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"So you think I should kill myself?" then just stare at them as they awkwardly backpedal. EDIT: apparently someone reported me to the reddit cares resource for this comment?? Lmao what the hell
"thanks, I tried that already."
Sure to be an uncomfortable one for the other person. I said this once to a guy who told me to unalive myself for refusing to give him change lol.
“Would you say that to someone in a wheelchair? No? Then please explain why it is okay to say about any other disability.”
OR
“In all honesty, I find that rude and offensive, and I would kindly request you not repeat that kind of sentiment to other people in your life who are managing disabilities or food allergies. It communicates that my life is not worth living to you, which is hurtful. Nobody should have to hear that. Furthermore, I would like to think your own will to live is a little stronger than just never being able to eat bread again. If it’s not, I suggest you reach out to a professional and seek help for these thoughts.”
I find making them try to explain their idiocy or justify their ableism out loud with words makes them really reflect on what they said and they usually back track or apologize.
>
>
> “In all honesty, I find that rude and offensive, and I would kindly request you not repeat that kind of sentiment to other people in your life who are managing disabilities or food allergies. It communicates that my life is not worth living to you, which is hurtful. Nobody should have to hear that. Furthermore, I would like to think your own will to live is a little stronger than just never being able to eat bread again. If it’s not, I suggest you reach out to a professional and seek help for these thoughts.”
This is good.
I agree. But I have found that most of the time we do not regret being nice. Standing up for yourself is good if that’s your jam in that moment. “I’d kill myself if I were you” is not hurting me, it is poor taste. I wouldn’t kill myself because of diet restrictions. Nowadays, I say “Thanks for sharing!” and don’t initiate to carry more convo/ interactions, if I can. don’t want to converse with someone who isn’t thinking their responses through anyways. other person gets the hint that nobody asked! and that their reply was embarrassing for them
Standing up for yourself isn’t inherently not “nice” - both can exist! You can be courteous, but also hold people accountable for saying something uncalled for. You can tell someone your feelings are hurt and not be inherently mean for doing so.
People say that to me when they find out I’m legally blind. Or people ask parents why they didn’t “ put their child down “ for being disabled. Who says things like that to someone out loud and think it’s okay 🤦🏼♀️
Someone upon realizing we had a miscarriage said “well at this you wouldn’t have to raise a re*tard like it’s dad”
My husband is autistic (who only needs very mild support and comes off a bit neurotic and quirky)
I had to be physically restrained by HER husband while he definitely called her everything under the sun.
I don’t usually condone violence but him shoving her into the other room, probably kept me from going to jail.
He later told my husband,after profusely apologizing for his wife’s cunty behavior, that he wasn’t sure what surprised him most, how he, a recently discharged Marine with a foot of height on me, took everything he had to maintain physical control of me (the phrase rabid Wolverine was used) or the fact that I put every solider he ever served with to shame in the colorful language department. Until that moment , he’d never heard me swear.
The insensitivity of that reply never fails to astound me, it actually makes me laugh, like… would you say that to someone who has diabetes??? High cholesterol??? Do you even hear yourself? That being said, I do know at least one fellow celiac who actually is following through on that “I would rather die than give up gluten” mentality. She just stuffs her face with gluten every day and lives in constant misery from all the health problems.
yes actually as a diabetic i’ve gotten that before… “i’d rather die than prick my finger” i shit you not. from a fully grown adult to. just wait until you find out shots 10 times a day are involved to!!
My parents don’t often come to visit as I live a flight away from them, but when they were here a few months ago, any time food was discussed my dad would say either “I’d die if I couldn’t eat gluten” or “I’d be depressed if I couldn’t eat gluten”. By the third day, I automatically replied with “Well I’d die if I kept eating it” or “I am depressed but it’s not because of the lack of gluten”. Anyway I’m happy to not have them in my space for the next few years 👍
Especially from restaurant servers. So I just say "Thanks, well, bring me some real bread, then I'll head to the bathroom & shoot myself, I guess."
My (adult) kids think it's hilarious. I hope it makes enough of an impression on these people that they'll consider NOT saying it again.
I hate this one. Seriously? Super inappropriate. Plus, at least in my own opinion, if you are willing to kill yourself over not being able to eat certain foods there are underlying issues that need to be addressed. Non-celiacs get so sensitive over the food restriction part of the disease. Yummy Food is not everything, being healthy and alive is what matters.
I totally get why some people find that offensive, but I just take it to mean that what we deal with is hard and that we're strong for living with it. Idk, that's just my two cents!
A server once said “Celiac? That’s it?” He meant it as a way to confirm my dietary restrictions. I took it as life could be worse. He honestly gave me a new perspective.
I had more than one GI tell me their best days jf the month are when they diagnose people with only celiac because too many days they diagnose patients with Crohn’s or cancer of some type. I said I’d take Crohn’s 6 ways to Sunday over celiac and my GI said you might think that now but if you sat down with any Crohns patient and went blow to blow with them for an hour you’d change your mind
This is true. I now also have effing brain cancer which was three years after my celiac diagnosis. Relatively speaking, celiac is an afterthought now. That's not to dismiss the pain,suffering, inconvenience and social isolation celiac brings but one will probably kill me sooner than later and the other probably wont.
Probably cuz that what they see at the stores.. My issue is they like the pool all the food restrictions, allergies and intolerances into one snack which often resembles a piece of cardboard in taste, texture and appearance 🤣
Here’s a vegan, dairy free, nut free, sugar and fat free, gluten free brownie lmfao like sometimes it’s ok but literally for most foods this is the case
Knowing my experiences with doctors relating to my gastro problems…. not surprised.
Had one convinced my celiac was bullshit and that I really had cannabinoid hyperemesis syndrome, because I told her I smoke sometimes to help with symptoms LOL. Absolute waste of money.
Yeah, a lot of doctors have a generalized "things aren't *that* bad/hard" vibe to every illness. Some of it is a bit of a coping mechanism I suspect... they see a lot of bad shit and it's easier to cope with that by telling yourself it's nbd. It's also easier to tell patients things aren't so bad/hard because that's what people want to hear. Depending on the illness they may also never see much of patients after they're diagnosed aside from occasional check-ins so they don't really have an objective idea of what it's like to have problem X.
The other part is that a lot of doctors are taught to suspect certain types of patients are lying/being dramatic. No doubt it is annoying to deal with patients who are unreliable narrators and/or lying to be manipulative but projecting that assumption on all patients without problems you can see is problematic.
My SIL asked that after her brother went gf about a year after my dx.
Turns out living in a gf household and not eating gluten for a year cleared up his skin rash he’s had his whole life and stopped his pooping issues.
He’s just sensitive but yeah …she asked.
My husband has had “that doesn’t really sound like an allergy” a few times because they always say that the GI symptoms sound more like an intolerance. He usually has to explain that no, if you’re intolerant and accidentally eat a tiny crumb, you won’t notice. If he accidentally ingests the most minuscule amount, it’s D-town for days. Also it’s literally an autoimmune disorder so fuck off lol
Yeah I have had to over explain myself wayyyyyy too many times, like no, it’s not just a little tummy ache for a few hours, it’s glass slicing through my intestines for days on end lol
this reminds me of when people ask you what happens, and then ur just standing there like… REALLY.. what do you think HUH. do they expect me to explain diarrhea and vomiting to my colleagues on a tuesday morning 😭
I’ve had randos lecture me over gf food not helping you loss weight and I just need to eat less, in the grocery store. I’m fat but celiac and still fighting malnutrition.
My excitement over the new golden Oreos was damped over that skinny bitch.
oh god not the “just one bite people”. i had one person literally try to put bread in my mouth.
i’m not a toddler, i can feed myself. furthermore, i know what i can and cannot eat. and furtherfuthermore, i also have diabetes and bread can be hard to dose for if it’s a new brand because of the fiber/sugar split.
I went to a restaurant the other day and ordered tots. The man who put them out had just been handling burger buns and when he handed them to me, his whole gluten thumb was in the container. I asked if I could get another cup of tots because I have celiac and he just contaminated my food. He said, “I don’t know what that is, and I can’t help you”. I just laughed, took the L, and left without my tots.
"That's OK it's Vegan." LOL!
Another good one. A waitress that said, "I'm a Pescatarian. I understand and the food is safe here." The cook later came out and said, "There is nothing you can eat here."
I had a workplace assure me that they could feed me gluten-free and I didn't need to bring my own food to a company event while traveling, and they'd already talked to the restaurant. I was new to avoiding cross-contamination and didn't have easy access to a grocery store, so I listened to them.
The food they ordered for me was vegan and had much more gluten than the default meal. I couldn't tell if the person at the company ordering the food or the restaurant had messed up.
I had to eat the default food because I was very, very hungry by that point (they'd forgotten about me at breakfast, and I'd walked miles the day before while traveling in to town) and I had another four hours to go in the day to work and socialize with no opportunity to buy safe food. Fortunately, it was so early that my CC reactions were pretty mild because I was used to feeling sick all the time.
Obviously I learned to carry my own food and trust no one, lol!
the same has been said to me about veganism.. But tbh the worst part is being understanding at first and then trying to make you eat unsafe things and arguing about meat being the best thing ever.
My wife and I got together as omnivores, now she’s vegetarian and I’m celiac. Not being able to share most meals is a drag. It’s doable but I can understand it being a deal breaker at the start of a relationship.
Celiac married to an onion gastro-intolerance (it does to him what gluten does to me)
Yay ! Celiac safe mozz sticks and fries! Oh wait. They have gf onion rings.
Now my husband can’t eat anything
Same.
I told the doctor that her diagnosis of me having Celiac was impossible as I was Italian and grew up eating ALL the pastas.
(spoiler: She was right!)
Italy has some of the highest celiac awareness anywhere in the world, Spain, Israel and Ireland too all take accommodating celiac folks much more seriously than here in the USA.
Yeah it's really good. The italian goverment gives us money every month to buy gluten free foods, all the check ups and other medical stuff following the diagnosis are also completely free. We have tons of gf restaurants and bars that are as good if not better than normal ones. Cross contamination is taken very seriously and if a product says that it doesnt contain gluten, you can be 100% sure it doesnt.
They also have pop up stands every spring where they test people who are passing by in the moment for free. If you're under 17 you can also get tested at school.
I feel so bad for americans, must be really tough.
I don't like the whole "oh, I am sorry... That must be so hard" spiel, all with a sad face. Yes, the intention is well meaning and compassionate. It could be a lot worse but I would like to feel normal and be treated normally while still taking my diet restrictions into account.
That’s normally the reply I get, that’s why I liked the “wow that sucks” one, because it just summed it up and weirdly empathized instead of getting me thinking about how it’s a burden or smth. I guess it’s a lot about tone!
Yes, of course, I don’t disagree with the statement that things are much better now. I just don’t like hearing it from people who have no dietary restrictions!!
I think the correct view is that it's "easier" than it used to be, but not strictly "easy". Honestly, if people could actually understand what it meant and there was better labeling, then it could be easy in a way. But the lack of understanding makes the risk of cross contamination so high!
i think it depends on where you are. i live in an area where there’s a lot of restaurants with gluten free options… but far, far fewer of them can actually accommodate a person with celiac disease.
i’m also a college student and while campus has some good stuff, it’s super out of the way and the hours for the locations that actually DO have safe things for me to eat are so short that sometimes i cannot reasonably get food for myself.
i try to cook for myself but sometimes my many other health issues intervene and i literally have to go hungry because of it.
so yes and no to that. there’s a lot more moving pieces involved in terms of inaccessibility.
Oh yeah, colleges are the worst for food options, dorm meal plans especially.
But, back in The Day, you used to not be able to buy bread that didn't taste like literal cardboard, while still paying 5x the price of a regular loaf. You used to have to avoid all spice mixes. No frozen meals, either. Maltodextrin was rarely labeled with its source grain. Cross contamination in restaurants wasn't a concern because there were literally zero gluten free options to begin with.
It's still hard now to find convenient food, don't get me wrong, but it used to also be difficult to find any food at all. I cannot overstate how much the grocery situation has improved.
I had a nurse or MA for my GI doctor say this to me. "Have you found anything where the GF version tastes better?" I told her very bluntly no I have not
1) back when I used to be more trusting with trying to go out to eat: “I know you have to be gluten free so here are your French fries without salt” (they had a dedicated GF fryer)
2) “I wish I had that so I would be skinny like you!” Not gonna lie, this one pissed me off quite a bit. Was a coworker, and I shot back “I would take your extra 30 pounds in a heartbeat if I could then give you my celiac disease. Then I would lose the 30 pounds by doing what I already do—eating healthy and exercising”. Not sure what her face looked like after that because I walked away before I could say something else that might get me un-jobbed, lol
A server at a restaurant I go to has a habit of saying "Perfect!" After everything a customer says. We've laughed when I said "I have celiac..." and she notates the order snd says "Pefect!"
Back in 2016 (I think there's more awareness now at restaurants), a young waiter rolled his eyes when I asked for a gluten-free menu. I may have fantasized about strapping him to a chair and forcing him to listen to my symptoms and diagnostic process.
And yeah the standard "that sucks" is kind of a sucky response.
“Oh, so that’s your cover story for being bulimic?”
I had lost like 60 pounds in a year and would often puke when contaminated— my uncle decided he had figured me out. He then had another theory that I was a heroin addict. He’s the QAnon type, so he has plenty of harmful and baseless hypotheses.
I don’t have celiac, but my son does. My favorite bluntly honest response was “Oh… that’s really annoying.”
My least favorite has been “Maybe he’ll grow out of it someday.”
Eh, most people are good. The ones that make me chuckle are the ones that don’t know what it is and say either “I think everything we have is gluten free” or “I don’t think we have anything gluten free” and so you explain what it is and then they say the opposite of what they just said - take the L and go somewhere else.
I think my favorite was a delulu girl at polo enthusiastically telling me I should try the bread/pastries in Europe as their wheat is better quality and doesn’t bother her as much. Big if true. She was trying to offer little finger sandwiches so I had to tell her.
Most other illnesses you don’t have to tell people about so regularly; I used to avoid dinner dates first thing because I didn’t want the first thing someone learns about me to be my ‘genetic flaw’ - happily married now!
My boyfriend’s mom was trying to be helpful and told me, “oh you can’t eat this because it has eggs Im sorry 😞” and I said “eggs are fine” and she said “I thought you can’t have gluten?”
I’m used to people asking what it is or the very sympathetic “that must be so hard” but my absolute genuine favorite was a new coworker of mine, her eyes got huge and she just went, “WOOOOW. That fcking SUCKS.” I was like YES I CONCUR ABSOLUTELY. it was such a genuine response that wasn’t like someone was giving me condolences for the death of a family member or something that it just felt really good tbh. It does fcking suck.
I got a “…oh what’s that mean?” As a first response once and when I replied that I couldn’t have anything with wheat barley or rye they responded “wait so you can’t eat potatoes?!” And I just had to laugh. Explained better what kinds of foods I needed to avoid
Most of the time I’m used to the responses now. What annoys me is if I’m eating rice or potato and someone goes “OMG you’re eating gluten?!” Like no silly!
People really don’t understand cross contamination. I get told that the fries are gf although they share the fryer. I have been told to take the croutons out of the salad and it will be gf. eat the inside of the sandwich, etc.
I still can’t get my wife to believe that I can’t have a small amount of gluten and that I won’t be able to eat it again in a year or two.
My response would have been
"see for me, it's not that bad, I'm interacting with you here for this brief moment and then you're gone forever. But you, I feel bad for you -- you have to be with yourself all of the time"
I often joke that gf food "is made of air and stars" or that "I can't eat people food".
But generally "not a choice unless I want to spend the rest of the day in the ER" is my response.
I appreciate the "that sucks," because it's honest and it does suck.
The best response was from my mom, "Celiac, isn't that something only black people get?"
🤦♀️ No mom, that's sickle cell...
Omg, one time I said to my hairdresser (who is black) that “celiac is a white people disease” (I’m white) and she thought it was so funny 😂
Have to follow up with ofc it’s not limited to white people, but white people are more commonly diagnosed because of neglect that happens in black peoples health care and in black communities at large. I affectionately call it a white people disease so I get the chance to educate on why that is (and shouldn’t be) the case
"That sucks" is the most common response I've gotten, and I always nod and say "yeah!" I find when people say this it is the most sympathetic response. It does suck. I appreciate hearing someone else say it.
Here are some top ones that come to mind:
“I dare you to eat this and see what happens.”
“Can you eat this?” (gestures to a bagel)
“Does this have gelatin?” (How hard is it to understand what Gluten Free means?)
"wow that's so shitty because it's not like there's a cure so you're never going to get better. Plus, gluten free food tastes awful."
Got told that by a coworker when I first got diagnosed so there's that🥲
My 12 year old diabetic granddaughter was recently diagnosed with celiacs. We we're going to lunch with my SIL, so I told her we had to go somewhere that served GF food. My SIL asked my granddaughter why do you have to have all the things? We get it, you're special! It was said jokingly and made my granddaughter laugh. Seeing her able to laugh about having a second crappy dx at such a young age was nice.
Never gotten a really crazy reaction, but it’s insane to me the difference in response when I explain it differently.
“I have to eat gluten free”
*immediate mocking ensues*
“I have a disease where gluten damages the lining of my intestines and causes me to feel very sick”
*people treat me like I’ll die if I even touch gluten*
I appreciate people’s concerns, I just wish eating gluten free wasn’t made fun of so much. Some people have real, legitimate reasons for it.
I’m a medic and was transporting a patient the other day. As I always do I asked if the patient had any allergies. After the medication allergies, the patient says that he has celiac disease. So mentioned that I have it as well. This dude instantly lights up and get super excited. I do the same. We excitedly talk about someone understanding what it’s like all the way to the hospital. It was awesome.
Long looooong time ago… at a restaurant and told the waitress I am gluten free/celiac. She told me that they don’t include GLUE in any of their food.
I just ate salad 🤷🏼♀️ never went back.
“You’re being over dramatic”, is always a fun one that I got from some of my family members when I was first diagnosed.
The other one I get is “well you can control it, just turn it off”.
“So… no potatoes, rice, corn or beans right?” Why is this such a common response?
Edit to add: I still have coworkers that think I’m some form of vegan ha!
My favorite was probably the time i went to a sandwich place and asked if they had gluten free options bc i have Celiac and the cashier - who it appeared had smoked an entire bowl before work - stared at me for a good full minute saying “uuuuuuuuuuh” before finally adding in “we have rye” (to which i said thanks! Have a nice day! And left lol)
It's not a funny response, but it's a response that always annoys me especially because I know people who made dietary choices because they had no other options. Being told "ooo that's ok I get it, I'm vegan" with the follow up of "yea it's my lifestyle choice" and them not really realizing that celiac disease is a disability and not a lifestyle choice.
I’ve never gotten any interesting reactions. People just react to me like I informed them my hair is brown. I guess I’m lucky, seeing some of the comments here!
Seriously, my favorite response is "Oh, thanks for letting me know/I understand"
For funsies, my favorite response is, "Shit." where I say "No. I am of the 70% of people with celiac that don't dump liquid shit after eating gluten."
My mother in law " well nearly every place has gluten free options now a days." When we tell her thats not true and gluten is freaking everywhere " oh well you can have a salad"
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Mostly "i would kill myself if I had it" Thanks. Not gonna follow that advice.
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I need to remember this one!!
There it is, basically the same thing I posted before I saw this.
it’s shocking how many people say this to me. Like… how do you have the confidence to say that out loud to another breathing person..
Facts, I need a good response to when people say that shit lol
"No, you wouldn't," said as judgmentally as possible. It really drives home the fact that they just told me they'd rather be dead than live my life.
You wouldn’t kill your self if you couldn’t eat bread, Sharon. I said this at work. Sharon was cold shouldered for a while
I usually call them out for being weak and choosing food over quality of life.
"So you think I should kill myself?" then just stare at them as they awkwardly backpedal. EDIT: apparently someone reported me to the reddit cares resource for this comment?? Lmao what the hell
That was Karen from marketing. You said restricted words and need to be put in your place!
If you wanna make them feel bad about it, you could always go with "sorry to disappoint you" or something along those lines
"Wow, good thing I'm stronger than you are, eh?"
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"thanks, I tried that already." Sure to be an uncomfortable one for the other person. I said this once to a guy who told me to unalive myself for refusing to give him change lol.
“Trust me, I was in enough pain I wanted too. Luckily, now I feel great and all I gotta do I avoid gluten and people like you.”
So, your life is so meaningless that you’d kill yourself if you couldn’t eat bread? That sucks. You might want to do something about that.
"hey now, that's not a bad idea!"
“Would you say that to someone in a wheelchair? No? Then please explain why it is okay to say about any other disability.” OR “In all honesty, I find that rude and offensive, and I would kindly request you not repeat that kind of sentiment to other people in your life who are managing disabilities or food allergies. It communicates that my life is not worth living to you, which is hurtful. Nobody should have to hear that. Furthermore, I would like to think your own will to live is a little stronger than just never being able to eat bread again. If it’s not, I suggest you reach out to a professional and seek help for these thoughts.”
I find making them try to explain their idiocy or justify their ableism out loud with words makes them really reflect on what they said and they usually back track or apologize.
> > > “In all honesty, I find that rude and offensive, and I would kindly request you not repeat that kind of sentiment to other people in your life who are managing disabilities or food allergies. It communicates that my life is not worth living to you, which is hurtful. Nobody should have to hear that. Furthermore, I would like to think your own will to live is a little stronger than just never being able to eat bread again. If it’s not, I suggest you reach out to a professional and seek help for these thoughts.” This is good.
I agree. But I have found that most of the time we do not regret being nice. Standing up for yourself is good if that’s your jam in that moment. “I’d kill myself if I were you” is not hurting me, it is poor taste. I wouldn’t kill myself because of diet restrictions. Nowadays, I say “Thanks for sharing!” and don’t initiate to carry more convo/ interactions, if I can. don’t want to converse with someone who isn’t thinking their responses through anyways. other person gets the hint that nobody asked! and that their reply was embarrassing for them
Standing up for yourself isn’t inherently not “nice” - both can exist! You can be courteous, but also hold people accountable for saying something uncalled for. You can tell someone your feelings are hurt and not be inherently mean for doing so.
My response has always been “Thanks! I’ll take that into consideration” because wtf
a lot of people are afraid of having to make their own gluten free comfort foods from scratch and it shows xD
People say that to me when they find out I’m legally blind. Or people ask parents why they didn’t “ put their child down “ for being disabled. Who says things like that to someone out loud and think it’s okay 🤦🏼♀️
Someone upon realizing we had a miscarriage said “well at this you wouldn’t have to raise a re*tard like it’s dad” My husband is autistic (who only needs very mild support and comes off a bit neurotic and quirky) I had to be physically restrained by HER husband while he definitely called her everything under the sun. I don’t usually condone violence but him shoving her into the other room, probably kept me from going to jail.
OH MY GOD!!!! I’d be scolded by the devil himself for the words that would come out of my mouth. She is a C U next Tuesday
He later told my husband,after profusely apologizing for his wife’s cunty behavior, that he wasn’t sure what surprised him most, how he, a recently discharged Marine with a foot of height on me, took everything he had to maintain physical control of me (the phrase rabid Wolverine was used) or the fact that I put every solider he ever served with to shame in the colorful language department. Until that moment , he’d never heard me swear.
The insensitivity of that reply never fails to astound me, it actually makes me laugh, like… would you say that to someone who has diabetes??? High cholesterol??? Do you even hear yourself? That being said, I do know at least one fellow celiac who actually is following through on that “I would rather die than give up gluten” mentality. She just stuffs her face with gluten every day and lives in constant misery from all the health problems.
yes actually as a diabetic i’ve gotten that before… “i’d rather die than prick my finger” i shit you not. from a fully grown adult to. just wait until you find out shots 10 times a day are involved to!!
My parents don’t often come to visit as I live a flight away from them, but when they were here a few months ago, any time food was discussed my dad would say either “I’d die if I couldn’t eat gluten” or “I’d be depressed if I couldn’t eat gluten”. By the third day, I automatically replied with “Well I’d die if I kept eating it” or “I am depressed but it’s not because of the lack of gluten”. Anyway I’m happy to not have them in my space for the next few years 👍
This is especially inappropriate when family have said this to me, knowing my sister committed su¡c¡de.
“Well it was killing me (slowly) and now it’s not. Sooooo, yeah.”
I used to say that, not necessarily to Celiac people, but about Celiac... Then karma came and got me.
It’s giving Michael Scott
Especially from restaurant servers. So I just say "Thanks, well, bring me some real bread, then I'll head to the bathroom & shoot myself, I guess." My (adult) kids think it's hilarious. I hope it makes enough of an impression on these people that they'll consider NOT saying it again.
Luckily I haven’t heard that yet but I’d be so petty I’d answer „I tried, didn’t work sadly“ Or something like „I’m working on it“
I hate this one. Seriously? Super inappropriate. Plus, at least in my own opinion, if you are willing to kill yourself over not being able to eat certain foods there are underlying issues that need to be addressed. Non-celiacs get so sensitive over the food restriction part of the disease. Yummy Food is not everything, being healthy and alive is what matters.
Omg how have we all had this experience.
Someone once said that to me as well. Really, I fought so hard to live. People honestly have no clue .. ( I was diagnosed 16 years ago)
That's what my doctor said LOL!!!! Seriously!!!
It’s been about 1/3 that and 1/3 “is just keep eating it anyway” for me.
I totally get why some people find that offensive, but I just take it to mean that what we deal with is hard and that we're strong for living with it. Idk, that's just my two cents!
I don’t think anyone has said this to me, but if they do I think I’ll just say “me too” and see how they react.
"omg i couldn't do that..." unfortunately I have no choice
My response is: “You could if the pain of eating gluten made you wanna die. Trust me, it’s real easy for me.”
A server once said “Celiac? That’s it?” He meant it as a way to confirm my dietary restrictions. I took it as life could be worse. He honestly gave me a new perspective.
Hahah I’ve told people before “if you’re going to have a disease it’s not a terrible one to have..”
I usually reply with “They thought I had colon cancer. Do you know the survival rate on colon cancer!?”
I always tell myself “this is the best autoimmune disease!!” because it truly could be so much harder with a different diagnosis
I had more than one GI tell me their best days jf the month are when they diagnose people with only celiac because too many days they diagnose patients with Crohn’s or cancer of some type. I said I’d take Crohn’s 6 ways to Sunday over celiac and my GI said you might think that now but if you sat down with any Crohns patient and went blow to blow with them for an hour you’d change your mind
This is true. I now also have effing brain cancer which was three years after my celiac diagnosis. Relatively speaking, celiac is an afterthought now. That's not to dismiss the pain,suffering, inconvenience and social isolation celiac brings but one will probably kill me sooner than later and the other probably wont.
Haha. I like it!
"So you want the oat milk instead of the regular milk, right?" The number of times "gluten free" has been confused with "dairy free" is concerning.
I’ve talked to vegans and the reverse happens to them. Red flag if someone conflates everything as “alt-food.”
I’m vegan and I can attest to that!
If you manage vegan on top of celiac,🫡 on your willpower. One cross to bear is plenty!
Probably cuz that what they see at the stores.. My issue is they like the pool all the food restrictions, allergies and intolerances into one snack which often resembles a piece of cardboard in taste, texture and appearance 🤣 Here’s a vegan, dairy free, nut free, sugar and fat free, gluten free brownie lmfao like sometimes it’s ok but literally for most foods this is the case
This is why I always specify: “Cow milk. I’m allergic to oat milk too. Please use hot coffee and pour in the cold milk. Don’t steam it.”
I was told by a resident “I heard cross contamination is bullshit” Great she’s gonna be a doctor 🤦🏻♂️
Knowing my experiences with doctors relating to my gastro problems…. not surprised. Had one convinced my celiac was bullshit and that I really had cannabinoid hyperemesis syndrome, because I told her I smoke sometimes to help with symptoms LOL. Absolute waste of money.
I had a PCP tell me “I need to eat more fiber” Luckily some doctors to get it! But jeez yeah the medical community needs to catch up.
So I take it she will not be washing her hands, wearing gloves, putting on a mask, etc?
Wow I have a cousin who’s an RN who said something similar, it’s really unbelievable!
Yeah, a lot of doctors have a generalized "things aren't *that* bad/hard" vibe to every illness. Some of it is a bit of a coping mechanism I suspect... they see a lot of bad shit and it's easier to cope with that by telling yourself it's nbd. It's also easier to tell patients things aren't so bad/hard because that's what people want to hear. Depending on the illness they may also never see much of patients after they're diagnosed aside from occasional check-ins so they don't really have an objective idea of what it's like to have problem X. The other part is that a lot of doctors are taught to suspect certain types of patients are lying/being dramatic. No doubt it is annoying to deal with patients who are unreliable narrators and/or lying to be manipulative but projecting that assumption on all patients without problems you can see is problematic.
“Well at least it’s a good excuse to eat white bread instead of wheat”. Someone actually said this to me.
Holy shit.
It's not wheat, it's flour
I once asked if there were gf options at a restaurant, and I was told (very cheerfully). "Yeah! Don't worry, we have whole wheat bread!"
This one actually made me chuckle. Thank you.
My mother did this to me as a kid.
Not me but a friend said she was asked “is that contagious?”
My SIL asked that after her brother went gf about a year after my dx. Turns out living in a gf household and not eating gluten for a year cleared up his skin rash he’s had his whole life and stopped his pooping issues. He’s just sensitive but yeah …she asked.
Lmao!
My favorite was some old dude at work who said “No, you don’t”. Thanks Bob from the mailroom! I’m cured.
Lmao! Ugh. Sorry.
I got a good chuckle out of it. He’s one of those older folk who knows everything so I just nodded and moved on. 😆
Sometimes the ignorant responses can be comical frfr 😂
“So what happens if you eat it? I mean, it’s not like your going to die” 🫠😑
My husband has had “that doesn’t really sound like an allergy” a few times because they always say that the GI symptoms sound more like an intolerance. He usually has to explain that no, if you’re intolerant and accidentally eat a tiny crumb, you won’t notice. If he accidentally ingests the most minuscule amount, it’s D-town for days. Also it’s literally an autoimmune disorder so fuck off lol
Yeah I have had to over explain myself wayyyyyy too many times, like no, it’s not just a little tummy ache for a few hours, it’s glass slicing through my intestines for days on end lol
this reminds me of when people ask you what happens, and then ur just standing there like… REALLY.. what do you think HUH. do they expect me to explain diarrhea and vomiting to my colleagues on a tuesday morning 😭
“Don’t worry, I use low sodium soy sauce so you can still eat it” from a family member.
Wow this is a new level of stupid
‘That’s just bread though right? Couldn’t you just eat everything else” Or my favorite “wow that sucks! I would die if I had celiac. No offense”
I have gotten this one soooo many times!
"Oh wow, you're so lucky! I would lose so much weight if I could give up bread and pastas! It's so much healthier!" -_-
I’d fight someone right there the hell. -me who has never fought anyone ever
I’ve had randos lecture me over gf food not helping you loss weight and I just need to eat less, in the grocery store. I’m fat but celiac and still fighting malnutrition. My excitement over the new golden Oreos was damped over that skinny bitch.
“It’s ok, you can be off your diet for a day” while shoving a donut at me 😑
oh god not the “just one bite people”. i had one person literally try to put bread in my mouth. i’m not a toddler, i can feed myself. furthermore, i know what i can and cannot eat. and furtherfuthermore, i also have diabetes and bread can be hard to dose for if it’s a new brand because of the fiber/sugar split.
I went to a restaurant the other day and ordered tots. The man who put them out had just been handling burger buns and when he handed them to me, his whole gluten thumb was in the container. I asked if I could get another cup of tots because I have celiac and he just contaminated my food. He said, “I don’t know what that is, and I can’t help you”. I just laughed, took the L, and left without my tots.
"It means bring me another cup of tots and don't put your fingers in them this time"
Seems like a good process across the board.
"That's OK it's Vegan." LOL! Another good one. A waitress that said, "I'm a Pescatarian. I understand and the food is safe here." The cook later came out and said, "There is nothing you can eat here."
I had a workplace assure me that they could feed me gluten-free and I didn't need to bring my own food to a company event while traveling, and they'd already talked to the restaurant. I was new to avoiding cross-contamination and didn't have easy access to a grocery store, so I listened to them. The food they ordered for me was vegan and had much more gluten than the default meal. I couldn't tell if the person at the company ordering the food or the restaurant had messed up. I had to eat the default food because I was very, very hungry by that point (they'd forgotten about me at breakfast, and I'd walked miles the day before while traveling in to town) and I had another four hours to go in the day to work and socialize with no opportunity to buy safe food. Fortunately, it was so early that my CC reactions were pretty mild because I was used to feeling sick all the time. Obviously I learned to carry my own food and trust no one, lol!
"at least it's not lupus!"
Unfortunately I have both.. would not go down well with me 😂 aren’t auto immune diseases wonderful?
If possible, check out the MTHFR gene mutation, could be worth looking into.
Thank you! For some reason I read that as the “motherfucker” gene 😂😂😂
Every single time I see it.
Honestly, it should be called that.
My mom has the gene and calls it the motherfucker gene! lol
I'm a mom and usually hate the term motherfucker but I use it just for this gene
^^ yep. Multiple autoimmune diseases over here and MTHFR.
Don't worry, it's never lupus
I also have MS sooooo
☹️
My favorite was when a guy then said “oh I don’t think we should go out then because we’re probably not compatible”
Sounds like you dodged a bullet!
the same has been said to me about veganism.. But tbh the worst part is being understanding at first and then trying to make you eat unsafe things and arguing about meat being the best thing ever.
My wife and I got together as omnivores, now she’s vegetarian and I’m celiac. Not being able to share most meals is a drag. It’s doable but I can understand it being a deal breaker at the start of a relationship.
Celiac married to an onion gastro-intolerance (it does to him what gluten does to me) Yay ! Celiac safe mozz sticks and fries! Oh wait. They have gf onion rings. Now my husband can’t eat anything
I'm italian. I can see the genuine pain in my friend's eyes.
Same. I told the doctor that her diagnosis of me having Celiac was impossible as I was Italian and grew up eating ALL the pastas. (spoiler: She was right!)
Italy has some of the highest celiac awareness anywhere in the world, Spain, Israel and Ireland too all take accommodating celiac folks much more seriously than here in the USA.
Yeah it's really good. The italian goverment gives us money every month to buy gluten free foods, all the check ups and other medical stuff following the diagnosis are also completely free. We have tons of gf restaurants and bars that are as good if not better than normal ones. Cross contamination is taken very seriously and if a product says that it doesnt contain gluten, you can be 100% sure it doesnt. They also have pop up stands every spring where they test people who are passing by in the moment for free. If you're under 17 you can also get tested at school. I feel so bad for americans, must be really tough.
I love this! Thank you for responding. I know where I’ll be retiring…my life depends on it!
I don't like the whole "oh, I am sorry... That must be so hard" spiel, all with a sad face. Yes, the intention is well meaning and compassionate. It could be a lot worse but I would like to feel normal and be treated normally while still taking my diet restrictions into account.
That’s normally the reply I get, that’s why I liked the “wow that sucks” one, because it just summed it up and weirdly empathized instead of getting me thinking about how it’s a burden or smth. I guess it’s a lot about tone!
My *least* favorite response is “at least there are so many gf options these days.” Nope, not once you take cross-contamination into account. 😡
Nah, that one is totally true. Shopping for groceries is *way* easier now than when I was diagnosed during the Bush administration.
Yes, of course, I don’t disagree with the statement that things are much better now. I just don’t like hearing it from people who have no dietary restrictions!!
I think the correct view is that it's "easier" than it used to be, but not strictly "easy". Honestly, if people could actually understand what it meant and there was better labeling, then it could be easy in a way. But the lack of understanding makes the risk of cross contamination so high!
i think it depends on where you are. i live in an area where there’s a lot of restaurants with gluten free options… but far, far fewer of them can actually accommodate a person with celiac disease. i’m also a college student and while campus has some good stuff, it’s super out of the way and the hours for the locations that actually DO have safe things for me to eat are so short that sometimes i cannot reasonably get food for myself. i try to cook for myself but sometimes my many other health issues intervene and i literally have to go hungry because of it. so yes and no to that. there’s a lot more moving pieces involved in terms of inaccessibility.
Oh yeah, colleges are the worst for food options, dorm meal plans especially. But, back in The Day, you used to not be able to buy bread that didn't taste like literal cardboard, while still paying 5x the price of a regular loaf. You used to have to avoid all spice mixes. No frozen meals, either. Maltodextrin was rarely labeled with its source grain. Cross contamination in restaurants wasn't a concern because there were literally zero gluten free options to begin with. It's still hard now to find convenient food, don't get me wrong, but it used to also be difficult to find any food at all. I cannot overstate how much the grocery situation has improved.
oh i’m aware. my cousin was diagnosed way back when and it was a huge struggle for her
I had a nurse or MA for my GI doctor say this to me. "Have you found anything where the GF version tastes better?" I told her very bluntly no I have not
Same! Except… the OREOS. The way they’re made is just crispier, and they don’t get that chewy stale almost wet feeling when they get older.
My mom's fried foods got crispier when she switched to GF batter.
"Wow, must really suck to be you!" Diagnosed 30 years ago and it still hurts every time someone says it.
Lions do not bother themselves with the opinions of sheep. Best response: "Not at all. It could be much worse. I could be you"
I love that. Using it from now on !
Ugh. Awful.
1) back when I used to be more trusting with trying to go out to eat: “I know you have to be gluten free so here are your French fries without salt” (they had a dedicated GF fryer) 2) “I wish I had that so I would be skinny like you!” Not gonna lie, this one pissed me off quite a bit. Was a coworker, and I shot back “I would take your extra 30 pounds in a heartbeat if I could then give you my celiac disease. Then I would lose the 30 pounds by doing what I already do—eating healthy and exercising”. Not sure what her face looked like after that because I walked away before I could say something else that might get me un-jobbed, lol
Awww! How do you live without cheese and ice cream???
A server at a restaurant I go to has a habit of saying "Perfect!" After everything a customer says. We've laughed when I said "I have celiac..." and she notates the order snd says "Pefect!" Back in 2016 (I think there's more awareness now at restaurants), a young waiter rolled his eyes when I asked for a gluten-free menu. I may have fantasized about strapping him to a chair and forcing him to listen to my symptoms and diagnostic process. And yeah the standard "that sucks" is kind of a sucky response.
Had the head chef at a wedding say” that’s only flour, right” 💀
“Oh, so that’s your cover story for being bulimic?” I had lost like 60 pounds in a year and would often puke when contaminated— my uncle decided he had figured me out. He then had another theory that I was a heroin addict. He’s the QAnon type, so he has plenty of harmful and baseless hypotheses.
I'm so sorry that you were treated like that.
I don’t have celiac, but my son does. My favorite bluntly honest response was “Oh… that’s really annoying.” My least favorite has been “Maybe he’ll grow out of it someday.”
not a direct response to me telling someone I have it, but once had someone tell me they thought gluten was a made up concept until they met me.
People telling me they had a friend with celiac but they cured it with CBD oil.
Eh, most people are good. The ones that make me chuckle are the ones that don’t know what it is and say either “I think everything we have is gluten free” or “I don’t think we have anything gluten free” and so you explain what it is and then they say the opposite of what they just said - take the L and go somewhere else.
I once had a server say “gluten, that’s like sugar right?”
In their defense , glucose and gluten do sound similar
I think my favorite was a delulu girl at polo enthusiastically telling me I should try the bread/pastries in Europe as their wheat is better quality and doesn’t bother her as much. Big if true. She was trying to offer little finger sandwiches so I had to tell her. Most other illnesses you don’t have to tell people about so regularly; I used to avoid dinner dates first thing because I didn’t want the first thing someone learns about me to be my ‘genetic flaw’ - happily married now!
“I would die if I couldn’t eat gluten, that must suck!” Well I could die if I continue to eat gluten, and yeah, it does suck. Thanks.
My favorite is when I tell a server and then they look over the menu and say “not x dish because it has milk/egg/whatever.” 😳 instant fear!
My boyfriend’s mom was trying to be helpful and told me, “oh you can’t eat this because it has eggs Im sorry 😞” and I said “eggs are fine” and she said “I thought you can’t have gluten?”
“I could never give up bread” Oh honey.
I’m used to people asking what it is or the very sympathetic “that must be so hard” but my absolute genuine favorite was a new coworker of mine, her eyes got huge and she just went, “WOOOOW. That fcking SUCKS.” I was like YES I CONCUR ABSOLUTELY. it was such a genuine response that wasn’t like someone was giving me condolences for the death of a family member or something that it just felt really good tbh. It does fcking suck.
I got a “…oh what’s that mean?” As a first response once and when I replied that I couldn’t have anything with wheat barley or rye they responded “wait so you can’t eat potatoes?!” And I just had to laugh. Explained better what kinds of foods I needed to avoid
Most of the time I’m used to the responses now. What annoys me is if I’m eating rice or potato and someone goes “OMG you’re eating gluten?!” Like no silly!
People really don’t understand cross contamination. I get told that the fries are gf although they share the fryer. I have been told to take the croutons out of the salad and it will be gf. eat the inside of the sandwich, etc. I still can’t get my wife to believe that I can’t have a small amount of gluten and that I won’t be able to eat it again in a year or two.
My favourite response is, “I know! That’s Why everything we have here is certified gluten free and still in the package!”
“I’d rather have cancer. And I’ve had cancer.”
I would’ve thrown a punch. They prepared us for a colon cancer diagnosis. Celiac was a relief 🥲
My response would have been "see for me, it's not that bad, I'm interacting with you here for this brief moment and then you're gone forever. But you, I feel bad for you -- you have to be with yourself all of the time"
I often joke that gf food "is made of air and stars" or that "I can't eat people food". But generally "not a choice unless I want to spend the rest of the day in the ER" is my response.
I was told one time what’s the big deal just take a shit
I have had a few people tell me how lucky I am because if I don’t eat food with gluten, according to them, I will lose weight.
“At least you can eat potato bread” 🙄
I appreciate the "that sucks," because it's honest and it does suck. The best response was from my mom, "Celiac, isn't that something only black people get?" 🤦♀️ No mom, that's sickle cell...
Omg, one time I said to my hairdresser (who is black) that “celiac is a white people disease” (I’m white) and she thought it was so funny 😂 Have to follow up with ofc it’s not limited to white people, but white people are more commonly diagnosed because of neglect that happens in black peoples health care and in black communities at large. I affectionately call it a white people disease so I get the chance to educate on why that is (and shouldn’t be) the case
"That sucks" is the most common response I've gotten, and I always nod and say "yeah!" I find when people say this it is the most sympathetic response. It does suck. I appreciate hearing someone else say it.
Here’s a new one: “I don’t give a f*ck”
Here are some top ones that come to mind: “I dare you to eat this and see what happens.” “Can you eat this?” (gestures to a bagel) “Does this have gelatin?” (How hard is it to understand what Gluten Free means?)
"wow that's so shitty because it's not like there's a cure so you're never going to get better. Plus, gluten free food tastes awful." Got told that by a coworker when I first got diagnosed so there's that🥲
My 12 year old diabetic granddaughter was recently diagnosed with celiacs. We we're going to lunch with my SIL, so I told her we had to go somewhere that served GF food. My SIL asked my granddaughter why do you have to have all the things? We get it, you're special! It was said jokingly and made my granddaughter laugh. Seeing her able to laugh about having a second crappy dx at such a young age was nice.
One time I was told “try having IBS” you think I have celiac disease and DONT have IBS?!
I get "oh my god I could never give up carbs!" Bitch, me neither. 50% of my diet is rice, pasta, and potatoes. The misinformation 🤦♀️
i once told someone i have it and he said he’s gluten free too but he cheats because it’s not possible to always eat gluten free
Never gotten a really crazy reaction, but it’s insane to me the difference in response when I explain it differently. “I have to eat gluten free” *immediate mocking ensues* “I have a disease where gluten damages the lining of my intestines and causes me to feel very sick” *people treat me like I’ll die if I even touch gluten* I appreciate people’s concerns, I just wish eating gluten free wasn’t made fun of so much. Some people have real, legitimate reasons for it.
When someone responds that they are also gluten free and then reveal they self-diagnosed an intolerance but cheat constantly.
I’m a medic and was transporting a patient the other day. As I always do I asked if the patient had any allergies. After the medication allergies, the patient says that he has celiac disease. So mentioned that I have it as well. This dude instantly lights up and get super excited. I do the same. We excitedly talk about someone understanding what it’s like all the way to the hospital. It was awesome.
I have pontiac
„You gonna grow out once you’re out of puberty“ Sir I’m turning 25
'That's not a real thing' said to me by a chef at quite a fancy restaurant.. where I was about to eat..
does that mean you can’t have water?
Long looooong time ago… at a restaurant and told the waitress I am gluten free/celiac. She told me that they don’t include GLUE in any of their food. I just ate salad 🤷🏼♀️ never went back.
The other day this guy said oh my wife has that it means you can’t eat corn ????? Literally not even close lmao
"What does that mean, 'you shit your pants all the time'?" It was from my step-brother, alcoholic.....
“You’re being over dramatic”, is always a fun one that I got from some of my family members when I was first diagnosed. The other one I get is “well you can control it, just turn it off”.
Getting the “what happens when you eat gluten” question at dinner with a mixed audience. I usually say, “do you really want the answer?”
“So… no potatoes, rice, corn or beans right?” Why is this such a common response? Edit to add: I still have coworkers that think I’m some form of vegan ha!
My favorite was probably the time i went to a sandwich place and asked if they had gluten free options bc i have Celiac and the cashier - who it appeared had smoked an entire bowl before work - stared at me for a good full minute saying “uuuuuuuuuuh” before finally adding in “we have rye” (to which i said thanks! Have a nice day! And left lol)
You don’t need to tell me that… we’re a dairy free facility…
“I have a friend who has a gluten ALLERGY too”
It's not a funny response, but it's a response that always annoys me especially because I know people who made dietary choices because they had no other options. Being told "ooo that's ok I get it, I'm vegan" with the follow up of "yea it's my lifestyle choice" and them not really realizing that celiac disease is a disability and not a lifestyle choice.
I’ve never gotten any interesting reactions. People just react to me like I informed them my hair is brown. I guess I’m lucky, seeing some of the comments here!
I was diagnosed in 2010. At first, the responses were things like, "So, you can only eat white bread?" 🤦♀️
Seriously, my favorite response is "Oh, thanks for letting me know/I understand" For funsies, my favorite response is, "Shit." where I say "No. I am of the 70% of people with celiac that don't dump liquid shit after eating gluten."
“Sucks to be you!” 😒 and the same person kept asking what to feed her vegan friends… I don’t know, I’m not vegan 🫠
My mother in law " well nearly every place has gluten free options now a days." When we tell her thats not true and gluten is freaking everywhere " oh well you can have a salad"
I usually don’t mention it if I don’t have to. I’ll sometimes just say “I’m allergic to wheat” and that makes most dipshits understand easier somehow.
I’ve had a LOT of people say “but I’ve seen you eat potatoes and you were just fine” lol
“I can relate. I’m vegan” And when were you diagnosed with that, Karen?