This article details 21 struggles only gluten-free people will understand. If you eat gluten-free, I think you’ll nod 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 11 years. It’s been so long that I can hardly remember what life was like before celiac disease.
While 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 gluten, a protein found in wheat, rye, and barley. You cannot follow a low-gluten diet nor cheat on your gluten-free diet.
Even just a crumb of gluten can set off an autoimmune attack in people with celiac disease and 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. Hypervigilance and being “too gluten-free” is real.
For better or worse, gluten-free people must continually justify how they eat and advocate for themselves, yet they continue to be dismissed as a “fad diet” or made fun of by late-night talk shows.
Today, I share 21 struggles only gluten-free people will truly understand.
Do you relate to any or all of these struggles? Please share in the comments below. And be sure to read the comment section. This post has garnered more than 100 comments.
(1) Paying More for Less Food
Have you ever noticed that regular wheat-flour pizza costs more than gluten-free pizza, but you get a much smaller pie and a $2+ surcharge just because it’s gluten-free?
You also don’t have to look outside the grocery store to see the “tax” gluten-free people must pay.
Take, for example, the following Krusteaz baking mix. The wheat flour mix costs $0.20 per ounce. The gluten-free version costs $0.29 per ounce.
“I like paying more for less food,” said no gluten-free person EVER!
(2) Having to Send Back Food
A tiny bit of gluten can make us sick. If a salad is mistakenly covered in croutons, or the burger we ordered came with a bun, we must send our food back.
We can’t just pick off the croutons or remove the bun because gluten crumbs were touching – and contaminating – our food.
We’re not trying to be difficult when we send food back and request one made sans croutons or bun, but we sure sound like divas!
We’re not trying to be difficult when we ask a million questions about what’s in our food and how it’s prepared. We’re only trying to order a safe meal and prevent such unfortunate mishaps from happening in the first place. And we just want a normal night out with friends and family without making a scene.
Photo: See the stray spaghetti noodle in my bowl of gluten-free fusilli pasta? This dish had to go back immediately. (The device in the picture is a Nima Sensor, which tests food for hidden gluten.)
(3) Servers that Think Rice is Gluten-Free
Eating out when you’re gluten-free can be a frustrating experience, and it’s why I wrote an entire book about how to eat out gluten-free.
Many servers have told me I can’t eat something because it has rice. However, they don’t know that rice is gluten-free and a staple ingredient in a gluten-free diet.
Sadly, few people know what is and isn’t gluten-free. We can never assume someone knows gluten-free like we know gluten-free.
And that means that every time we eat out, we must spend precious time explaining and educating the staff on what we can and can’t eat. It’s exhausting.
(4) Having Dozens of Flours in Our Pantry
Baking used to be so easy. I once had one flour (all-purpose wheat flour) in my pantry. Now, as a person with celiac disease, I have a ton of flours, starches, and weird ingredients, like xanthan gum, in my pantry.
Only gluten-free people understand the need to blend different flours, starches, and gums to get a recipe to taste just right and mimic the taste and texture of gluten.
We also buy different flour blends because different brands work better in other recipes. For example, I use Better Batter almost exclusively for cookies. But I use Hand + Heart Gluten-Free Sweet Dough Mix (formerly Lorraine’s) exclusively for gluten-free cinnamon rolls.
(5) Realizing There’s No Food For You
Imagine going to a wedding, special event, work conference, etc., and everyone at your table is eating, but you’re unsure if there’s anything safe for you.
When you ask the servers if there’s anything gluten-free or tell them you pre-ordered a gluten-free meal, you get passed from person to person. Everyone at your table has finished eating by the time your food arrives.
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 who assured me I could eat during my 10-day all-inclusive trip, where I knew I’d be at the whim of a tour operator.
I found another story when I arrived—no food for me. I was hungry, frustrated, and emotional as a result. It tainted my experience, no doubt.
Gluten eaters don’t understand the emotional toll a gluten-free diet takes, especially in high-stress, out-of-the-normal situations such as when traveling or cruising. Thank goodness for Celiac Cruise and gluten-free resorts, both of which offer dedicated gluten-free dining experiences.
(6) People Judging Your Food
My guests judge my cooking and baking more critically, especially those who don’t ever eat gluten-free.
“It’s not that bad,” I’ll hear, or “I could eat this if I had to.” Geez, thanks for your (gulp!) compliment.
(7) Realizing Bread Will Never Be the Same Again
If you find a decent gluten-free bread, I’d really like to know about it, please.
Update: I enjoy a few brands of gluten-free bread these days, including Canyon Bakehouse and Outside the Breadbox (Colorado only), and I even bake gluten-free sandwich bread and gluten-free sourdough bread, but bread is not the same as it once was.
Toasting gluten-free bread makes a world of difference in taste and texture. Cold gluten-free 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 home is a significant source of anxiety and a lot of work.
A lot of explaining and planning goes into these rare occasions, all of which I explain in my article, 10 Tips for Hosting Your Gluten-Free Friend for a Meal.
Plus, I often spend the day cooking to bring a few safe dishes to my friend’s house. I rarely get to sit back and be hosted.
(9) Never Getting a Break From Gluten-Free
While people on various diets will allow themselves “cheat” days or don’t fret if they eat something outside their dietary 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 or take a break from our diet on vacation.
We can’t take a piece of food offered to us without reading the label first.
We often feel like we have to share our “diet” with strangers at events who are curious about why our food is different from theirs.
And we can’t attend an event or get on an airplane and expect a gluten-free meal to await us. We must plan, order ahead, prepare for the worst (by packing gluten-free snacks), and hope for the best. It’s exhausting!
(10) Restaurants Without a Dedicated Fryer
Gluten-free people love French fries too, so when a restaurant doesn’t have a dedicated fryer, and we can’t order French fries or other fried foods, we’re a little bummed.
But when a restaurant offers a gluten-free fryer, you bet us gluten-free folk can’t stop talking about it. These restaurants become some of our favorite go-to places to eat.
(11) Taking Forever to Grocery Shop
Until you’ve been gluten-free for a few years, grocery shopping can take forever.
When you’re gluten-free, there’s no such thing as a quick grocery run. You must check labels carefully, learn new brands, meal plan on the spot, and sometimes even go to multiple grocery stores to find the gluten-free bread or pasta you like most.
Update: The Fig Food Scanner & Discovery app can make grocery shopping easier, albeit never easy. With the app, you can scan the barcode of a grocery item, and Fig will alert you to questionable ingredients, if any.
(12) Decoding “Gluten-Free Friendly” Menus
We 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 them most. Sound familiar, Panera?
These restaurants are just trying to cash in on the gluten-free “fad” without providing a safe gluten-free meal. Shame on them.
We want restaurants to offer a gluten-free menu with a few items they know they can safely prepare for us. Is that too much to ask?
(13) Gluten-Free Pizza That Isn’t Safe for Gluten-Free People
The mainstream pizza joints offer gluten-free pizza that isn’t really gluten-free. While Domino’s, Papa Murphy’s, Pizza Hut, Little Caesars, and Papa John’s offer a gluten-free crust, none recommend their pizza for people with celiac disease. Oh really?
Quit dangling unsafe gluten-free food in front of the gluten-free community. It’s not nice.
(14) Gluten in Rice Krispies and Corn Flakes
(15) People Calling Gluten-Free a Fad Diet
Eating gluten-free is no fad diet for the millions of people with celiac disease or who suffer from gluten intolerance. Quit calling it a fad and thinking it’s okay to dismiss us as nobodies.
Gluten-free is no fad diet, and if you still think that, you’re just a big old ignorant bully.
(16) Always Having to Bring/Pack Food
It’s such a drag to bring our food wherever we go, but we must because we never know if there will be safe food awaiting us, even when we’re assured there will be. We’ve all been let down too many times to count.
On top of that, there are only so many non-perishable cold, gluten-free foods you can pack and eat. At some point, we all need and want a warm meal.
(17) People Who Say “I Think It’s Gluten Free”
I was at an event where I requested a gluten-free meal three times ahead of the date, yet the plate of food in front of me came with this caveat, “I think it’s gluten-free.”
Wait, you only think it’s gluten-free? You don’t know for sure?
Come on, people. I need a little more assurance than that!
I’d never 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!” I’d never serve someone with a nut allergy food unless I knew it was nut-free.
Please don’t just think it’s gluten-free; know it is. Thank you.
PS: It’s always lovely when restaurants mark my food “gluten-free.” Knowing that it’s the gluten-free meal I ordered gives me peace of mind. Red Robin always adds a purple toothpick to allergy orders.
(18) Sad Desserts
While we appreciate people trying to accommodate our special diet, please don’t forget that we love dessert, too.
Sad desserts, like rice pudding, Jell-O, and vanilla almond cake, are not satisfactory options. We enjoy chocolate cake too.
One restaurant in Colorado, West Main Taproom, offers the most beautiful piece of gluten-free carrot cake I’ve ever seen or had. Check it out:
(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 and isolating, especially if you’re the only one who needs a “special” meal.
I attended a recent gathering, and everyone was enjoying appetizers, pita bread and hummus, noodle salads, stews, and breaded chicken. Of course, none of it was safe for me.
While I waited (and waited) for that special gluten-free meal promised to me, I felt so out of place (and hungry!).
Finally, after everyone had finished their meals and were on to dessert, I was served a sad piece of chicken breast topped with bean sprouts (see picture below). I started to cry. I couldn’t help myself.
We feel incredibly uncomfortable in these situations. Other people feel guilty eating in front of us. And if we complain, we are made to feel like we’re high-maintenance and ungrateful.
(20) Dealing With Fake Gluten-Free Eaters
When well-meaning friends tell me they eat gluten-free, too, we think they’re serious about it. We even go out of our way to bring them gluten-free goodies and support them however possible.
But then we get so confused when we see them eating gluten or talking about how they still eat gluten occasionally.
Obviously, they can do whatever they want, but they don’t realize that their wishy-washy actions affect us and our ability to be taken seriously.
We hear things like, “My friend Heather eats a little gluten from time to time and is okay. How come you’re not?”
How can we get servers, caterers, friends, and family to take our diet seriously when other so-called “gluten-free eaters” are okay with eating gluten from time to time?
(21) Ill-Informed Doctors and Advice
The gluten-free community has put its trust in doctors, but so many have let us down.
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 about.
One doctor told my friend that eating 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 problematic. 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 don’t get it and still believe a gluten-free diet is just a fad.
Please note there are great doctors out there who get it. You just need to find them.
The same is true of dieticians. Some have little knowledge of gluten disorders.
A student enrolled in my SIGNATURE Gluten-Free Course told me she learned more from me than her dietician and two GI teams.
Am I Speaking Your Language?
I have a feeling you have faced many (or all) of these struggles. The struggle is real.
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?
Please leave a comment to share, and read the 100+ comments below to see what others have said.
New to gluten-free? Learn more about my popular SIGNATURE Gluten-Free Course to fast-track your learning and healing.
Like to eat out? Learn how to eat out like a pro when you download The Ultimate Guide to Eating Out Gluten-Free.
Need help? Learn more about my 1-on-1 celiac health coaching.
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- Can You Be Too Gluten-Free? How to Balance Dietary Vigilance Without Losing Your Mind
- What is Celiac Disease?
- 6 Reasons Why Gluten-Free Food is So Expensive