made sans croutons or bun, but I sure do sound like a diva!
I’m also not trying to be difficult when I order a gluten-free meal and ask a million questions. I’m only trying to eat in a way that is good for me. A little understanding and accommodation goes a long way in helping me do that (and feel normal in the process).
(3) Um, Rice is Actually Gluten Free
Eating out when you’re gluten free is full of fraught and frustration. (You can read my best tips for eating out gluten free here.) Many servers have told me I can’t eat something because it has rice in it, however, they don’t know that rice is gluten free.
Few people truly understand what is and isn’t gluten free. Everytime we eat out, we have to take precious time explaining and educating the staff on what we can and can’t eat. It’s exhausting.
(4) I Have a Dozen Different Flours in My Pantry
Baking used to be so easy. I used to have just one flour (all-purpose wheat flour) in my pantry… but now, as someone who bakes exclusively gluten free, I need and use a lot of different flours just to create the same cookies and breads as I used to do so easily before celiac.
I even have a container of xanthan gum in my freezer too – lol!
Only gluten-free people understand the need to have a variety of different flours, starches and gums, all which are needed to get a recipe to taste just right and mimic the taste and texture of baked goods made with wheat flour.
(5) Wait, There’s No Food For Me?
All gluten-free folk have been in this exact situation. We’re at a wedding, special event, work conference, etc., and yep, there’s plenty of food for everyone else, but no gluten-free food for us (even if we requested it ahead of time). Ug!
This is a total bummer and an all-around uncomfortable situation for everyone.
Not only did the host not consider me, but now the people at my table feel uncomfortable eating in front of me. Plus, I’m stuck eating that emergency granola bar I keep in my purse for times like this instead of eating a beautiful, warm meal – ho hum.
When I traveled to Israel, I thought I had done everything right to ensure my tour operator would provide gluten-free meals for me. I contacted them ahead of time and spoke with several people to ensure I would be able to eat during my 10-day all-inclusive trip where I knew I’d be at the whim of a tour operator.
What I found when I got to my destination was a whole other story. No food for me. I was hungry, frustrated and emotional as a result.
Gluten eaters just don’t understand the emotional toll the gluten-free diet takes on us, especially in high-stress, out-of-the-normal type situations. These are times when I can’t eat at home nor can I survive on granola bars. The struggle is real.
(6) It’s Good Even Though It’s Gluten-Free
My cooking and baking gets judged by gluten onlookers often. “It’s not that bad,” I’ll hear, or “I could eat this if I had to.” Geez, thanks for your (gulp!) compliment.
(7) Where’s the Bread?
If you find a decent gluten-free bread, I’d really like to know about it, please.
Update: I do enjoy a few brands of gluten-free bread – like Canyon Bakehouse and Outside the Breadbox (Colorado only), but bread is not the same as it once was. I find toasting gluten-free bread makes a world of difference in taste. Cold bread, forget it. It’s not worth the calories.
(8) Eating at a Friend’s House
While it’s nice to get invited to someone’s house for dinner, for those of us on a gluten-free diet, eating at someone’s house is a big source of anxiety and a lot of work.
There’s a lot of explaining and planning that goes into these rare occasions. Plus, I often find myself spending the day cooking in order to bring a few safe dishes to my friend’s house. I rarely get to sit back and simply be hosted.
If you’re going to host someone who eats gluten free, please read my article about how to safely host your gluten-free friend for dinner.
(9) There’s Never a Break From Gluten Free
While people on a variety of diets will allow themselves “cheat” days, or they don’t fret if they ate something outside of their diet parameters, there’s never a break from eating gluten free for those of us with celiac disease or gluten sensitivities. We can’t eat just a little gluten and be okay. Ever. We constantly have to think about what we can and can’t eat.
For example, when someone offers me a piece of gum, I can’t take it without reading the label first. When I’m offered peanuts on an airplane, I must first read the label to make sure the manufacturer didn’t add gluten to the mix.
Furthermore, when I go to a wedding, restaurant or conference, there’s no break from having to discuss my diet with many people to ensure I get to eat alongside everyone else.
There’s never a break from the gluten-free diet. Period.
(10) No Dedicated Fryer?
I love French fries, so when I go out to eat and the restaurant does not have a dedicated fryer, I can’t help but feel a little bummed. OK, I know this struggle sounds silly, but I love French fries and it’s my reality.
I want restaurants to know that their gluten-free customers like French fries too but we can’t eat ’em if they’re cooked in a shared fryer that contains the same oil used to cook foods containing gluten (like chicken nuggets). I wish restaurants would keep their naturally gluten-free French fries gluten free.
Please note there are restaurants with dedicated gluten-free fryers including Red Robin, Five Guys, and Chick-fil-a (always inquire within to double check). When I get a hankering for some French fries, I make sure to visit these restaurants ASAP.
(11) Planning Your Day Around Grocery Shopping
Until you’ve been gluten free for a few years, grocery shopping is such a chore. There’s no such thing as doing a quick shopping trip. When you’re at the grocery store, you’re at the grocery store for a while.
(One tool that makes grocery shopping easier is the Fig Food Scanner & Discovery app.)
On top of that, you’ll find that one grocery store has the exact gluten-free bread you like, but the other grocery store carries the gluten-free pasta you want. It’s exhausting to have to shop at multiple places just to piece together a decent meal.
(12) “Gluten-Free Friendly” and “Gluten-Conscious” Menus
I hate “gluten-free friendly” and “gluten-conscious” menus. Blech. Restaurants use these confusing terms to get out of offering safe gluten-free meals for those who need it most. Hello Panera?
To me, these restaurants are just trying to cash in on the gluten-free “fad” without providing a safe meal for those of us who need it most. Shame on you.
Please, restaurants, just tell me if my food can be prepared gluten free or not. Please don’t give me the runaround. I just want to eat something safe and feel normal, okay?
(13) Domino’s, Papa Murphy’s and Papa John’s
These pizza joints offer gluten-free pizza that isn’t really gluten free. Domino’s, Papa Murphy’s and Papa John’s offer a gluten-free crust, yet they take no precautions to prepare a pizza in a way that is truly safe for someone with celiac disease or gluten sensitivity.
In fact, Papa John’s says on its website that people with celiac disease should not eat its pizza. Huh? Isn’t this just admitting that you’re just cashing in on the gluten-free trend without care for those of us who need to eat gluten free for medical and/or health reasons?
Quit teasing me with food I can’t actually eat. You suck. Yep, I said that.
(14) Why Did You Put Gluten in Rice Krispies?
If you make a product with rice as the main ingredient, it should be a law that it must be gluten free. Please, please, please leave all rice products alone. Don’t ruin rice!
Honestly, it’s so darn confusing when manufacturers like Kellogg’s add things like barley malt to Rice Krispies, a product that should be a naturally gluten free but isn’t. At least we have gluten-free crisped rice alternatives.
(15) Stop Calling My Diet a Fad Diet!
Eating gluten free is no fad diet for me nor the millions of people who have celiac disease or who suffer from gluten sensitivity. Quit calling it a fad and thinking it’s okay to dismiss us – just stop.
Gluten free is no fad diet and if you still think that, you’re just a big old ignorant bully. Read a book.
(16) Having to Always Bring Food
It’s such a drag to have to bring along my own food on trips and to events. I do it because I never know if there will be safe food for me, even if I’m assured there will be. I’ve been let down too many times to count.
On top of that, there are only so many non-perishable foods you can pack – and quite frankly, stand to eat – for a two-week trip. At some point you need a warm meal.
We always need to be prepared. Period.
(17) You Only “Think” It’s Gluten Free?
I was at an event where I requested a gluten-free meal three times ahead of the date, and yet the plate of food placed in front of me came with this caveat, “I think it’s gluten-free. I did my best.”
Wait, you only think it’s gluten-free? You mean you don’t know for sure?
Come on, people. I need a little more assurance than that. I don’t put food in front of my guests and say, “I think it’s edible,” or “I don’t remember if I put arsenic in it, eat up!” Please don’t just think it’s gluten free, know it is. Thank you.
Also, while I’m on the topic, it’s always nice when my food is wrapped or contains a toothpick that says, “gluten free” or “allergy.” This way I have some peace of mind knowing that this is the gluten-free meal or dish I ordered. It’s easy to confuse meals in a busy kitchen.
(18) Sad Desserts
I appreciate people trying to accommodate me with an entire gluten-free meal, but sad desserts (like rice pudding and vanilla almond cake) make me sad, especially when everyone else is enjoying molten lava cake or fudge brownies doused in raspberry sauce. I’d love a piece of chocolate cake, too.
(19) Feeling Alone, Uncomfortable and Isolated
It’s easy to feel sorry for yourself when you’re the only one that eats gluten free. It can feel lonely when you’re the only one looking for a special accommodation and everyone else is already moving on to dessert.
This happened to me during a recent trip. Everyone in my group was enjoying appetizers, breads, noodle salads, stews and breaded chicken while I waited (and waited) for that special gluten-free meal promised to me. After a long wait and after feeling so alone (and hungry) while everyone indulged in beautiful foods, a sad piece of chicken on top of bean sprouts was placed before me. It made me cry.
I hate sitting there like a sad lump while everyone is indulging in delicious foods. It makes me uncomfortable, and it makes the people at my table uncomfortable too.
I recently attended a special event where I requested a gluten-free meal (if possible). The caterer assured me it was possible and a meal would be provided. Great! A ton of courses of food came out of the kitchen for everyone else… but still nothing for me. The others at my table didn’t know if they should eat or wait for me. It was uncomfortable to say the least!
Before I could even tell everyone to go ahead and eat without me, one woman at my table said, “I like gluten so I’m going to go ahead and eat.” Her comment made me feel awesome – not! It’s no fun watching others eat while you just sit there. No thanks.
(20) Fake Gluten-Free Eaters
When well-meaning friends tell me they eat gluten free too, I of course think they’re serious about it. I even go out of my way to bring them gluten-free goodies and support them however I can.
But then I get so confused when I see them eating a bite of gluten, or talking about how they still eat gluten from time to time.
Obviously they can do whatever they want… but what they don’t realize is that their wishy-washy actions affect me. They are making me look like a fool. I hear things like this all the time: “My friend Heather eats a little gluten from time to time and is okay. How come you’re not?”
How am I going to get servers, caterers, friends and family to take my diet serious when other so-called “gluten-free eaters” are okay eating gluten? I don’t get it.
(21) Ill-Informed Doctors and Advice
My whole life I thought my doctor knew everything… but I now realize I have been sorely mistaken. Doctors do not know everything, especially when it comes to celiac disease, gluten sensitivities and nutrition. In fact, doctors have received very little nutrition training. The bulk of their training is in pharmaceuticals. There is so much about gluten-free living that doctors know little to nothing about.
One doctor made my blood boil. He told my friend that eating strictly gluten free would give her diabetes (gulp!). This is not true – and actually – quite the opposite is a more likely scenario.
Another doctor tried to scare me by sharing this awful, inaccurate study that tried to prove eating gluten-free would result in heart disease. It doesn’t.
The struggle to find a doctor who “gets it” is hard. I suggest working with a functional medicine doctor or finding a doctor who has studied gluten disorders and nutrition in earnest. Stop placing blind faith in all doctors. Many of them don’t get it and still believe the gluten-free diet is just a fad (and they’re the ones still recommending low-fat, grain-heavy diets to their patients).
Please note there are great doctors out there who get it. You just need to find them.
Am I Speaking Your Language?
I have a feeling, if you eat gluten free like me, that you have faced many (or all) of these struggles.
The struggle is real.
I’m curious, which one of these struggles resonates with you the most? Are there other struggles you face as a gluten-free eater that I did not include on this list? If so, please leave a comment to share (and read the 100+ comments below to see what others have said).