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.
Thank goodness we can find dedicated gluten-free fryers at Red Robin, Five Guys, and Chick-fil-A when we crave fries.
(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
It’s so darn confusing when manufacturers add ingredients like malt (gluten) to Rice Krispies and Corn Flakes, which primarily contain naturally gluten-free ingredients (rice or corn). Ho hum.
(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.
Related Reading
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.
More related articles:
- 10 Facts Your Doctor Doesn’t Know about Celiac Disease and Gluten Sensitivities
- 10 Gluten-Free Diet Mistakes You’re Probably Making
- 10 Surprising Celiac Disease Myths Debunked
- Wait! Read this Before Buying a Nima Sensor
- 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
You are definitely not alone!!
I was diagnosed with celiac a few months before the pandemic lockdown. I was still trying to figure out what I could eat , so trying to shop wearing a mask and decifer ingredients was a nightmare. Also with the panic buying, many brands were sold out. I also live in a very small town, so it was very difficult! But I persevered! It’s much easier now! I’m so thankful for you all , my celiac family! Your posts remind me that I’m not alone!
We had a catered function at work the other day and I was told by my boss I can head down to the street to buy whatever I want. I wasn’t given much idea of what the function was about and I was very busy with some urgent tasks so I told my boss I’ll just eat my lunch I bought from home. It ended up being a surprise function for me being awarded employee of the year but I couldn’t eat any of the food and I had to leave the function to get my lunch from the fridge on another floor. I then had to spend almost the whole lunch explaining why I was gluten free and had people talking about how they try and eat less gluten. The worst thing about the catered lunch is I know they can order GF meals, I’ve seen other functions involving other people were there are specific GF meals for people.
Ugh. I wish I could tape this article to my head and show it to every person i meet. Even my friends, I’m out with them at the moment and they’re just raving about the stuff they’re eating right in front of me. I want to punch them so bad.
Just seeing this a few years late. Can totally relate to restaurant servers not getting it. Group dinner in London…only one entree choice for all…they did bring out a gluten free version of their mushroom toast for appetizer. (I can’t stand mushrooms, so that was a bust)…they decided to accommodate all of the vegetarian, vegan and gluten free diners with the same entree, a vegetable curry. I don’t like curry, tried it, couldn’t eat it. Dessert for everyone else was a chocolate brownie with ice cream and raspberry sauce. Their online menu had that listed on the gluten free menu, fabulous, I get a brownie! Nope…brought me an apple rhubarb crumble with vegan ice cream. I asked if the crumble was made with gluten free flour, the server went to ask, came back saying the topping was just sugar and it was the vegan option. What? That topping was NOT just sugar, and I’m not vegan! I was ready to cry and got up and walked out, hungry at 10 pm. UGH!
Hi Lydia, I’m sorry to hear this. Is there a trusted adult you can confide in about grandma sneaking gluten in your food? That would be like giving a diabetic child extra sugar. It’s child abuse.
Hi,I’m a thirteen year old that was told earlier this year that I had celiac disease and had to go gluten free. And eating gluten gives me tummy aches. And my grandmother can not get it through her head that this is actually a disease. She says it’s all in my head and likes to hide gluten in my food. Which bugs me. I mean it gives me tummy aches and will mess up my body even more if I continue to eat it. Don’t you get it?
Thanks for a very enlightening article and which supports gluten-free efforts as well as a bit of comic relief. Having been gluten-sensitive for the past eight years or so it was difficult to adjust to a new way of eating and I fought it for some time. Finally, I gave up and began the process of accepting my new eating lifestyle and having done so am far better and happier for it.
Thank you so much for having this post. I was diagnosed about 8 years ago, so you would think I would be used to it, but things still get to me.
I went to an event tonight that I was really looking forward to. I did the due diligence ahead of time and spoke to the event coordinator and spoke to the restaurant which happens to be one that does gluten-free very well. They told me not to worry that they understood that I had celiac as well as a fish allergy and they would make sure there were plenty of choices for me. Got to the event and the only thing that was gluten-free and fish free was broccolini.
The representative from the restaurant was very rude and told me I just needed to make that work. I would like to ask these people how they would like to spend an entire afternoon and evening having consumed broccolini. Not to mention of course I paid $150 a plate. I almost cried and then left the event once the dinner started because I was so shaky.
The thing that really makes me mad is I offered to bring my own meal and was reassured several times to not be so ridiculous and they would absolutely have plenty of choices. The people at my table were embarrassed or eye rolling. All I would like is for equal treatment and not to have to look like a diva in front of everybody. Food should be a basic right.
Thank you for this article and all the comments. My son’s fiancé is gluten-free (not celiac) and dairy-free. Her food issues started about 1 1/2 years ago, just about 6 months before they started dating. They live about 9 hours from us but when they come, I do all I can to make delicious food with hers the same but modified as necessary to suit her needs. My son ministers to her and encourages when she’s down about her choices and is very protective of her diet and health. I read this to learn more. She is still learning too and I aim to learn with her and to teach her what I learn. I took notes on all of the comments (read every one) so I can pass on all of the helpful comments about delicious breads, great restaurants, and places to travel.
I’ll be making the wedding cake gluten and dairy-free, transporting it 9 hours (I used to sell wedding cakes), and making sure the rehearsal dinner is special for her—even if I have to make her portion myself.
Here is something I have found that is delicious—King Arthur flour, as well as cake, cookie, and brownie mixes. I’ll be using their cake mixes for the wedding cake. Their gluten-free cake is actually more delicious than any cake I’ve ever had. Since she’s not super sensitive, I’ll be able to make only the tier they cut together and the top tier they save gluten-free. The other tiers will be regular cake, but I’ll be sure there is no contamination. I’ll use almond milk and Crisco in the icing for all the cake.
Thank you all. And I joined the support group mentioned and will send her the link too.
Since she’s also dairy-free, we joke that she can eat eggs, just not cow eggs. 😁
It really sucks when you work in a large company that regularly hosts BBQ’s, ice cream days, (I’m casein free as well) bagel days, surprise treat days etc. The burgers are usually the cheap ones with “fillers” that are most likely bread crumbs or flour, and on all those occasions I still have to pack my lunch from home and then eat alone, because I have to go warm up my soup, and by the time I get to the mess hall with my soup, the others are all finishing up and it feels weird.
I always get an apology that no one thought of adding a gluten-free option, but nothing ever changes.
Love these additions!
I was diagnosed with celiac 21 years ago, and I relate to every single one of your struggles. Here are a few more of mine:
— Mexican restaurants where I can’t eat the tortilla chips. So many of these places! I *hate* sitting there watching my family and friends chow down on basket after basket of hot, delicious-looking chips that would make me sick. In fact, just before the pandemic I announced that I’ll no longer go to any of the Mexican places that use shared fryers for their chips—and you should have heard the groans. Which brings me to…
— Family and friends who complain that I won’t go to their favorite restaurants that make me sick. Why is it such an imposition to ask them to choose a place that’s safe for me? Being deprived of a favorite restaurant for one night is nothing compared to being deprived of gluten for life—and yet they make me feel guilty way too often.
— Receiving gifts of non-GF food. I am so careful to never gift anyone with food they can’t eat, but no one returns the favor. Every year around the holidays, friends and business associates send me lovely (expensive!) food that would make me sick. Godiva chocolates, fancy brownies, gourmet cookies, baskets full of gluten-filled crackers and other treats. Oy! All I can do is say thank you and hand it off to other people to eat.
— Restaurants (and the less expensive cruise lines) that make their food gluten free by removing everything that’s tasty. Steak, chicken, and seafood with no spices or sauces; salads with no dressing; potatoes and vegetables with no seasoning. Blech! (I also love the way these places expect me to be oh-so-grateful they have something for me to eat. <—sarcasm)
— Too few GF baked goods that aren’t “free from all allergens.” I get that there are many people out there with multiple allergies—I really do. And I feel terrible for those people (living like that must be so awful!). And I’m glad there are baked goods for them. But I’m less than thrilled that nearly every baked product that’s gluten free is also free of the rest of “the 8 allergens.” Many of us can eat dairy and eggs and lots of other things that would make gluten-free bread and other baked goods taste better, but GF bakeries hardly ever include them.
— Oats in so much GF food. A significant percentage of celiacs (including me) can’t eat any oats at all, not even purity protocol oats. Yet so many GF products include oats! I have to check every single label, and it is especially hard to find good GF crackers or cookies that don’t include oats. I can’t tell you how many people have excitedly informed me I must be so happy that I can Oreos now that there’s a gluten-free version. But nope, because GF Oreos include oats.
I could go on, but I’ll stop now, lol! Thanks for this post and your great site!
OMG people who really understand what it’s like to eat gluten free. I almost have a panic at the thought of eating anywhere else but home. I have to eat gluten free and low sodium. My husband tries so hard to by groceries that I can eat but he gets frustrated too. I try to stick to fresh foods as much as possible. I even have trouble getting my insurance company understanding that any medication I take can not have gluten or contaminated with gluten that is a constant struggle in it self. I order some food from Vitacost.com. Good luck to you all;)
Greetings all fellow GF survivers. Yes, I meant survivers. I just found this article and it read like my past 11 years and future. I was first diagnosed with gluten sensitive back in 2009 when diagnosed with a sever Migraine disability. Who knew food could cause this, not me at that time.
This new way of having to eat was hard and for a few years I was still consuming a little gluten until I caused myself to 1, become fully celiac and 2, 100% allergic to wheat. If I even touch the stuff I break out with hives and blisters. Yuck.
What I’ve experienced with this food allergy isn’t just food anymore. Gluten is in your toothpaste, shampoo and conditioner (my hairstylist notice my hair falling out in clumps) makeup, detergent. You name it it probably has gluten as a filler.
Non-GF people don’t and some refuse to understand. Aka(my parents). They tried but would get mad when I wouldn’t and couldn’t eat their meals.
I am now also allergic to anything corn. Which has the second highest gluten count next to wheat. Yay me NOT!
Over the past 3-4 years my twin girls who are 18 are now have issue. So this can be hereditary.
What I am thankful for are all the new products that are coming out that are geared to us GF survivers. CF too.
One yummy treats is Smash Mellows Marshmallows. Add that to Pamela’s GF/CF Honey Graham crackers with hersey chocolate. 🤩😋 S’mores anyone!!!
Going out is hard and since I would like to get back into the dating sene it’s going to be harder. How do you tell someone new without driving them away.
My girls and I laugh often about this issue as we realize dating anyone of us just due to food allergy alone is/could scare any future (person) away.
To the articles writer. Thank you. Thank you from the bottom of my heart for putting these 21 notices out there. I wish this could be handed out to every company that makes, produce, and creates food and everyday items that we consume. It also needs to be sent to families, schools, conference centers, caterers, and social halls. More people need to understand as I see that more and more people are becoming part of this survivers group.
GF/CF strong. Since being off this crap. giggle! I have felt better, taken less medication, can sleep, and my hair grew back even curlier after having to shave my head in 2019 due to massive gluten reaction.
I was diagnosed with a gluten sensitivity and multiple other food sensitivities in 1997. It was nearly impossible then to eat in a restaurant or to find healthy options in the grocery store. While things have certainly changed, i was in the hospital last week and my chart clearly has all my food allergens listed but i was still served my food with pasta all over it, and not the GF sort. The kitchen staff couldn’t get any of my meals right. Thank you for this article. I am still struggling to eat well after all these years and finding new health struggles asking the way with others trying to poison me daily with ignorance of the issue!
To everyone on the rigid gluten free path, good luck and i wish you the best! You are not alone even though the rest of the world wants you to think you are!
This is a great article and so relatable for my daughter. She is 13 and has been gf, df, nf and, for a while, ef, all her life. When she was younger I could greatly insulate her from the problem. As she has gotten older, there have been many tears because she wants to eat the things her friends eat. Since I love to cook I make just about everything from scratch. Now her friends want to eat the food I send with her! I am trying to equip her since one day she will have to leave home. There are not many safe options. More, people/restaurants are flippant at times! I teach her to vet all eateries. And under no circumstance will she eat from someone else’s kitchen. NOT HAPPENING. Cross contamination is too easy. Her allergic reaction will scare the average person. I must, however, prepare her that not much will change. Sad, but a tough reality.
To everyone in this boat, HANG IN THERE. I get it. I totally get it. I am frustrated, too. It’s my child I am earnestly trying to protect, so I understand this journey. I wish I could change things for her, but I cannot. My household eats just as you do because it is simply easier. We do not eat any place she cannot partake. If we are guests someplace, we do not eat if she cannot eat. One for all and all for one.
I’ve only been gluten sensitive for about 6 months and already it’s been heartbreaking. I spend a lot of time focusing on healthy eating. I am vegan and I love my vegan diet and now all the sudden I have a ton of foods that I can no longer eat I have to redesign all my recipes. Also my husband is not gluten sensitive and since we eat different foods my kitchen is a challenge trying to keep from contaminating my own food. Kind of heartbreaking. Also I am a travel agent and I have no idea how I am going to be able to travel and have gluten free food.
Hello – I have been out of need gluten free since 2009 before it was the “fad” I had to travel for work sometimes rural locations, and yes restaurants were beyond aggravating when you have to explain that potatoes or rice are not gluten. I have been faced with all of the above and on top of that I am LOW FODMAP, and dairy intolerant as well. I do have a couple of great friends who go out of their way to find restaurants that specialize in us special people lol.
I will tell you I love the SHAR rolls and bread the UDI’s brand. glutenetto cookies are great I usually have to find them at a home goods. some of the best biscotti. I search out bakerys that specialize in gluten free when I just want a treat. Jason Deli is one of my favorites because they actually have real options not just a salad. I try different brands and
Trader Joe’s gluten free bread(green wrapper) is great! Very soft. I would of let that stupid lady at the table have it. What a horrendous individual to make that comment. You’re a better person than I am. Eating out is riddled with anxiety for me. So many times I’ve been served the wrong stuff and almost had a hospital trip.
Hi
I was diagnosed with celiacs disease in October last year.
My favourite bread is scharr although it’s not quite as good as the gluten bread I used to have but I’d rather not eat gluten than face a gluten attack!
One of the things I’ve struggled with is this: I’m only 12 and I go to lots of my friends sleepovers when we all wake up and go down for breakfast and my friends dig in to pancakes ,Coco pops (cantain malt :() toast and Nutella and more delicious breakfast foods I wait whilst the sachet of gluten free porridge that my mum gave my to eat for breakfast warms up in the microwave everyone else eats and I dip at juice. When it comes out it looks boring, sloppy and dull compared to what my friends are eating. Actually I like it just like gluten porridge but any porridge compared to my friends food is boring. Someone asks me if it’s nice and I say yeah it’s quite good. Anyway my problems seem nowhere near as bad as yours. 🙂
Nice to hear another gluten free person comment on the frustration we often face. The worst time for me is ordering at restaurants. In Miami there are restaurants that have gluten free offerings or substitutes on their menus. These often are not very appealing choices. Can’t tell you how many times I have ordered a gf item only to be told they were out of it that day. Many restaurants here do not have gf offerings and seem to be totally unaware of this condition. I sometimes feel embarrassed to have my friends hear me ask for gf items every time we go out to eat. On a more positive note, the selections of gf products have improved considerably since I was first diagnosed 8 years ago.
Omg this totally spills all my feelings!!! Thank you for putting this out there!!!! I always hate feeling like a burden!
Sheri, P and O Cruises are the best out there for offering a gluten free menu, the choice is vast. When trying the buffet the chef pointed at 3 dishes out of ten that HAD GLUTEN, they even sent to my cabin a plate of 4 different gluten free cakes!
My daughter has celiac. It’s always hard to go to family gatherings or her to go to work parties and there’s nothing there she can eat. And the salad thing at restaurants is upsetting too.
This was incredibly validating. It’s a real struggle. The waitstaff who just don’t understand. Not getting enough to eat because you skip the bun/other bread. Always having to question everything and mistrust everybody. It’s hard. And I will just add one more. The restaurants that hand you a tiny illegible chart (or a 3” binder full of garbage) and then take your regular menu. You are sitting there trying to read the stupid thing 20 minutes after your family is ready to order and then when you do order you realize you don’t know what side dish to order, the meal price, etc. because it’s not in the gluten free menu and the staff won’t give you a real menu.
The best gluten free bread I’ve had was on my honeymoon in the Bahamas. It was a very pricey restaurant that gave me gluten free bread before the meal. My struggle at most restaurants, when they provide free fragrant warm bread to the table but I get to watch everyone else in my party enjoy the bread.
But the worst is hearing that someone eats gluten free, but they are willing to eat gluten from time to time and deal with the consequences. They break my heart that they are willing to cut their life short and destroy their body for a slice of bread. I’m sorry but I hope to live a long life to watch my kids grow up.
I was diagnosed 30 years ago, and there are many more options now than there were back then. However, the struggle never ends. I cannot even count the number of times I have been served a salad while the rest of the table was served a wonderful meal. Even after all this time, it still hits me really hard sometimes. I was at a conference recently at a place where the chef has always been very good about providing a gluten free version of whatever the “real”meal is. I asked if a gluten free version was available and it was. Another person asked also (who eats gluten free as a fad) and she requested a salad. After waiting so long that the rest of the table had finished their meals, I was served a salad. The server decided not to ask for the gluten free version for me…since there were two of us, it was so much easier for the kitchen to just make two salads. Hoped that was OK with me. I think she could read the stunned look on my face…the salad had toppings I could not eat because of another actual allergy…I confess I got tears in my eyes and that is humiliating. Ended up eating the kind bar I had in my purse.
The best gf bread I’ve had is Franz 7 grain gluten free. It makes great sandwiches fresh and is delicious toasted. I live in Canada and have to go across the border to purchase it! Franz gf bread is made in Portland Oregon! It’s good I live close to the USA border. I am celiac and the cost of gluten free food is outrageous! I very seldom eat out as it’s a huge gamble 🙁
Just feeling alone when a meal is served incorrectly and the people at my table just look at me. I try not to be a PITA but I just feel like it because I can tell by their faces they don’t get it.
And I really get super tired of over asking to ensure a meal will be safe. It’s exhausting. I used to love going out to eat. Not so much anymore.
I get super sad that I find myself tearing up over the new life. Don’t get me wrong: I’m blessed, I have a lot of things I can eat and for all of it I’m grateful. It’s just a hard new life, and although blessed, I get sad over food a lot.
Have you ever tried Udi’s gluten free bread? It’s my favorite bread (especially toasted) and personally I think it tastes better than any gluten sandwich bread. I buy the blue bag and I couldn’t recommend it more.
Hang in there Shirley and happy birthday 😊
I’m sure everyone with Celiac can agree the holidays are the worst! I am still recovering even though my sister did her best at providing plenty of gluten free options. I’m sure it was cross contamination that did me in since the rest of the food (deserts,deserts, deserts!) was loaded with gluten. I was just recently diagnosed in May so am struggling to adjust to this new way of life. Had a melt down last night because it was my birthday and my sister-in-law usually treats me and her cousin to lunch and I had to cancel because I was still sick from Christmas and am now not comfortable eating at restaurants. I plan at passing this article on to the people in my life who just don’t understand what I am going through. Thank you for sharing. I find all of your articles helpful in getting through a life without gluten. As far as bread goes, I recently found a bread by a company called Ener-G. It is the only bread I have been able to eat without toasting. I buy it at Marianos.
This is so relatable! The anxiety I feel about going to someone’s house or traveling is real. I appreciate when people try but I so often don’t trust their food preparation anyways so I don’t eat it. Then I look rude for not having something they went out of their way to make. There’s nothing like being the person bringing their own food to everything or having to pick certain restaurants that are safe. I constantly feel nervous about eating anytime I’m not at home! Great relatable article!
I totally relate to this, I have been gluten free for almost 11 years. I hate work functions, I fake sick to get out of them so I don’t have to ask what is in that or watch people make sad faces at me when I can’t eat what they are eating. I often don’t get asked to lunch because it seems like I am being difficult because I can’t go with the flow. Last night a waiter gave me a dirty look because my burger came on a bun when I specifically asked for it not to be on a bun and he had to take it back. I think the fact that I am overweight and am gluten free blows peoples minds… apparently I should be skinny and close to death! Oh and the best English muffins I found were made by Foods by George and they are going out of business, which sucks because they truly were the best gluten free bread product I ever had!
I can completely relate to all of these! I dream of going on a cruise where I don’t have to worry and have so much anxiety just to eat a meal or a snack. Thanks for the great, validating article
I definitely can identify with the conference reference. Last year I went to a professional function and not even the soup I could drink. There was dumplings in it, Caribbean style. I am also on Warfrin so I couldn’t have the salad. I had 2 ginger ale for the night.
I’m so sorry to hear this. Please find a new doctor who believes you. It is too bad that a dr doesn’t see value in understanding gluten disorders in earnest. Hugs!!
I love your article. My daughter is only ten and she has had stomach aches for a couple years now. By process of elimination I determined that it was the gluten in her diet. I have her eating gluten-free and her stomach aches have subsided. When we went to the doctor they keep blaming it on other things like constipation or heartburn. But I can see that the gluten-free diet is what helped her. I really believe in your comments about the doctors I just don’t think that they are as informed as they should be. I can see that the doctor is skeptical about it being gluten in her diet. In order to be tested she had to go back on gluten or for 6 to 8 weeks and she’s really been suffering. I just don’t think the doctor believes us.
Thanks for the great article. It is so true. Research Amaranth. It is a seed that has more nutrients then most fruits and vegetables. It’s available on Amazon as flour, seeds, as well as seeds for planting.
Cheers, Barb
This is 100% accurate!! Thank you for this article!!
Thanks Belinda. Wow pro baker!! The Nima testers are on sale this week only BTW.
Thanks, I learned a lot from this article. I will definitely be looking into a gluten tester! I have been gluten-free for almost 2 years now and I feel all the frustrations. I was actually a professional Baker when I realized I was gluten-sensitive so I quit my job and learn how to make jewelry, no gluten there 😁. It has been difficult but the best thing I have done for my health probably ever!!! And yes the struggle is so real. I plan different grocery store trips on different days to keep my frustration level down. Also Bob’s Red Mill has great gluten free products, I really like the 1 to 1 flour.
We found a gluten free ‘chip’ shop in St. Neots, Cambridgeshire, England. The fish and chips were superb. They found having two different fryers for everything was a bug bear, so now it’s all gluten free! Way to go.
Thank you for this. I was recently told I hace to switch to gluten free and the transition has honestly been awful. My first solo trip through the grocery store almost made me cry because it was so overwhelming.
Sweet Elisabeth’s Organics! Gluten free, nut free, organic with quality ingredients and absolutely amazing! They have a bakery in CO and FL. Find then on Instagram and their website and you can order their premade flour mixes and recipes online. Nothing beats going to their actual bakery for breakfast and lunch. You will not be disappointed!
I hate when people bring gluten into my house without asking!!!
You NAILED IT. This—ALL of this—is so true. The memory that makes my blood boil is when a cousin approached both foods—exactly the same, except one was regular pasta and one was gluten free—and she said “which one is the good one”?
And that, to me, sums it up.
This year I hosted Thanksgiving to make it easier for everyone. And my MIL brought her own filling and pumpkin pie. My food and desserts were thought of as sub-par. (And this is not just me, it’s her own granddaughter too.)
If her granddaughter had a severe peanut allergy, would she bring a peanut butter pie into this house?
The last “symptom” of celiac disease may very well be anger. And I’m hoping that one improves with time. Because none of the other symptoms will.
I feel all these frustrations! I was diagnosed as celiac about 3 years ago and it’s been a journey. Potlucks, weddings, conferences are all especially difficult. Eating out can be a complete pain. My boyfriend and I were recently in San Francisco and we wanted to try a restaurant. We walked in, asked to see the menu before being seated and I then explained to the hostess I have celiac and can’t eat gluten or gluten contaminated food. Turns out her sister has celiac and she very frankly said I shouldn’t eat there. In front of the owner. I thanked her profusely for her honesty. She clearly got it. The owner apologized and wished they could accommodate me…but he couldn’t.
I also dislike when someone says they are gluten free and then has “just one piece of bread.” Uhhh what?? I also know someone who says she has celiac but I saw her chowing down on garlic bread, like 4 pieces, at a crab feed and told me she used to chew bread at a restaurant table and then spit it into her napkin. I would be a mess if I did that! My guess is that she doesn’t have celiac!! 🤷♀️
Thank you for the article. It validated all my feelings over this diagnosis!
Lastly my son has type 1 diabetes, also an autoimmune disease, and he gets tested every year for celiac because he is at high risk because of my diagnosis and his T-1. He has a real fear of developing celiac. He sees my struggles and he knows it’s real. I tell him eat up gluten while you can- never know!!
So many things! The doctor part may have been what I related to most. I have a wonderful doctor. She knew very little about gluten issues before I brought them to her attention. After being sent to various specialists (maybe it’s fibromyalgia or rheumatoid arthritis…) I ultimately did my own elimination diet and found gluten to be the culprit. I had been in various degrees of misery since I was 14. My doctor still isn’t an expert, but she has been able to advise her patients of the possibility of gluten being at the heart of their health problems.
I was diagnosed with Celiac January, 2017. Every now and then I will hit the frustration point and could cry that I can’t eat what I want because it needs to be gluten free. This is especially true when we are traveling so I eat a lot of salads. I am very fortunate that family has been very supportive. Since both my daughter and I have Celiac, it is a little easier for family meals.
Anytime we eat out at a new restaurant, when the wait staff comes to the table I let them know that my food NEEDS to be GF. The request has not been met with any negativity. I have identified safe foods in restaurants that we go to frequently and that is what I always order. It’s not boring to eat the same thing because it’s safe and I can enjoy the meal with my husband.At one restaurant I bring my own GF crackers so that I can also partake in the liver or salmon pate (no cross contamination). At another restaurant the bartender introduced me to the Ice Pick drink because I couldn’t drink the beverage I wanted because it had malt in it. It is now my go to drink at this restaurant and he even watches out that the Vodka is GF.
I’ve tried many of the breads mentioned in the post but I actually like the Udi’s Multigrain the best. It looks more like a regular loaf of bread and it tastes fine toasted or not. My family tells me it’s because I don’t know what real bread tastes like. At least I can make a sandwich that the meat and cheese isn’t falling out of. I’ve made my own but….it’s easier to buy it.
I don’t feel deprived and with Thanksgiving just around the corner, I’ve mastered pumpkin pie with a GF crust and my next attempt will be Apple Pie! Life is good.
OMG, yes!!! All of these! I’ve been taking a “snack bag” with me everywhere I go lately, just in case. Wanna stop and eat while we’re out running errands? Sure, go ahead and have that luscious chicken salad on a croissant. I’ll just sit here and eat my rice cake or GF granola bar. Mmmmm, just as good as your sandwich…. Not.
I think the worst part for me is when I go to a party or private event and there isn’t anything gf for me to eat. At restaurants I can handle the conversations with waiters and chefs but with people who aren’t in the food industry it can get very emotionally charged, and it seems to me that because I am explaining my special needs diet they get offended like I’m judging them for eating gluten or they just don’t want to be bothered by accommodating me.
For example, early in my celiac diagnosis we were going to my in-laws for dinner and I mentioned I need to eat things without (listed the no foods and suggested the foods I can eat) my niece rudely said to me well maybe you should just eat before because I don’t know anything about that kind of stuff! Really, you can’t make a side salad so I have something to eat. She acted so inconvenienced and it shocked me. I felt like a total outcast because I was sick. It was a real eye opening experience as to how my life had changed.
Since that experience and several weddings or parties I have learned to eat before I go so I’m not frustrated to the point of being angry and I won’t be hungry which adds to these feelings of isolation, being a pain in the rear, or looked down upon.
Having celiac isn’t the end of the world but it does change things. I’ve been gf for almost a decade now and you can be sure there will be more and more foods in the grocery store because it’s becoming so much more prevalent. My favorite cookbook is Gluten Free Bread In Five Minutes A Day. The bread you can make, I promise, tastes and feels just like real bread. I should know because I am a baker!
I have a severe gluten allergy along with a dairy and soy allergy. So yes I DO understand your frustration but mine is tripled. It is almost impossible for me to go out to eat unless their is a Jason’s deli in town. I have to read every ingredient in ALL things I buy, even if it is gluten free it may contain dairy or soy (almost everything has soy in it). As far as a good GF bread I have found one that is very good. Canyon Bakehouse Mountain White.
I was just Diagnosed with breast cancer so I can’t have sugar any more as well because it feeds the cancer. So I have to cook myself or not eat.
The struggle is real!! So many of these resonate with me especially regarding people that have no idea what gluten is and what it’s in and think you can’t eat rice but you can have a cookie lol! Regarding bread, Against the Grain has been some of the best bread I’ve had pre and post Celiac diagnosis. So far I’ve only found it in a roll form, baguette and frozen pizza. I use the rolls for sandwiches or just as a dinner roll and it’s delicious! My boyfriend who is not Celiac or necessarily gluten free, loves these rolIs. I also like the Canyon Bakehouse for just regular sliced bread. Thanks for sharing!
I so relate! I ALWAYS have a gluten free granola bar or another snack in my bag cause I never know for sure if there will be something for me to eat. As for the bread question, I’ve had good luck with Schar brand for when I really want a sandwich.
I truly appreciate this post and all of the comments. I have been on a diet in the past that was dairy, soy, egg and gluten free. I took my own food everywhere. Eventually I found a Doctor who “treated” me for my many allergies. My body was “tricked” into accepting these foods for a while but now I’m having major problems. Thank you all for helping me prepare for getting back to my allergen free diet. I had forgotten many of the things mentioned. I feel better prepared for what is to come.
Have you tried the glutifan fresh from the bag bread both are nice
I often find myself saying, “yep, I’m one of them.” It is exhausting. I’ve even been in the hospital for my severe sensitivity complications, to be served with eggs and regular toast. The medical field is not even informed. I try not to stress over it, but it’s tough.
How refreshing to find others who understand the hardships. Don’t you love being ‘that snob’ who is ‘too good’ to eat the food served at weddings and potlucks – and even families’ houses and holidays- and only eats what you brought (so what is really going on is you are dying a little inside for wanting what they have and having to settle for what you threw together to bring….while they judge you). Oh, and dont we all love how accommodating everyone is to vegetarians- but their diet is a choice….. Anyway, end of rant. It’s nice to be understood. I have been gluten free for 12 years and 2 of my kids have been GF their whole lives. My son and I are also dairy free- super fun addition- makes life even more complicated. And doctors don’t really get that one either!
A kid we know who has both celiac and juv diabetes said if he could get rid of just one of those it would be celiac. He says that is harder to live with than the diabetes…
Yes! These all resonate. I have been gluten free after developing a wheat allergy about 2 years ago and it can be so hard some days. Baking is one of the most frustrating things that I haven’t figured out. One other frustration is when eating out with people and they are indulging in the bread that is given at the table. They turn to me and say “Oh it isn’t THAT good.” in their attempt to make me feel better or something but really just bringing it to everyone’s attention that I’m the weird one. When I first developed the allergy, I had to deal with a lot of disbelief that it was *that* bad until they watched me break out in hives for stepping into a bakery and have since had to carry an epi pen around with me.
Bread is hard. I have settled on Canyon Bakehouse Heritage as long as it can be toasted first.
I was diagnosed 2 years ago with a rice sensitivity… And 8 months ago with Celiac’s. 😖 I thought for sure my life was over!!! It’s been 8 months and it feels like forever!!! I have put up with all of those things to include my own family poking fun… Now that they understand it better, I laugh at the jokes and I know it’s all in good fun, they don’t push too far but going to a restaurant and talking to the people there makes me want to lose my mind! I hate that so many people have to deal with this but boy am I glad I’m not the only one!!
I second the Schar brand found at Kroger. Their multigrain bread isn’t so tasty that I prefer it to wheat bread.
Yes potlucks are the worst indeed!
Being hosted at someone’s house is difficult for sure, but I truely hate potlucks! At my last job I would get guilted into bringing something and then I typically couldn’t eat anything else… Most expensive one dish meal ever!
I resonate with all of these and your added frustrations! Thank you for making me literally lol and for making me feel not alone and not crazy for all my efforts to not be glutenized.
A great encounter I had at a brunch was the waitress explaining they have many gf options… I noticed of course the gf dish had fries that come from a shared fryer and the other dish had battered meat… needless to say as you stated I ate my gf bar from my bag instead.
I love this post! I definitely relate to most, if not all of these! I was diagnosed with celiac in July of 2018, so I just hit my 1 year. I think my biggest frustration is feeling like I’m a bother to everyone. And then going to Chipotle and holding up the line because they have to change their gloves, wash their hands, and get my cheese and lettuce from a new container.
Thank you Cheryl. We are definitely in this together!!
THANK YOU for this honest post! I was diagnosed with celiac disease in January and I am so grateful to read that someone else has experienced the same struggles!
The extra time at the grocery store, the challenge of explaining to everyone at the table in a restaurant what gluten is, and why I can’t have it, and the strength and determination to say, “Thank you, but I can’t” at the office while everyone else chows down on the breakfast tacos, doughnuts, pizza, sandwiches or cookies that our representatives bring so frequently! Your comments made me laugh and realize that I am not alone in this lifestyle change and they (and you) are much appreciated!
BTW, Schär’s artisan baker multigrain bread is small but delicious and it does not disintegrate like so many other GF breads.
Best to you and many thanks –
Check out breadsrsly.com for really good sourdough bread made in San Francisco in a dedicated, gf facility. They also just started making a rice-free and gum-free sandwich roll that tastes yummy. Also, veganmario.com has really good sourdough bread, as well as pasta, sweets, and non-dairy spreads made in a dedicated gf facility. He offers online classes to learn to make your own products. Pizza class coming up. He offers subscriptions if you find you love his products.
La Brea Bakery bread is a gluten free bread sold at Kroger. Its the best gluten free bread my mom has ever tasted. I had a slice and could not tell it was gluten free. The sell it in white and multi grain.
Thank you for sharing. The people you speak of really make it harder for the rest of us. Ug!
So sorry for your frustration. I work in corporate hospitality and have seen the other side of the coin as well. People who continuously ask for gluten free, (so we prepare separate meals for them) but then decide the pizza or the mac n cheese look amazing and have that instead because “they haven’t had it in a long time”). There ARE people who are on the fad diet “gluten free”, which seriously ruins it for those who are truly celiac. Good luck with your GF journey, I wish you the best.
Walmart brand gluten free bread is the only one i can eat all the others i have tried are not good
Totally! They see it as a fad diet vs long term lifestyle change. Thank you for sharing!
The hardest thing for me is the people closest to me saying, “Are you still on that diet? Here, eat some bread, it won’t hurt you”.
Something I’ve encountered since going gluten free is that people around you will question if what you’re eating is really gluten free or not. Wouldn’t one assume that the person intolerant to gluten and has been gluten free for 3 years would know? I’ve had co-workers inform me that what I’m eating is not GF and that I’ve been lying about my diet. It’s beyond infuriating. Has this happened to anyone else?
I love this article, I believe I have made many of these comments myself.
I was finally diagnosed with Hashimoto’s over a year ago. I have had problems with gluten for two to three years and thought it was something else. I went gluten free and finally went lactose free and with the combination I feel ten times better. I am so tired of having to explain to others that I can not eat gluten and getting the reply’s like (“just this one time won’t hurt (or) “it doesn’t bother me”) I am not you and it does hurt me. I don’t like eating out or going to others homes to eat these days.
I love your article, I do find it quite difficult trying to explain to friends and family that I can not eat gluten. Yea, the struggle is real! I was finally diagnosed with Hashimoto’s over a year ago because of my thyroid. However over the past two to three years I had been struggling with gluten and Lactose. I have went gluten free and lactose free and I feel better and my symptoms are not as severe. I have found that if I want or need bread I will make my favorite gluten free pancakes, not ideal all of the time but it helps.
It would be nice if social gatherings weren’t planned around eating. Think outside the box. The most frustrating question: “so what happens when you eat gluten?” Dah…got an hour? I lost my interest in cooking and baking. It’s such a chore now, even after 10 yrs gf.
A younger gal at work was upset because on my birthday there was fruit instead of cake!
Ug!!
When I was staying in England I read a cake package and on the front it said gluten free but in small (and I do mean SMALL) letters underneath it said not suitable for celiacs so when I read the ingredients I was so annoyed to find that actually it contained wheat starch or something similar!!
Yup. All of these things are real. I actually had to argue with a server once to get mayonnaise. They insisted they could not serve it to me because I was gluten free. I made them bring the jar out so I could see what brand it was, and googled it so they could see online that it was gluten free, before they would let me have some!
Good one!
I love this article! Thanks.
Worst pet peeve for me is trying to be so careful with all those other foods and jump thru all the hoops above only to have your medication use a gluten filler that the FDA does not require them to report and allows them to change without warning.
Good to know. Will look for it.
Walmart has their store name brand rice Krispies. Theirs only like 3 ingredients in them.
Chanda
I get horribly embarrassed asking for a gluten free menu when eating out. It is getting better and I try to do my research before going. Also, I get so angry when a certain nighttime talk show host makes fun of “gluten free”. Like, I haven’t had a real donut in over 5+ years, so fun! And try to explain how it makes you feel when you are exposed, I don’t think some people have any idea!
When your bosses buy everyone a “special treat” to say thank you for all the hard work everyone is doing and you realize they bought 4 boxes of donuts and not a single one of them are gluten free. Also, when your bosses realize they just offered mentioned gluten filled donuts to someone who has celiacs and they say, “Sorry.” A total bummer.
So tired of hearing friends & family tell me there’s no difference between gluten-free & organic foods, who get angry with me when I decline to eat what they’re offering, once I’ve asked to see the item’s packaging & clearly see the words: Product Contains Wheat & Wheat Products.
At conferences, when the gluten free options are also the vegetarian options…
I won’t touch anything with Xanthan gum. Evil stuff.
I’ve found the Paleo breads a better option the gluten free breads. At least they aren’t trying to look like white bread.
Kimberly I hear you! Since being officially diagnosed with Celiac I stay away from family dinners or events relatives have scheduled at banquet centers, to avoid being asked if I brought myself something to eat, because (1) They don’t know how to cook gluten free, or (2) Hear event center managers tell me they can’t guarantee my sit-down meal won’t get cross-contaminated in the kitchen, or their buffets don’t offer any gluten free options. Taking my own food to a picnic, or lunch at a friend’s home isn’t a problem, but being expected to bring a hot meal to formal wedding, graduation or anniversary receptions is.
I love Canyon Bake House Gluten Free Mountain White Bread.
I have two main pre peeves when it comes to my intolerances and other people. The first is being told that there’s saids when I ask for a gluten free option. This happens most often at camps, retreats, and with older adults. Since when is eating buffet style iceberg lettuce with olive oil a sustainable option for a week of meals? Luckily, kitchen staff are far more accommodating than event planners and I’ve learned to call the camp ahead of time and explain my restrictions.
The second frustration – if I never hear another person tell me to eat a sandwich to gain weight, it’ll be too soon. This goes hand in hand with “I wish I couldn’t eat XYZ! I’d be skinny like you!” If only people understood the variety of nutrition and weight challenges that can come with having food intolerances.
Trader Joe’s has EXCELENT (my favorite and best I’ve had) gluten free bread and bagels!!! Highly recommend!!!
I am not only on a gluten free side, but also allergic to whey and casein found in dairies, legumes, yeast, hair dye, nsaids and macrolide antibiotics. So imagine how much is difficult for me to explain. I am an O positive for blood group and a non secretor. Recently I read the book of Dr Damo Eat right for your type and no wonder I have all these allergies, there are only few people in the world with this condition.
People telling me i can eat a little gluten. it won’t kill me, stop making a fuss. I finally have a good comeback. you wouldn’t feed me a little arsenic, would you? Well with my health issues gluten is the same level of toxic to me. It’s not a fad folks, it’s a life or death to some of us! I know, I’m talking to the choir here.
Great article! I can relate to all of that. I was diagnosed in 2010. I STILL spend a ridiculous amount of time grocery shopping. 2 of my favorite breads are Canyonhouse Bakery (freezer section)and Schar (on the shelves). Udi’s isn’t too bad either.
I enjoyed your article and thank you for pointing out the struggles of being GF. My celiac diagnosis came three years ago as evidenced by MC3 lesions and virtually no villi left in my digestive tract. Restoring my health has been a huge learning curve and I agree with everything you wrote. I have been very frustrated with the GF prepackaged and boxed versions of items. The sugar content (sugars being notoriously bad for you) is ridiculousy high as well as pricing. And learning to bake and cook GF has been an adventure in itself. Articles like yours help so much in its support and offering a sense a community with a common bond.
Yeah, having food allergies makes it really difficult to eat out. Every single sentiment said in this blog plagues my daily socializing existence. I have allergies to not only gluten, but yeast, dairy and egg as well. It’s a good thing I love to cook and have done well for myself and my children, but I would really love to eat out once in a while without all the necessary precautions and education process. Sigh….
Wow he’s so rude!!
On my first venture out to a local pub after being disgnosed as celiac, I asked the chef if there was anything I could eat, he replied ” nice patch of grass outside” !.
I have found Pure Knead gluten free bread. I really like it. It is soft white bread. It doesn’t contain the top 8 allergens.
So true! All of it!
I am gluten AND dairy intolerant. I don’t know how many people have told me I can’t eat something because there’s eggs in it!
On a positive note, we just took a trip to Disneyland and ate at the Blue Bayou restaurant where almost the entire menu was gluten free and they made delicious gluten free rolls as well!
I have been gf for about 6 months…its a sensitivity . Non celiac.. my body just cant handle the gluten along with dairy free…the combination is tough but getting to figure things out slowly.. when I first started grocery shopping I was sticker shocked and felt victimized by something that wasn’t my choice in life… thankfully there is an Aldis near me and it offers me some wonderful gf products. Wegmans is my main go to as the wegman products indicate on their labels gf or Lf. Still need to readjustto be safe. The biggest downfall I have to drive 45 minutes to nearest store an all day event
. my recent shocker.. WEIGHT WATCHERS! Do you know they offer very little guidance and knowledge of GF! And get this. Anything you eat that is GF is more points than non! Say what?! The counselor comment. But there are so many zero point items you can have… it’s like you mentioned. Hey there’s a salad!
Thanks for your article and all others for your comments. It has helped me feel I am not alone and the guidance is so very helpful.
Thank you! So true. I live at countryside but people here are a bit harsh when you are glutenfree. No respect at all.
Hi I am also gluten free and soy free I have so many times I can’t go out with my husband and friends to a lunch or dinner it is so exhausting to just expand to a waitress about your problem they look at u as though you fall off a truck, great in put on so many people as me I can’t have eggs that came from a chicken that was in a cage all day I have to have organic eggs and grass fed meat,so the gluten free breads and etc. are out for me because it’s all made with regular eggs sad they could use organic or even cage free eggs but restaurants have a excuse saying it’s to expensive to buy the better eggs,I don’t agree on that if the restaurant is very well known they are doing good in service and go a little out of there way for people like me. I’m used to it I’ve been like this for 8 years, thx Cindy from Colorado,Colorado Springs.
If you ever visit the Netherlands you should buy gluten-free bread from Albert Heijn. It’s delicious!
Unfortunately it’s always sold out because people who wants to lose weight buy it a lot… But still, if you can get one, buy one. It’s just as great as wheat bread. Lactose- and gluten-free (:
When someone says “the restaurant has vegetables you can eat” while they are chowing down on fried chicken 😏
Oh my Gosh! I thought I was all alone. I’m so thankful to see my feelings validated! When I was in Italy I never had the problem like I have in America. The restaurants take celiacs very seriously. The waitstaff all know what it is, and can tell you what on the menu has gluten in it. Of course I only went to places that have gluten free menus. One restaurant only serves gluten free food on white dishes (no mix ups), and another cleared my place setting and gave me a clean one after I told them I was celiacs. It was so nice to be treated with understanding and respect for my food issues 🙂
I’ve been eating GF for 21 years and boy have things come a long way. I don’t have much disappointment any more. The two events that stick out the most are going out on a date to a 5 star restaurant where they assured me they could accommodate me and as soon as dinner was done I went to the restroom where everything came right through. Not a good situation. The other was when I went to the bakery of a grocery store and asked if they had anything GF. She asked what’s that? I told her it’s the protein in the wheat. She said, oh don’t worry these items are white, not wheat. 😵
Trader Joes GF bread!
Kim and Jake have an awesome peasant loaf.
Against the grain has the best frozen gluten free pizza, bagels, (yes, I said bagels) and rosemary rolls. They also have a great cookbook.
The best place I have traveled to, that was easy to eat in, was New Zealand.
Thank you for sharing. I have this chronic disease endometriosis.Cysts in my ovary.Its hard all those things we need to search for us to know more not to rely all the information from our Dr.I need to read more about it.God bless!
Or when you can’t use something like shampoo because that says it gluten in it
That’s awful but I’m not surprised. Many hospitals serve junk food to sick people. A real shame indeed.
I’m a nurse and work in a hospital which you would think they would have gluten free bread, soup, or health gluten free options to staff NO only junk food items cookies chips etc. VERY frustrating !!!
Well, that sure hit home. Diagnosed with celiac disease last Christmas and for a year now, I thought I was eating gluten free. I was eating peanuts and I’d checked the label some time back but I checked it again… now it says ‘may contain wheat’. I’m disgusted with myself for not checking it everytime before I ate the peanuts but there it is. Something you’ve relied upon to be g.f. and it isn’t and I feel like I’ve betrayed myself. But it sure explains why I feel so lousy most of the time. Thanks for your very informative list.
Hubby and I haven’t gone out for dinner for a long time – not since we discovered the gf can mean gluten friendly instead of gluten free.
Eat at home and then go to your gatherings. I know it sucks but what’s more important?? Being safe from gluten or being popular?? Its not rocket science. My husband and I do this all the time. We can nibble on veggies and nobody asks us a million questions. I don’t expect anyone to cater to me or offer me selections for my choice.
I am also gluten free after a gastric bypass 9 years ago. I also have a nephew that has more food allergies that I can count. He started me down this path. Little did I know he was preparing me for this road. I tried my hand at baking for the small group of gf people in my town but the stigma wouldn’t let my business get off the ground. I am on the kitchen committee at my church so I am trying to educate where I can. We set up a GF side and a regular side so we keep the cross contamination down. I do most of the gluten free preparation. I also prep for anything at work There are 3 of us at work that are gf so we usually split the menu to bring what we can eat. As for eating out, that is still a nightmare. I was looking at the applebees gr menu to find 6 errors on their first page. I went without that night. I get tired of fighting but the I remember my nephew and I realize there are others out there worse than me. I will keep fighting for them.
I hate when I ask if there is a gluten free menu or items and get asked if it’s a preference or allergy. Why should I have to disclose my personal information? Either you can accommodate my request or not.
Hello! I’m not sure if anyone has left this in the comments yet, but my favourite store bought gluten free bread is Little Northern Bakehouse Delicious Gluten Free. It’s fantastic! It doesn’t have any weird aftertaste and I honestly forget I am eating gluten free bread. I buy mine at Costco! Cheers!
Try having to be gluten free and having multiple food allergies. I would love to pick up a gluten free granola bar and go, but no- I have to check that there are no nuts, nut butters, banana products, or coconut either…..
Oh goodness!!
I love when you order a sandwich at arbies & there is less meat & cheese than 1/2 of a sandwich contains. So tired of people saying just order it regular & take the bread off & having a boss that insists on trying to force you to eat donuts & see the rolls he brings to work as his “good deed”. Even going so far as to say they are gluten free just to try and justify his lack of caring.
I took the time to explain my need for a gluten free meal to the waitress. She seemed knowledgeable about celiac disease and what I could have on their menu but when my meal came it had a wonton shoved into the side of the stir fry. “That’s the only thing with gluten in it on the plate”, she said.
My husband was diagnosed with celiac the end of March this year. We had booked a 21 day ocean cruise with Viking before his diagnosis. I let the cruise line know ahead of time. Every evening he received a menu that he would indicate what he wanted to eat the next day. It listed that he was severe celiac. They went out of their way to make sure he did not receive anything with gluten.
You’re wrong….I do get it entirely. You’re doing what you accuse others of….assuming.
I have gallbladder bladder disease and can’t eat fat. You’ll be amazed at what contains fat….and where manufacturers sneak it!
I’ve been looked after like I’m faddy or fussy on purpose. “.but you’re so slim, why the diet” then they’re offended when you explain that you are thin because your illness means you can’t eat fat!
The classic…salad dressing…” It’s olive oil, it’s healthy”….!!!!!! No, it’s oil, I will die from the pain it will cause me!
Eating out…nightmare. People who choose a “weird” diet and say… “you’d understand”…no, I wouldn’t, if i could eat whatever was put in front of me, I wouldn’t choose to be “weird”!
I get you’re frustration, I really do, but you are not the only “weirdos” in this world that suffer from other people’s lack of understanding or manufacturers meddling. You need to adjust your attitude to yourselves and others before you end up speaking like those you criticize.
Inclusive, educational, caring exchanges to move the world forward not finger pointing rants.
❤
So much yes! It’s been a little less than 3 years for me and the doctors dont know why I cant handle it anymore. I’ve had relatives say they wont change their cooking (using cornstarch instead of flour for gravy) for me so at holidays I eat beforehand or just have Turkey and salad but ive found even salad dressings aren’t safe. If anyone ever is in Oregon go to Philomath Oregon. There is a restaurant (Eats and Treats) there that is exclusively celiac friendly. Your kid cant even bring in a snack unless its marked certified gluten free! It’s amazing being able to order anything off their menu!
It has been 10 1/2 years since I was diagnosed celiac. Since then I have added dairy to the list of things I cannot and will not eat. I agree with and thank you for putting into words the frustration felt by someone who has an allergy and will be sick if gluten is ingested, yet faces assumptions by someone whose exposure has been to someone fadding. But, may I say the quality of life I have found since going GF and dairy free is SO significant that whatever frustrations I may face, I would never go back. It is actually one of the best things that could have happened to me, because on a daily basis I must choose healthy foods and cannot slip into a food rut. Sort of -lol!
I happily educate food servers I come across who do not know about GF prep and serving. It never ends, but the variety of products has exponentially improved and I am blessed by friends who make special efforts for me -so sweet, co-workers who really do try to include me and a church community who does the same for those affected. It is extra work, but worth it and our attitude teaches by far more effectively than anything else we can do.
I have been gluten free for over 25 years. Although there are many more options open to us there are still many challenges. My eating habits have changed drastically over the last few years. Instead of scouring all of the natural/specialty groceries and pay double or triple the price I often choose to stay with naturally GF options. I eat only GF proteins such as poultry, fish, eggs, and beef (occasionally). Lots of fresh veggies and fruit are always on the menu. I will occasionally allow myself to splurge on a gluten free treat but am very choosy and don’t spend more than I am comfortable with. I very rarely eat out, including at friend’s or relatives homes. I feel so much better preparing my own meals knowing for certain that they are safe. To sum it all up my tip to all of those who have no choice but to be GF, be willing to take care of yourself and protect your health even if it requires more work and planning.
Thank you for writing this. My sentiments exactly.
In San Antonio, Texas there are two restaurants that cater to CD and GS customers. 5 Points Local is COMPLETELY gluten free and delish! The Cove is also popular among the gluten free community. In Boerne, Texas (which is about 20-30 minutes outside of San Antonio) there is a new place called Boerne Soup Kitchen and it is completely gluten free as well – their food is amazing. Hoping and praying more people start realizing the importance of establishing restaurants that are completely gluten free. BTW – the restaurants above are always full of customers…so what does THAT tell you?
All of the above!
Recent experiences to add. Being in the hospital but not yet admitted “Here, I brought you a turkey sandwich” and from a doctor “I brought you some graham crackers since you haven’t eaten in 14 hours”. I’m sorry but, why?! Also, had to spend 30 hours in the hospital before my son was born and even though I was admitted, which meant I should be able to order food, there were no rooms so all I could eat was jello or yogurt, again, they offered me a sandwich. At least my mom was able to bring me a gluten free meal and had even baked me some cake :). I now have a host of dietary restrictions and I get the “What can you eat?” all the time. I keep telling people “everything else”. There are so many foods that most people don’t think about for daily consumption, it’s crazy. I was only diagnosed 3 years ago and cross contamination doesn’t cause me any physical effects but, I recently went to an italien restaurant and ordered gluten free pasta and they assured me what they brought me was gluten free but, one bite in and I knew it wasn’t. They gave mine to someone else at our table so, I was able to switch but, the abdominal and lymph node pain for the next two weeks was awful. I’ve been trying to be more cautious about cross contamination since my doctor said it still attacks your lymphatic system and increases your risk for lymphoma. I have gastroparesis caused by the celiac damage and can’t eat lettuce, people look at me like I’m crazy when I order a salad without lettuce. Also, no citrus, citric acid, apples, or pectin. Now, I have to cut avocado at restaurants since it is always treated with citric acid. I could go on but, will refrain from unloading on you.
Thanks for your post, I wish I could print it and give it to everyone I come in contact with!
Celiac disease 20 yrs and I still have all the mentioned problems.
Dining out – almost finished with your salad (because that’s all you could order) then finding a bit if a crouton.
Having to explain everything when dining out and giving details about what is acceptable and what isn’t k and you can tell they don’t care).
When sending back a salad that has croutons explaining that they can’t just take the croutons off and re-serve the same salad or I will get sick.
Starving at events or friend’s and family’s house because there is nothing for you to eat. Having to eat before or after.
Having to watch everyone else eat dessert at friend’s and family’s house because it was too hard for them to make a gluten free dessert. Seriously, dont invite me if you can’t be bothered to have food I can eat!
Having to explain to someone why you can’t eat their food so they dont think your just being rude then watch them roll their eyes.
Having someone ask you to explain then watch them become annoyed at your explanation.
I go out of my way to accommodate someone if I invite them to my home.
Spending Hours at the grocery store because I have to read ALL the ingredients.
I could go on and on but I’ll stop for now… I’m sure everyone feels the same frustrations.
I loved all the comments. I’ve been gluten-intolerant for several years. My meals can get tricky as I have found that I’m unable to eat some products that are classed as safe and may be fine for others. My diet can get a bit challenging.
I ate there in Utah. So good. Hoping it comes to Denver!!
If anyone has a CoreLife Eatery near them the whole menu in gluten free. There are 50 locations across the US now with many more to open. Definitely check it out!
Thanks Kevin. Family can definitely be challenging!!
Almost 5 yrs GF. Family is the worst and they should really be more understanding and supportive of this than anyone else. I have found it is easier just to say that I don’t like things that contain gluten rather than say I can’t eat it. People don’t question or say stupid things as they can relate to not liking something but no one really understands the struggle of being gluten free. I get some strange looks when I say I don’t like pizza, cake and all the other goodies but it’s easier than having to explain and deal with the questions and criticism. Stay strong my GF friends!
let’s not forget family members who have very little knowledge or who dont feel bad glutenizing your kitchen or theirs while you’re trying very hard to avoid it and are still new to it and have your weaknesses….Also the spouse who thinks you’re just making like difficult on purpose for everyone and thinks you’re batshit crazy for avoiding gluten despite not getting a diagnosis from a celiac specialist but still knowing you feel absolutely horrible when eating gluten stuff not to mention absolutely sluggish and let’s not forget the time gluten ataxia hit you and you couldn’t speak or move without seeming like you were dying of a stroke.
Thank you Shelia. I have a handful of GF friends and they are the best! We have a support group on Facebook if you’d like to join us there. https://www.facebook.com/groups/GlutenFreeDietSupport/
Reading these comments made me feel support. Knowing that there are people out there who understand all that I grow through is beautiful. In the other it is saddening because it it lonely, very lonely. I’m 12 years in. I wish there were Gluten free social/ support groups. Sigh
Agree. Thank you for sharing!! It’s so funny when people seemed stumped about what we can eat.
I have two grown up daughters who are celiac! One is also soy free dairy free and corn free , which causes most people to say what does she eat???? Well anything that is fresh,lovingly and thoughtfully prepared in careful kitchen! ahh that careful kitchen… I have found that recipes that are easily adapted simply have less flour in them… thank heavens they do not have nut problems… and yet food around the family table is still important and much enjoyed… it just takes vigilance and flexibility.
I bought a capsule from CVS called Gluten Cutter and carry it in my purse always. There have been times that I have eaten something at a restaurant and realize there was gluten present. (I.e. French fries, or croutons etc.). I would take a capsule immediately and have NO problem afterwards. I have lived with lactose intolerance for 20 years, (gluten intolerance only 6 years) and realize the taking Lactaid tablets puts enzymes in my gut that it needs and allows me to have a little cheese or yogurt. (But I never seem to do well with ice cream or regular milk or pudding.) Likewise, I do not totally fall apart from a gluten error if I take the Gluten Cutter enzyme. I have never eaten a small helping of gluten on purpose, tho. Just use the enzyme if I discover I made a mistake.
Thank you for sharing. I hate that people don’t take gluten sensitivity as serious too. Grrrr!
My daughter and I love the bread at Trader Joe’s but we are only gluten sensitive and I can’t recommend it for Celiacs.
Tate’s makes the best cookies though!
Our pet peeve is people who think because we are gluten sensitive we can “ eat a bite”
I’ve ended up in ER and on morphine after a 17 hour stomach ache because the hostess failed to tell me the corn chips were multi grain.
Thank you for sharing Linda. What an ordeal!!
ALL of these! So insightful, thanks. I’ve been gf for many years, and like many of the above comments, things are easier now that there are more products available in stores and restaurants. I also find the Udi’s white sandwich bread to be the best- but if you can even find the loaves with full sized slices, it’s 10.00 a loaf! I’m delving into gluten free baking. Anyway…
Friday after a very disappointing Thanksgiving dinner at a relatives home (I was supposed to bring the gf options I wanted as my contribution-but I hadn’t been feeling well enough to expend the energy) my husband and I were at a snobby restaurant so I could order something I could eat but didn’t have to make myself. I had been there before, but they’d changed their menu. There was no gf menu, no gf options indicated on the regular menu. (Unusual in this area for a highly rated establishment) When I asked the waiter his opinion, he said said the safest option was an omelet. An omelet? An omelet was not what I had in mind when I had basically missed Thanksgiving dinner. Well, I basically missed that dinner as well.
Thanks for sharing Karen.
I found out just over a year ago that I am allergic to wheat and eggs. So a lot of the gluten free things are fine and everyone gets so excited to point out to me that ‘look you can eat this! its gluten free!’ yea but it has eggs in it 🙁 There’s others who point out EVERYTHING thats gluten free just because it says so on the label – Look you can eat this cheese stick because it says its gluten free. I have found however that i can eat duck eggs without issue. Granted they are super hard to find and much more expensive but at least its an option. Apparently a lot of people with egg allergy are only allergic to chicken eggs.. Who knew!
Thanks for the tip. I like Three Bakers.
I was asked to do a GF diet for health reasons. I’m not in danger by eating gluten but lost a ton of weight by going GF and feel a lot healthier. However, my cousin is GF her whole life and turned me on the the best GF bread. It’s Three Bakers 7 Ancient Grains whole grain bread. It’s not white bread, etc. but it is the tastiest bread. They make other GF breads as well. Want a real change in bread, you got to try this. In the freezer section
Thank you for sharing. Hang on to that awesome wife of yours!!
One of the biggest issues is living in a family that loves to eat. My wife has been so supportive and has managed to adapt so many things to be gluten free and they are amazing! But everyone else just complains because “It tastes different.” “It’s not as good as so-and-so’s.” Then being told I’m being rude for not eating the turkey that my mother “slaved away for hours to cook” because she baked the stuffing in it? It sometimes just feels like too much to handle. To top it off I also am allergic to red meat so that just adds a whole new layer to the drama…
Oh that is no fun Irene. I’m so sorry you had to deal with that.
I’m 76 yrs. old and was diagnosed at 62. I make my own flours bake my bread etc…….If you don’t make your own food you’re looking for trouble. We were invited to my husband’s sister’s home to celebrate his mother’s 100th birthday. I decide to go just because his sister said she had made me a GF meal and not to worry. Mealtime came along and she set a plate of meatloaf, mashed potatoes and gravy. Just before tasting the meatloaf I asked what she put in it and she proudly said “You don’t need to worry there’s no flour but I put crackers just to hold it together”. Drats…….Had to settle with potato chips. Didn’t have the heart to ask what she put in the gravy or salad dressing. I was through with surprises and felt I was ruining my mother in law’s birthday so I shut up.
I enjoy Schar too. Thanks for sharing!!
7.) The best GF Bread I’ve found is Schar Artisan Bread. It’s not in the freezer section and last longer than glutened bread.
Great example of why you must be smarter than your servers and be weary of what they tell you if it doesn’t sound right.
When I first became gluten free when I was 16 or 17 (about 5 or 6 years ago) I went out to dinner with my parents to a local Italian restaurant. Being new to food sensitivities I was still learning what I could eat and I felt weird asking the waitress about gluten free options, so my mom asked. The waitress was unsure so she went to ask the chef and came back with the only option of pizza. Not gluten free pizza, regular pizza. I ended up going with a plain salad with nothing but a lemon and some olive oil. So glad I got over feeling like I was inconveniencing my waitress by asking for gluten options or an allergen menu.
Thanks for chiming in Sharon. ❤️
I loved reading your article! It hits home on so many levels. Work functions, isolation, “I was just going to put a little wheat in it” says my MIL, restaurants that pick out the croutons, dry meat at restaurants because all the sauces contain gluten, “there’s fruit”, ugh. I mean, how filling are salads and fruit?! The struggle is real! I wish more non-gf people would read it and hopefully understand. I agree with others about the availability of items now. I was diagnosed almost 15 years ago and the bread choices, for example, are so much better now. Canyon Bakehouse and Three Bakers are 2 of my favorites. I get my pizza at Blaze Pizza here in California. They have a separate machine to flatten the dough, glove change, separate sauce, and 1 side of the oven is designated GF. Never been sick and I love their pizza. I do wish we could get thicker crust pizza like the ‘other people’ get. I am thankful for all of the options of bars, granola or other, that we can carry for the times we can’t eat anything.
Thank you Liz!! 🙂
Say it again for the people in the back!!!! It’s so nice to feel SO understood. I have 6 food allergies and gluten is one of them. I spend more time ordering my food than eating it the first time I go somewhere. I remember going to my first gluten free, nut free, vegan bakery and restaurant in Portland, Oregon. I was so overwhelmed with options and caring people that I cried. It was amazing. Thank you for being real and sharing a glimpse of what it’s like to live our lives! You better believe I shared this on Facebook! ?
http://www.nomorebellyaching.com/phone/index.html
Best bread I’ve had yet! They make vegan too if you are allergic to eggs and wheat!
Thank you for sharing. I think I need to add to this list!
Good one!
When ppl ask, so have you always been allergic to gluten? Because I used to eat it and be “fine” but now I can’t. Also when when other gf friends “cheat” once in a while. Um yeah can’t do that. I also had a boss once who made fun of me for being gluten free. The list could go on.
People always thinking I’m vegetarian.
That’s amazing. Now i need to get to Greece for the fries! ? ?
My 15yo son and I, both celiacs, went to Greece last summer. We always asked whether the restaurants used the same oil to fry their french fries and other foods, as well. At first, we just asked because that’s what we always do. After a while, we asked because the response was universally AWESOME:
After the initial, utter confusion aka disbelief at the very concept, the staff always said, “of COURSE we don’t! Why would you do that? It would RUIN the french fries!”
The French fries in Greece were all perfect. The worst ones there were as good as the best ones here in the U.S. They should rename them “Greek fries.”
Thank you for sharing your celiac mama struggle. So true!
Yes! Yes to all of this! I don’t have celiac disease, but a year ago two of my young kids (9 & 4) were diagnosed with celiac disease. Birthday and class parties are lots of work! Also, when kids have birthdays and bring cupcakes to share with the class. I almost never know ahead of time so my kids end up being left out. It’s no one’s fault, just a fact of life. They handle is pretty well but they still wish they didn’t have to be gluten-free. Thank you for taking the time to write and share this post!
Yes thank you for sharing Ray!
I have been gluten free for 25 years. I dont have celiac. I was diagnosed as Occupational Intollerance. I have ran into every single one of these issues. It is very frustrating. Even people close to me doubt it’s a real issue….until I get “accidentaly” dosed. When I found out my problem there wasn’t all the products we have today. I found 1cereal I could eat. Rice cakes, rice noodles,…
No flours to chose from. No GF product labeling. No GF choices.
I went vegetarian for many years because of all the issues. Going out to eat back then, salad and only salad.
Is it still tough for us, yes. But, it is a lot better than it was and they are getting better.
Thanks for sharing Anne!
Thanks for sharing. Lol!
For bread, I love Canyon Bakehouse. Their focaccia bread is really good! I’d skip their English muffins, though.
Honestly, I’m happy when my digestion is good enough that I can handle any grains. Being simply gluten free beats paleo or any other healing or elimination diet!
Glad to have found these great comments, Been GF for ten years and can identify with EVERYTHING said. Biggest peeve is Italian restaurants not offering GF pasta (use it at home all the time). Carrabas makes a big deal of being GF, by this they mean salads – or restaurants that tout a GF menu (which is not the same as a GF meal) – meaning they have a plain green lettuce and tomato salad – sans dressing – maybe a dry grilled piece of fish. Wait staff and grocery clerks routinely respond to questions about GF with “Oh, I don’t know anything about that.” Would an auto mechanic get by with answering this way if you asked about an oil change or a battery? GRRRRR. And I was excited when major pizza places began offering GF pizza assuming they were actually making a GF crust – WRONG – just some kind of premade dry GF crust I can purchase at some stores. (I will say Schars crust is pretty good – but have to order it on line because grocery here doesn’t carry it or only have limited supply once in a while). On a brighter note I love to cook and feel so incredibly well on GF eating – but generally avoid church buffets, eating out in restaurants or accepting invitations. Get tired of explaining and trying to not be annoying. I am an 83 year old Southern lady and that’s just “tacky” to call so much attention to yourself. Patricia
THIS!!! 100%!!!
I have managed to find an amazing GF bread. Its Udi’s white sandwich bread and it’s uh-mazing!!
How about someone discovering you’re GF and decide to “join” you by pointing out that they don’t eat bread either…
The struggle is real! I’m with you…
You are amazing. I wish you catered in Denver!! It’s awesome that you educate your staff. Every bit helps!
Yes I love many of those products too. Schar is awesome! Thank you for all the recommendations!!!
I’ll look for it!
It can be isolating for sure. Thanks for sharing.
I love when people invite me and my celiac husband to go to a restaurant they want to go to and I say I have to see if they have gluten free options and they proceed to try to convince me that they have salads. I’m like my husband doesn’t want to eat just a salad. And what about the dressings?? People just don’t get it. I also love when we are invited to someone’s home and they say everything here is gluten free. Oh great what seasonings did you use? Soy sauce, seasoning packet etc. Ugh. We usually eat before we go. I inform anyone cooking for us a few GF offenders and to ask me if unsure of ingredients being GF. But there are a bunch of assumers out there. I feel bad because they think it’s ridiculous to be so rigid but we have to be! We are not trying to be divas!! Thanks for the post atleast we are not alone.
Celiac for 11 years now… and it is SOOOO isolating! Once folks find out about my dietary restrictions, the social invites dry up like water in the desert. On those occasions when I do go out with a group, I’m always the one who has to choose the restaurant because I’m the one with the “issues”. I haven’t been to a church social in years because what’s the point, when I can’t eat a single thing there? And then there’s the lack of GF communion wafers — one church we visited offered matzoh crackers, thinking that because they were unleavened, they were GF! I could go on, but I’d be preaching to the choir…..
Franz has the best gluten free bread, hands down (and hamburger and hot dog buns). And you can buy it from the shelf, instead of having to go to the refrigerated/frozen section. It’s sold at most large grocery stores in Oregon and Washington, but can also be purchased on Amazon or the Franz website.
Schar makes several gluten-free products that are quite good. Their bread, pizza crust, cookies..are awesome. I love Schar products. Udi’s makes great frozen lasagna and the best double chocolate muffins I’ve ever had. Katz has several wonderful products like donuts, pies, cupcakes. Betty Crocker gluten free cake mix is by far the best.. you can’t tell they are gluten free. WOW cookies are so good. I thought thats where they came up with their name cause it was literally the first word that I said after trying one of their cookies, but it really stands for With Out Wheat. I have to say that I’m so pleased that there are so many more gluten free products available now than when I first started on my GF path. I hope you’re able to try some of these products..you won’t be disappointed.
I ‘m a Banquet Chef and just so happens am gluten free. I do a lot of catering for weddings, parties and I was surprised how many people in my line of work didn’t understand what being gluten free meant. I was finding myself having to always explain to them that it’s an allergy just like not being able to eat peanuts or dairy and it’s not a choice like being a vegetarian or a vegan. I think cross-contaimination is the biggest problem when it comes to eating out. It’s one thing to provide GF options, but taking the proper steps to guarentee that it is 100%GF is the important thing.. people forget and use the same knife or cutting board and that’s not acceptable. I made it a priority in my kitchen to take all allergies seriously and also to provide my guests with a full meal from salad to dessert that was made especially for them whether they were GF, dairy-free, soy-free,etc. and made sure it was compatable to what other guest had not just pasta or a pc of grilled chicken but a whole meal that was really tasty. I actually had quite a few guest come back to the kitchen and not only thank me but tell me how much they enjoyed the meal, how much they appreciated that I did that for them. Yes, it was my job, but it was more than that for me. Seeing them enjoying themselves, stress-free and feeling normal for a night made my job so much more satifying.
It took a while for management to understand where I was coming from, but in time all gluten-free food was labeled for every event and every staff member from cooks to busboys had the proper allergen training. I just wish more companies did the same.
Reading all labels looking for gluten, corn, potatoes, soy, artificial sweeteners, dairy and a few other things – basically can’t buy premade bread, cakes, cookies, and quite limited all across the board when grocery shopping. I eat well at home because I’m making everything, and usually bring my own food whenever we visit somewhere. When we travel, restaurants are quite challenging – salad and grilled chicken all too often the only (iffy) choice. “Cheating” with gluten, potatoes, corn, dairy etc is so not worth the ensuing pain. It’s just not an option and definitely not being picky (because I really do like all these foods I can no longer enjoy). Wish more people understood. Sorry for the long vent.
Thank you for sharing Rosyjo!
Amen! So true! I am dairy free too so people will tell me when something has egg in it….but egg is not dairy….just in the same aisle at the grocery store? I like Franz bakery gluten free bread. I started this journey around 20 years ago and in spite of all there are options–used to be only expensive cardboard frozen rice bread. So I gave up bread. Now there are good options and variety–I am starting to have things that I thought I had to give up forever–in the allergy free version.
Hi Tara: Hang in there. It does get easier with time. Did your son get tested for celiac disease? It’s important to get tested before going GF. Good luck!
I’m just starting to learn the ropes my 5 year olds doctor just informed us that not only does she need to continue being dairy free but we need to cut gluten now also. I’m still pretty lost on what to cook for her/us. Her older brother is not very happy that he can no longer have some of his favorite foods?
Thanks April!
Glutino offers good sandwhich bread. Udi’s makes good breakfast baked goods. Natures Path makes good waffles. ?
Thanks Dianna. It gets easier with time but always a challenge.
This is great! I have rheumatoid arthritis and have been gluten free for six months now and I thought it would be alot easier than it is. I have adjusted at home but I never know what to expect when I go to restaurants or parties. I have learned to always keep snacks on hand just in case. Thanks so much for the tips.
That’s a great idea. Clever parenting love it!! BTW Trader Joe’s has beautiful GF cupcakes if you’re near one.
I have those same trust issues! Someone made a GF brownie mix for me and then said she just added a little extra flour bc the high altitude instructions called for it. Ug!
We have 3 kiddos with Celiac Disease. When they were young, I would make sure they had the best looking GF cupcake to take to birthday parties. They would feel very special when someone would ask them where they got that cupcake because they wanted one, too.
The most difficult for me is when a friend or family member will make something “just for you” claiming it’s “gluten free” and when you ask what’s in it exactly you realize there IS gluten in it but they just don’t fully understand what gluten is ? or they use the same grill or utensils to cook it. It does make me feel bad because they somewhat tried to accommodate but I’m just not eating that if I don’t know where it’s been. I’d rather people just not try at all than to get my hopes up like that #GFtrustissues lol ?
I hear ya! I hate when people tell me there’s a salad for you. Ug!!
Salad. Every event that instead that is hosted (especially by my work) or rerestaurants my in-laws pick out they excuse the choices by saying “There’s a salad!” I like salad probably a little more than most people but I’m also not a rabbit and would like to be able to eat without being told I should feel grateful that there’s one dish I can eat. My mother-in-law is still convinced that I’m just “picky” since she’s known me since before my body started trying to kill me for eating gluten. -.-
Thanks Sarah! Great info. I like Canyon Bakehouse and Uncle Maddios too. We have it in Denver now too.
Thank you for your comment Rachelle. I’m glad it resonated with you.
I have found Canyon Bread to be the best gluten-free option. They have sandwich bread, bagels, hot dog buns, and hamburger buns. Also if you live in Marietta, Ga Uncle Maddie’s Pizza Joint has Gluten-free pizza and they change gloves, wipe off the counters and use a separate sauce container…. and it’s really good pizza!
Your story resonates ! It already makes you feel very isolated and somehow not worthy of consideration etc which is appalling for the self esteem. The fight ito remain well and healthy s indeed very real. We can not compromise and we cannot allow people to put us in situations where we are made to feel like nutcases or pests just for wanting to keep healthy.
Thanks for your comment. Glad you can relate too!
All of these! I’ve been GF for 16 years. I love when people say, “Can’t you just eat a little?” I answer, “Can you eat just a little rat poison?” The worst for me is restaurants who swear something is GF and an hour later, my body is in horrible purge mode … “all guns blazing” … it is SO not pretty or fun!
Thanks Devin! Yes we have Uncle Maddios in Denver and I’ve had good experiences there too!
I agree with all of these and then some! Celiac is a very lonely and isolating illness. I tried Dominos when they first launched their gf pizza and got sick of course. I’ve also tried a couple of high end pizza places with the same result. 🙁
Uncle Maddio’s is a chain pizza restaurant that prepares your gf pizza in front of you. They wash down all surfaces, change their gloves and even keep toppings in a separate cooler to avoid cross contamination. I’ve never gotten sick there and the “Steak and Blue” is awesome. Hopefully there is one in your area.
Thanks Heather! I appreciate your comments!!
I agree with ALL of this. I have been gluten free for 17 years. Yes it is a whole lot easier now to go to the grocery stores and buy gf bread then make bread every week.
Why do company’s reward the employees with food? Never allergy related items.
To work hard to get vacation and go away on a trip and have been glutened at a place that had a gf menu. Breakfasts are the worst!
All we want is to be normal like everyone else not worry if I will get sick.
Thanks for sharing the same issues we all feel.
Or when you go into a cafe etc and they only have cake gluten free and you are not a big fan of cake but you are made to feel like you should be grateful that they have a gluten free option and whats wrong with you !!!!
The Pappa Murphys in my town is the only pizza joint I feel comfortable eating at. They have 1 person who will make your GF pizza. That person changes their gloves and uses a marked tray to put your pizza together. I have not gotten sick once. :o)
Thank you for sharing Eva. I hate when restaurants get it wrong but each time it goes wrong a new server gets educated by us! I love Zoës Kitchen too. What do you like to order there? So many things to choose from, right? 🙂
That’s a very cool story Mary! We will keeping fighting the good fight here at home. Awareness is growing but not where it needs to be by far.
That’s my favorite bread too!
I loved your article, these struggles are so real I too love french fries. ? I is so frustrating when a restaurant doesn’t have a deticated frier! My biggest struggle is when I order a gluten free meal at a restaurant and have taken your advice in educating my server. However, I still get croutons in my salad! Thank you for recommending Zoe’s Kitchen. ? I have not had a problem there.
Why does the US seem to lag behind other countries in awareness of Celiac disease? While visiting New Zealand a couple of years ago, we stopped at a small bar for wine and a nosh. On the menu they had gluten free French Fries, so I asked the server if they were truly gluten free. She asked if I had a sensitivity or Celiac disease and I said yes, I have Celiac. So she said no, they were fried in a shared fryer. Then she came back a minute or two later and said the chef would be happy to bake some truly GF fries for me if we wanted to wait a bit longer. They were such a treat! Things like this happened throughout Australia and New Zealand, but rarely here at home. Hope we can raise awareness, but to many it is just a fad diet. Thanks for listening and understanding!
Favorite bread -Outside the Breadbox baked in Colorado Springs. Yummy white bread andand crust isn’t cardboard. Makes goodgbteadcrumbs, stuffing, french toast and pb&j sandwiches. I’ve also had their dinner rolls and it’s all so good. I get it at natural grocers. It’s also carried at some whole foods markets.
Hi Amy – Thank you for sharing. I, too, hate when companies add gluteny ingredients into foods that should easily be gluten-free. #thestruggleisreal
My 9yo son is GF, so most of what we do at home is GF as well. He really likes Schar bread now, and I admit it seems a lot closer to regular bread than anything else. It’s expensive, but I mostly just use it for his lunch sandwiches and have Aldi’s bread for our day-to-day stuff or when we’re toasting it. Parties and school events involving food are so frustrating, and traveling is always scary because he’s still pretty picky and not every GF-friendly place will work for him. One of my bigger pet peeves is when companies put a seemingly unnecessary gluten ingredient in their food–like wheat flour in fudgesicles, or malt in regular Milky Ways (if other Milky Ways, Snickers, 3 Musketeers are GF, then why not the regular ones?). Or why can’t everything with soy sauce use one of the brands without gluten? My husband and son were traveling and went to some burger place in Canada that had GF buns but their BURGER had gluten. What?!
Totally agree. I want fries not chips! ?
I love the fries comment. So true! I was at Bad Dafdys Burger Bar and although they offer a GF menu the fries are not so they give you a bag of potato chips. Gee thanks I can get those anywhere! I won’t got back because of that and people think I’m being unreasonable as they munch on their fries, tots or onion rings!
As a non GF person, this was SO eye opening. Also, I’m intrigued about the inflammation you mentioned at the beginning.
Terrific post!
I have been Gluten Free for a little over 10 years now. Thankfully, grocery shopping and eating out has improved significantly since then. I literally cried on a regular basis when I first started. Bread has been an amazing improvement; if you can shop at Aldi or Trader Joe’s they have very good choices!
Eating at people’s events is still the worse. If I can’t take my own food, i usually eat before I go or go hungry if I there is nothing I can trust.
Thank you for all your sharing!
Thank you for sharing Cindy. Eating out can be very challenging. I wish there wasn’t such a stigma attached to being GF. I wonder how we can fix that as a community because I feel it too.
Being harassed at work or other functions when they all have food and you can’t eat it. Or there is a gluten free dish but someone cross contaminates it with a spoon from a gluten dish and you say well I can’t eat it now and everyone then says your a neurotic and I won’t use the word they call me but it rhymes with witch. Having eyes rolled at you when you request to be 1st in line at a pitch in so you can take some food before it’s cross contaminated. Having wait staff at restaurants say oh yeah it’s gluten free and half way thru eating your salad you find an onion ring that was dropped into it by mistake in the kitchen and then stirred up into your salad. I say it’s not worth it to go out and it’s not worth trying to go to pitch in dinners. Most people DO NOT care about our celiac disease and most people think it’s a joke! I’ve had celiac disease for 7 years. I just keep to myself and eat at home.
Yes, bringing my own food to events is such a pain too! Thank you for adding it to the list!
Going to an event and always having to bring our own food is a pain , which is why we usually just stay home. It’s isolating and lonely, though.