Let’s put our legal hats on today, shall we, and ponder the following question:
At what point in time does an establishment’s “rule” cross the line and turn into “discrimination” against celiacs?
(A quick Dude note…this is not about lawsuits or suing anybody for damages…just about trying to figure out what’s right.)
(Oh…and a second quick Dude note to anybody new here…when I use the term “celiacs”, I am referring to ALL people with gluten-related health issues.)
Consider the above question as you read an email I received yesterday:
I went to an ALL day concert event yesterday. I made sure I ate a BIG breakfast and packed my bars and sunflower seeds in my backpack. I left my cooler in my car as you are not allowed to bring them in the stadium. I had all the food I needed for the long day. When it came time for dinner, after I ate my bar and seeds for lunch, I went to go out to my car and eat. The people said I couldn’t go out and if I did, I was leaving for the day. I had my daughter and friends at the show and there was another five hours left to go. SO I had to starve. Not one thing in the place was safe to eat. I was so upset, so hungry, and so frustrated that anyone with Celiac or Gluten Sensitivity could not eat there! Either let me bring my food or provide me with some. I am so tired of feeling afraid to go places and enjoy things because I’m afraid I will starve or be sick!!
So here’s the question: Was she discriminated against?
People NEED food as a basic necessity.
Celiacs NEED gluten-free food to avoid getting very sick.
If you are telling me that I cannot bring food to your establishment for a 12 hour event, should you have to provide food that is safe for me to eat?
There was another case recently where a woman brought her 2 year old son to a Pizza Hut as part of a school event. Her son has celiac disease. So she “stopped at McDonald’s first to get him a hamburger without the bun, and some french fries, which is safe for him to eat.”
(I know, I know…but I’ll stay on topic.)
But when she arrived at Pizza Hut, even though the party she was with ordered pizza, the waitress told the woman and son that they could not eat the McDonald’s food in Pizza Hut and they had to leave.
(Fine…I’ll ask. Seriously? He has celiac disease and you went to McDonald’s??)
The woman said the actions of the Pizza Hut manager violated her son’s rights as a person living with a disability. She claims food allergies that interfere with “major life activities” are considered disabilities.
Marca Bristo, who helped craft the original Americans with Disabilities Act during the 1980s, said “…if a food allergy affects life activities, it’s got to be considered a disability and should fall under the act.”
So it’s very possible that while the two circumstance above are quite different, in both cases celiacs were discriminated against. And perhaps the policies need to change to help protect us better.
My question to you is simple: Do you agree?
And a follow up question: Have you ever felt discriminated against?
I was repeated delayed on a flight leaving a small airport to fly home. Given my original flight was supposed to leave at 8 am I had had a bit to eat thinking I would be home by 10:30 am. I was told 4 different times I would be on the next flight but didn’t leave until after 5 pm. Each time the flight was delayed I explained my Celiac concerns to the airline staff and I explained that the only things available to eat in the airport were pizza and sandwiches. I was told to walk to the grocery store 4 miles away if I was hungry. Yes I felt discriminated against.
I think that’s a reasonable request Ann. It’s not like it’s five miles or anything. Unreal!!
Yesterday I arrived after a 14 hour flight at Hong Kong Airport. My connecting Quantas flight was cancelled due to a mechanical fault. There was no gluten free food in the airport that I could eat and it was 11 hours before Quantas could access
my airplane meal. I actually collapsed from weakness which was embarrassing. I was booked on a Cathay pacific flight at 9.30am the next morning by Quantas who I heard order me a gluten free meal for the journey. I slept on an airport bench and was taken to get my boarding card at six am. I explained my predicament that I really needed to get that flight as there was no food I could eat in the airport and she told me I could eat anywhere and had no concept of my condition. She was ignorant and rude, said I needed a doctor and she could not offer me a gluten free meal on flight and tore up my boarding pass. Yes I feel strongly that this is discrimination by Cathay and will never fly with them again. I have to wait 10 hours for my flight now with Quantas who have been wonderful and arranged a special meal in their lounge. So if you have celiac disease do not attempt to fly with Cathay. I was once given an ordinary bread roll with my gluten free meal, which I spotted, and received no apology. I am seventy years old and have been made to feel very vulnerable by Cathay airlines who I previously thought were an excellent carrier.
i often feel discriminated against, but pizza hut doesn’t have to let you bring mcdonalds in, it was up to the host to make some kind of arrangements beforehand,
I tend to agree Rob for a short trip like this. Prepare ahead of time and for crying out loud, don’t stop at McDonalds.
There was a drive-in movie theater I wanted to go to one time, but they did not allow you to bring your own food. The only things they had to offer were pizza, hamburgers and fries, all things I cannot eat for health reasons. Of course we did not go.
When I go to a movie, which is very rare these days, I will bring my own food in. Let them try to stop me and watch the venom pour from my mouth.
This is a hard one, obviously it is hard to swallow, no pun intended, when you go somewhere and their rules are strict and will not allow the food or beverages you CAN actually have, to be brought in. But, in the same respect, you DON’T have to go there, they are allowed to serve the kind of food they want to serve, whether you can eat it or not. I think they should make some kind of allowance if they do not have GF food options, but c’mon, how many establishments are going to let you bring another establishment’s food in ? If she had brought food from home they may have been a bit more understanding! Just my opinion 🙂
I get your point Mandi. But for the 12 hour concert, there is something unfair about it.
I believe that celiac disease is a disability and that we should be afforded protection under the American’s with Disabilities Act. Not all disabilities are visible on the outside. Affording the status of disability would protect children in school who need their own food for special events as well as protecting adults in public situations where they need to bring their own food. Under the act, it is illegal to ask a person what their disability is but merely to know what accommodations they need.
This is a great topic that I look forward to hearing more feedback on. Let’s hear the pros and cons of this 🙂
I think your right but where do they draw the line as far as the disability goes ? I have not been diagnosed with Celiac…however, because I have a serious gluten intolerance my migraines and stomach issues have all but disabled me at times. Where would that leave people like me? I went for an allergy testing and because I had already been going GF ( the wonderful, expensive Dr never told me that it wouldn’t show up THEN ) nothing came up on the tests…but I am not willing to suffer the consequences of eating Gluten to just prove a point! I have soo much more energy now and I can FUNCTION almost completely normal now, I am amazed and a true believer!
I’m not 100% sure. I can see how the above stories can be viewed as discrimination. Working in the restaurant industry through has given me some insight – most chains don’t like it if you eat their competitor’s food in their restaurant. It’s essentially saying that the restaurant endorses you to eat their competitor’s food. That said, most normal people would understand if you said “Hey, my son can’t eat pizza due to severe food allergies, but we want to participate in the activity here at your facility. The food we brought in is safe for him to eat. We appreciate your understanding.” This works best if the food brought in is from home, and not a competitor’s, like McDonald’s in the situation above.
(Ok, sorry – seriously? McDonald’s? Really? Because that’s healthy. Ok, off soapbox.)
For me, I think that in order for discrimination to happen, the offending party needs to be aware of the difference of the other individual. If the offending party isn’t aware of the difference of the other individual, I see it as more ignorance than discrimination. Honestly, most of the workers at Pizza Hut, drive-thrus, stadiums, etc are, well, not the brightest or most informed. They are typically just restating company policy and don’t understand the true needs of our disability, mainly from a lack of training and eduction. People don’t know what they don’t know, and 99.5% of America doesn’t know about celiacs and what that means for us to eat properly and safely. Hence, the need to educate and advocate for our needs.
We have the curse and the benefit of our disability not being visible and not well known. If my skin color was different, then an offending person can obviously see the difference and can make a conscious or sub-conscious decision to discriminate against me. My Celiac Disease isn’t visible to anyone, unless they see me run to the bathroom 20 minutes after having unsafe food. Most people that I know thought a gluten-free lifestyle was one of choice, not necessity, prior when I educated them.
Overall, I would have to know more about the other people in the stories above, but don’t really see these as discrimination, as they are written/understood as above.
I’ve never been discriminated against. I’ve faced people that are being ignorant to Celiac Disease and my needs, but that usually goes away once I educate them. I typically state “I’m severaly allergic to gluten, found in wheat, barley, rye, and sometimes oats and malt. It’s like a peanut allergy for my gut. It’s just as serious, but I won’t die as quickly as a peanut allergy. Does that make sense?
Brian
Very, very well stated Brian.
Just want to point out that neither the burger or fries in question in this story are considered gluten free. I was diagnosed with celiac over four years ago and the only thing safe for me to eat at McDonald’s is the drinks (some), the yogurt parfait, apple slices, and the condiments, Even then, most of their products are problematic due to cross contamination like the fries. The only major fast food chain I can eat fries from is Chick-fil-a since they use dedicated separate fryer for the fries.
I was *just* talking about this with someone the other day. It’s a challenging topic, because there’s about a bajillionty shades of gray here.
Case in point: There is a movie theater here in the Chicago ‘burbs that I adore. But it’s one of those dinner and a movie joints, with a minimum purchase requirement. Unfortunately, NOTHING on their menu is safe. I was there for an Oscar event earlier this year (it was a 6-hour event, longer than a typical movie) and talked with their manager about the situation. I explained I would willingly buy drinks, but I needed to bring in food from home. My plan was to bring in HOME-MADE snacks, not something I’d purchased at another dining establishment, and I told the manager I would be incredibly discreet. They basically told me that my condition was not their problem, and that anything I brought in would be confiscated and I’d be asked to leave. Over the past 10 years, I have been to dozens of films and events here, and it’s not a cheap place. Nice treatment for loyal customers, eh?
But in a way, it’s my own fault. I chose to go to a place that was not welcoming. Does that make what they did to me illegal, or just poor customer service? What if it was the ONLY place in the area to go? What happens if it is a work function at a place with that sort of rigidity?
I wish everyone would just exhibit some common courtesy and human decency. As bad as I felt after that experience, a few weeks later I went to an event at a large concert venue, and had sneaked some GF crackers and sunflower seeds into my back, hoping to make it through security. Sure enough, my bag was searched, but when I told the security guard about being celiac, she just winked at me and told me she didn’t see anything. And I’m pretty sure total anarchy didn’t break out because I brought my own snacks.
Ugh, sorry this turned into a rant, but it’s just so easy to get indignant as a celiac, and it’s hard to know when it’s justified or when I’m just feeling particularly entitled.
Never apologize for a rant on my site Alissa. I don’t even know the guy at the movie event, but I hate him with a passion already.
Common courtesy does indeed go a long way.
Great post and a very necessary subject to discuss. I do agree with Brian that I think ignorance is behind many of these problems. But that still doesn’t excuse it. We somehow need to educate people as much as possible about our condition. However, many people will still probably just see it as some “minor food allergies” and not a “disability.” I think restaurants, airports and other public spaces need to be much more educated about these very real issues facing us daily and they also need to be more flexible. The problem is, if they are too flexible, then I think that people who don’t have Celiac disease (or any problem at all) will just feel that they are the exception to the rule and that they can do whatever they please. So it’s a real dilemma.
However, you do see blind people and people with seizures able to bring dogs into public places. However, their problems (at least with being blind) are far more obvious. It’s very difficult for us because most of us look normal on the outside and if people can’t *physically* see anything wrong, they tend to be much more skeptical and insensitive.
I can give an example. In 2001, I was living in Nebraska and had a bout of Lyme Disease (which I caught in New Jersey that summer). People in Nebraska know very little about Lyme Disease. Although I felt horrible, I looked normal. Yet people were very unsympathetic when I told them that was ill with Lyme Disease. They just couldn’t grasp the fact that someone can look normal yet still be suffering. People kept saying things like “well, you look fine to me…”
I think it’s a similar problem with Celiac Disease and gluten intolerance. People in the United States (and I live in the US, so I won’t speak for other countries) are still incredibly ignorant and uninformed about these medical problems. I’m hoping as people become more educated about them, they will begin to be more understanding. But I think there is a long way to go.
The other problem with being classified as “disabled” is that it has a very negative stigma attached to it. It’s kind of like saying you’re handicapped. Being classified as handicapped carries a lot of negative connotations in this society, unfortunately. It’s very difficult to know exactly HOW to classify our problem. Many labels carry heavy burdens.
Great post Rachel. There are so many sides to this issue.
Just found this site and so many comments echo with me. I have candida, which is gluten and addiitonal other restrictions.
I’m a well adjusted, smart person, but to this day i have trouble hearing the criticisms and jokes about our disease not being real, or not deserving of the same seriousness as other things.
I love my body, I love my health. It bothers me that people who aren’t being asked to help in anyway think they have a right to complain or pile on criticism to those who don’t eat bread, etc.
It’s a very tough thing to hear constantly. It’s a very lonely feeling.
I was at a family member’s wedding, and the chef got my order wrong. When I sent it back, the chef could be heard screaming that this was “bullshit” and that he’d already made 1,000 dishes. He was not making a special dish.
I don’t know. I don’t know what the answer is. I know we can’t take it personally, but it’s hard not to sometimes, if you are a felling, thinking living person.
As a person with a disability (cerebral palsy) I’ve been discriminated against for my walking. It’s not my fault I have this. I didn’t ask for it. I sometimes hate it but it is what it is but don’t anyone make me feel like its my effing fault that I have this or that I’m some kind of trash.
It’s the same with gluten. I didn’t ask for a body that rejects gluten. I didn’t ask for anything of the sort. I don’t think it’s fair that I can’t eat safely. And it’s not just me that can’t eat safely either. So I think it’s just plain rude how people treat others just because they are different. I mean who the hell are you to judge me for stuff I can’t control? If its about money guess what I’d pay a little extra for gluten free food served and prepared correctly. It seems companies are missing the point: do gluten free correctly and your butt will make money!
People in general need to start treating folks with respect and that’s what it all boils down too. We are all unique and we need to treat each other with some respect. Take the blindfolds off, step out of your glass house and start respecting because you never know when you or one of your friends or family members is going to be in our position. Get informed instead of sounding like a damn ill informed person and stop with the stupidity! This real grinds my gears. Sorry.
*really
How do you really feel J? 🙂
Love the passion!
Lol thanks! 🙂 it’s one of those days!
I did a blog post back in the fall about this. I had a positive experience with the Silver Spurs Rodeo in Kissimmee, Fl. We had an all day cheerleading competition to attend. I called ahead and got permission from the events coordinator to bring in a cooler. I arrived at the event with her email and was told if they did not comply at the gate to have her called and she would take care of it. Good experience.
I have been to a local zoo where I just asked the ticket man what their policy was and he said I would have to go outside to eat my food. I happened to be with my kids Ziplining out of the park that day, but I’d I ever do plan on going into the park I plan on calling ahead. That statement by the ticket man – sounded very discriminatory to me.
If I ever do.
And I do believe if anyone ever turns me down they will get an ear full.
My family is more than happy to eat their food… But I can not.
Someone I know asked if wearing a medic alert bracelet would help my cause at all when ordering food out or carrying food with me into places.
I don’t know. Maybe! :>).
A diabetic has to carry foods sometimes. Is someone going to tell them they cannot have that food with them ? A celiac has to carry food sometimes too. A person with food allergies has to carry food sometimes AND an epipen all the time.
What do they have in common? They are not considered “disabilities”. They are medical conditions.
So I do not know if we can use “discrimination” as a basis for the argument that our rights are being violated.
Are these people who do not allow us to carry our own safe foods being ridiculous, rude and ignorant? Hell, yes!! But It would be very difficult to prove it is discriminatory.
Consider the following:
“Definition Of Disability (US Equal Opportunity Employment)
Not everyone with a medical condition is protected by the law. In order to be protected…..a person can show that he or she has a disability in one of three ways:
A person may be disabled if he or she has a physical or mental condition that substantially limits a major life activity (such as walking, talking, seeing, hearing, or learning).
A person may be disabled if he or she has a history of a disability (such as cancer that is in remission).
A person may be disabled if he is believed to have a physical or mental impairment that is not transitory (lasting or expected to last six months or less) and minor (even if he does not have such an impairment).”
hmm… well, ACCORDING TO THOSE GUIDELINES, I AM disabled from long unDXed Celiac, but how can I PROVE it?? Carry a doctor’s note with me? Think anyone will give a hoot? they do not know what this thing did to me. How it has made me anemic, weak, in constant pain and in rehab, etc.
Part of me wants to NOT be labeled a Celiac. I do not want it to define me.
Part of me wants the recognition/understanding/compassion that I may require some special consideration for my health condition..
I do not know if I can have both.
Your last paragraph really hits home Irish. Celiac does NOT define me. But unfortunately, it is such a big part of my life. There is a balance in there somewhere.
So I’ve been faced with this many times. I have a lot of friends that tour in the music industry, and I’m always going to shows that last 8+ hours. Because I’m out so often with these people and always at the same venues, usually the venue people know who I am and they’re okay with me bringing my own food, but a lot of venues with tight security that I don’t know always give me flack. I just throw a huge fit – and that’s sad that it’s the only way that it works, but it does. The barking dog always gets the attention, even if they’re the most annoying. I first tell them about my very detailed medical condition, and then if they don’t understand, demand to talk to a manager. I also tell them plainly them with what will happen if they don’t. If I don’t eat, I might pass out and it will make a scene and will have to call security or the paramedics. If I eat something I’m not supposed to, then I’ll be very sick, which won’t be good at all. However, if I’m allowed to bring in my own food I will be safe and I won’t have any issues. I also point out to them that they do not have any options that are safe for me, and that gluten is like poison (if they are not familiar with the issue). I think it’s a lack of education (like the others said) that are the root of discrimination. I bring my own food into all coffee shops and movies – and if they say anything, then I’ll tell them about my food allergies and they’re thankful that I’m still giving them money through patronage 🙂 I hate that sometimes I have to get dramatic about my disease and demand to talk to managers, etc., but I refuse to let this disease get in the way of me living my life. And all these silly corporate policies just don’t have room in it for food allergies or autoimmune diseases, but it’s up to us to make sure that they do! Demand to be heard, and like someone else said, patronize the businesses and venues that respect you for what you have to go through for this life-changing disease! You bet your bum that if I have issues bringing my own food in somewhere (with the exception of McDonald’s in..well, anywhere…YUCK), then I won’t go there anymore. Man, I really wanted to rant about that!
Feels good…doesn’t it?
I had the same thing happen to me at a concert. Had prepared all my food and put it in a cooler in the car. The “guards” at the exit told me that, if I left, I couldn’t come back in. Even after I explained the situation, they didn’t make an exception.
I felt very discriminated against. There was NOTHING I could eat there!
I have learned to put snacks in my purse and eat them “discreetly.”
I had never thought about CD falling under the ADA. I think that’s a good idea, if it does.
I agree with IrishHeart that we have a medical condition (not a disability) and food just happens to be our ‘medicine’. Although it would remove the excitement from having smuggled gfree contraband food, I’ve heard of GI docs who will write an Rx for carrying your own food. Urban legend? Maybe. But it’s not a bad idea.
I do not, however, agree with bringing food obviously from one establishment into another. A little discretion would have probably eliminated the conflict.
Agreed. I mean seriously…McDonald’s??
After I wrote all that earlier today, I decided I AM going to ask my very cool, very celiac-savvy GI doc to write me a “note” saying I NEED to have gluten free food with me at all times so that when I travel, and if I get stranded (as I have in the past) I will get no lip!
All this “scrutiny” around coolers and bags, BTW?— is only because of 9-11 and would have been a moot point otherwise. I brought things into concerts back in the old days that….(but I digress:>) )
Screw this–we NEED to be safe and this is non-negotiable!
I say……Let’s carry “medical passes”.
Someone posted on my Facebook page they they indeed got a note from their doctor.
This is such a tricky question since, as so many people have already stated you can’t see our “disability.” I used to work in the mental health field as a social worker for a private non-profit agency that served abused children, mostly boys (they now have girls in their residential program). When we were getting ready to open a group home in the community just 2.5 miles from our main campus, many people in the neighborhood spoke out against it. We explained over and over how the boys have a severe emotional disability and not affording them the opportunity to reintegrate back into a community before going to a foster home would deny them the ability to make a successful transition into their foster home. The teens we started off in the home were with us for at least 2 years (some longer) and sorely needed a place to practice home to live a “normal” life before any foster home would take them because on paper, their behavioral history wasn’t good.
There is definitely a case for us being considered disabled. We miss out on things we used to do without thought before and what fun is that? Right now, we live about 5 miles from a major amusement park and have lived in this city for a year and a half. We still have not been because the food situation is iffy and we can’t bring food in. We do have the option of going a few hours at a time and bringing food to leave in the car. Last Fall, we went to a Renaissance Festival where we weren’t allowed to bring in food and I had no clue if the food would be safe (there was NO info on the website). We ate a big meal before going and I put some Larabars in my camera bag. My husband tsked at me, but I told him if they ask to look in my bag and say something, I’ll tell them why I have them.
I have not attempted a long event like your reader described in the email, but if I did, I would have done the same thing. Only, I would have made a stink and asked for supervisors. After all, the reader was respecting the no outside food rule and left dinner in the car. Some compromise needs to be made. And there are some places that do allow outside food for day long events. Churchhill Downs in Louisville allows outside food if it is packed in a see through container. I never went to Oaks or Derby after going gf, but I knew I could eat safely by bringing my own food there if I did.
I’d hardly call McDonald’s safe (or healthy), but okay. I think again, there is leeway for compromise and maybe some better planning on the mother’s part. If the host of the party didn’t make arrangements, the mother should have called ahead and talked to the manager about bringing in food and what is and isn’t allowed.
As for flying, and traveling in general, I ALWAYS bring food. ALWAYS! I never rely on being able to find some place suitable on the road or being able to eat safely in the airport or on the place. My husband jokes about the amount of food I pack, but I have NEVER gone hungry when my flight was delayed or safe eating was not to be found on the road.
I think if we take the responsibility and plan ahead (planning is absolutely KEY with this disease and diet), then we can most certainly call it discrimination against a disability as in the first example from your reader. McDonalds, not so much.
Awesome points Debi. Really great.
First of all, love your site and applaude your efforts to write a post a day and for those posts not to suck (the don’t so good job there too)!
I don’t really feel discriminated upon but then again I never ask for permission. I take food in with me if I am going to need it (yes, sometimes there is sneaking involved) because yes I do have a right to eat! If I run into problems at an establishment I just keep going higher up the management chain until someone sees my point of view. It doesn’t hurt that I have a blog and a platform and I do realize not everyone does.But everyone can stick up for themselves, raise the roof when they encounter stupidity and rigidity. In the first situation I would have asked the guy his name, asked for his boss, on and on until I found someone who could use good judgement.
These things aren’t pleasant but I feel that it is our responsibility to raise awareness and educate not just ourselves but for others.
This is an interesting converstaion – thanks for bringing up the topic.
Thank YOU Carol. I do agree that it’s all about speaking with the right person. And if that person does not help you, then you raise a stink.
And yes…sneaking food to events, movies, etc. is totally allowed in my book.
You’d be surprised how much can be jammed into a bra…. :>)
Okay, I’m just gonna leave that statement hanging there–” as is” ….
I agree with Irish Heart! What if we had an official, signed doctor’s note? With an explanation of celiac disease (or severe gluten intolerance) and doctor’s instructions for foods (wheat, rye and barley + a summary of how gluten can hide in seemingly innocent foods), along with food prep environments that are to be strictly avoided in order to prevent potentially life threatening complications from the disease.
Aren’t chronic illnesses covered under the Americans with Disabilities Act of 1990? Celiac disease isn’t an allergy, but a chronic illness–regardless of the severity, it’s not going away! Consequently, I don’t consider celiac disease a defining characteristic of mine, but a special need. And I am deserving of any accommodations that will prevent me from getting very, very sick for a long period of time.
And I also dare the movie theater staff to question my smuggled food and drink. I haven’t tried taking food to a restaurant yet, but I’m only 8-9 months in. I have sat at a table with a friend and not ate or drank anything, though (eating separtely beforehand). I have gotten glutened off a restaurant glass that must have still been a little dirty. Gross and depressing all at once. 🙂
very interesting post. I just posted about our family road trip and how it’s awful to be anticipating starvation or getting sick and feeling like the world is full of idiots.
However, I have a friend who is struggling through cancer. I watch her shave her head throw up, have this weird tingling under her skin that she describes as “ants crawling”. I have been trying to view this type of stuff as MY suffering.
My friend has a disease and suffers. I have a disease and suffer (Better or worse doesn’t matter. Suffering is suffering). I hate that ANYONE with ANY disease has to suffer alone with out compassion and understanding from others, but the fact is we live in a world of idiots.
I didn’t really understand cancer until I knew a person who lived with it (as with many other health issues). It’s the same with situations. People have NO IDEA!
I think the only thing we can do is keep learning about it ourselves, surround ourselves with people who care, and realize that we will suffer.
But don’t get me wrong, I still want to beat the crap out of the jackhole who just doesn’t get it 🙂
Wow! Love this post stream. Would u believe I searched especially for this after the owner of my favorite Tex Mex drive through restaurant told me never to return after I asked for my order to be remade because I suffered a gluten reaction from it. My feelings are so hurt because I’ve spent anywhere from $20 to $100 per month there over the past 2 years. I’ve only had to return my food 2 times because of gluten contamination, so imagine how my jaw dropped when the owner told me he couldn’t “afford to feed” me any more.
Wait, did I mention that they specifically advertise many of their menu items as gluten free? It’s not like I’m going to a Wendy’s or Chick-fil-A and holding them to unreasonably high expectations. Did I also mention that I’m a discrimination defense attorney? So I’d NEVER even dream of suing a retail restaurant, cause that would only make them even more wary of celiacs.
The real problem is the teens who have (albeit rarely) prepared my food carelessly and somehow introduced some gluten. What do I have to gain from bringing back a nearly full order of food, just to have it replaced with the exact same thing? Stupid business owners like this fail to realize how much profit they have made off loyal Celiac customers like me, and how little it actually costs them to remake an $10 order of GF steak nachos because of their damn error in the first place. Especially since they buy in bulk. Let’s see: small bag of chips – 65 cents; 2 scoops of beans – 50 cents; 4 strips of steak – $1.25; $2.00 extra side of 2 small shrimp – 75 cents; Mexican cheese – 75 cents; sprinkle of pico, dollop of sour cream & guacamole – 75 cents. I’m no math pro, but that’s roughly $5 in food costs & $5 in profit. Based on my spending habits, this jerk is refusing a monthly profit of $15 to $50 from me over FIVE LOUSY BUCKS!?!? Seems to me that he can’t afford not to remake my food, and his frustration is better spent on training his staff to adhere to proper food handling procedures so they lived up to the term “gluten free” printed all over the friggin menu board.
And for those of you who may think, why did you take the food back (?) Id just like to remind you that we Celiacs have average grocery bill that is roughly 200 to 300% higher than for comparable gluten laden products. Should I have been willing to throw $10 in the trash because some pimple-faced 15 year old line cook screwed up my favorite dish that is usually yummy & doesnt glutenize me?
Apparently the restaurant owner thinks so. SMH!
Unbelievable GadgetGirl. I have no words. Just one heavy sigh.
I recently traveled to Italy and the flights were unbearable. I had an 11 hour flight to and from Frankfurt in which there were no GF meal options. I checked it out ahead of time and called the airlines. I had to bring snacks. Still, by the time I arrived in Venice, I was weak from hunger. The flight attendants acted as if I was making an unreasonable request when I asked if there was anything that I could eat. They weren’t willing to make any allowances for me and they didn’t understand why I wasn’t thrilled by the suggestion of an extra helping of salad.
Considering the flight had diabetic, vegetarian and low-carb options, I did feel discriminated against.
Totally understood Doro.
When I last traveled by plane and was worried about carrying my food through security, I did have my doctor write me a letter explaining that I have celiac disease and an endocrine disorder that makes me prone to sudden hypoglycemic attacks. (That is, if I don’t have ready access to safe food, it’s going to be a scene. And there’s no safe food for me to buy at the food court.) I was very glad to have the documentation and do think it helped. I also wear a medic alert. It’s mostly for a different medical condition, but I think having that on my wrist also adds credibility.
I’ve been diagnosed for 10 years, and have gotten a lot bolder in that time about pulling my own food out at cafes and restaurants. Usually, I just have to explain that I have celiac disease and am also allergic to dairy, soy, nuts, citrus and nightshades. I emphasize that I can get extremely ill and my throat will even swell (for the allergies). “Severe” and “serious” are good words. The majority of the time, they just look relieved that I’m not asking them to feed me, as long as I purchase a drink.
As a side note, the weirdest situation recently wasn’t from the servers at a coffee shop. It was from the friend I was with. I’d discreetly brought a small snack and a travel mug with some safe “milk” from home for the coffee I bought there. I explained my situation to the servers. They didn’t care. Later, my friend told me she didn’t want to have coffee with me again because I “even” brought my own milk! And she knows about the celiac and allergies. It was too “weird” for her. Sigh.
As for these situations that people are talking about here–leaving the issue of McDonald’s aside–of course it’s discrimination against those with a serious medical condition. There’s no other way of putting it.
None of my business I know, but tell your “friend” she is not a good friend. Geez.
A note for people with small children: the amusement park Sesame Place has limits on the size of the cooler you can bring into the park — unless you tell them that you have food allergies, in which case you can bring in whatever you want. Yay to them for getting it right!
My husband has both celiac disease and is a bottle diabetic. We recently went to a water park and he brought a small cooler with some gluten free rice krispie treats in it. He was told he had to leave it in the car. We explained the situation but they said no food was allowed. I expressed my concern that my husband had to have snacks in case his sugar went low ( all he could really eat at the park was salad– not much carbs there) and that all of the other foods they offered contained gluten. A police officer stepped in and said if he gets low we will stamp his hand and he can walk to the car and eat. I explained that my husband has been a diabetic for 35 years and can no longer easily tell when he is low until it is too late and that when he does get low enough he is prone to seizures. The police officer stated that he has seen this many times and that there would be plenty of time. The manager eventually came out and allowed him to put his cooler in the office and said he could come by and eat whenever he needed it, but I was very disappointed. I understand that they want to make money– but they offer little to nothing for diabetics and even less for celiacs and he has both—but I feel they were discriminating against my husband. Asking a diabetic to take a ten minute walk when they are low is ridiculous! I wonder if this situation falls under the american disabilities act.
Frustrating Marti…so frustrating.
I’m attending the MixTape Music Festival in Hershey, PA this weekendThe doors open at 3:30 and the concerts last until 11. Yesterday, I ate lunch before I left, ate a banana before I went in, and sneaked in a protein bar, which I ate shortly after the concerts started. At about 8PM, I was hungry and getting a headache from my glucose levels dropping. I went in search of food thinking surely someone would have grilled chicken, fruit cups, or even a fruit smoothie. No, the best option I found was a chicken quessadilla (which is still super high in fat and calories). I talked to someone about bringing in my own food because they don’t sell items I can eat. I was told I would need a signed note from my doctor. I’m not allergic to gluten but I do have severe digestive issues with many foods, largely those high in fat and grease. Plus, I’ve spent the past 3 years working to lose a lot of weight. I’ve trained myself not to put that crap into my body and refuse to let a little 8 hour concet set me back. So, they didn’t get my money. I just sat there and felt like I was going to pass out all night. Keep raising awareness about these issues on social media sites. They’ll eventually have to cave and start offering healthier options. I’ll also get a note from my doctor before I go to any events in the future!
If I want to bring in fruits and vegetables (which they don’t sell) to an event, I should be allowed.
I think one of the saddest statements in your comment is the last one. Why don’t venues sell healthy items like fruits and vegetables??
I went to the F1 Grand Prix in Italy. While they didn’t have much to offer they did have fruit cups! Add to the fact it was pretty warm and the fruit cups were truly the perfect thing for me. Breakfast was a cup (all the place I was staying at offered cornetto which is an Italian version of a croissant) and so was snacks and lunch (too much fruit maybe?) but supper… There was this restaurant down the road and I had the most amazing things there.
In a way we are generally lucky in South Africa as they don’t check your bags for food at the movies and if you go to a sporting event you can bring a cooler – so long as everything is plastic, no glass or metal – including cooldrinks, no alcohol.
I always have something to eat in my purse. I can discretely eat it if necessary – enough to tide me over.
Once we attended a presentation that was held in a hospital cafeteria. We thought we could grab a bite to eat if we arrived early enough. There was nothing on the entire line that was safe for me except a pretty ho hum salad (lettuce and purple cabbage and tomato), and then I didn’t know if any of the dressings were safe.
This hospital does presentations frequently, one of which was given by a dietitian. I pointed out to her that even the hospital does not meet our gluten-free needs.
Most people are ignorant until it hits someone in their family. I think educating the public is key. I avoid eating out. When I do, I eat ahead and order a salad. I often take my own dressing. I keep something in a small insulated lunch-size tote in the car. When I am ready to go in, I slip my dressing into my purse. (I put enough for one salad in a small container at home.) I also take veggies or a sandwich made with GF bread if I’m going to be out all day especially if people will be eating. I slip away to have my meal and enjoy the company of the rest of the group (taking pictures, chatting).
Even when restaurants are accommodating, I am hesitant to eat due to cross contamination issues. If you have ever been in a restaurant kitchen, you know how easily cross contamination can happen. The risk of eating a meal away from home is not worth being sick. Covered dish dinners are also difficult. We do them frequently at the church we attend. Well meaning friends bring something that is gluten free and let me know that they brought something for me. Scary since they don’t understand the cross contamination issue. Then there are those who borrow the spoon or fork from the gluten-free food and use it in the dish next to the gluten-free food – and put it back. I try to get near the head of the line and eat only what I brought (unless there are sliced raw veggies or fresh fruit).
I do miss the convenience of eating away from home, and it is no fun to watch other people enjoying and discussing the things I wish I could have. Life is not fair; we have to learn how to live our lives to the fullest in spite of the hand we are dealt.
I have what is probably a rather unique perspective on the whole situation.
I have Celiac, and I am a line cook. I work the saute station at a private club where we do both a la carte and catering events. It is not an ideal situation, but my goals when I started in this industry didn’t include going gluten-free. Obviously, in my situation this could be considered a disability. It is a challenge to say the least, but I try (and it is not always easy) to educate my co-workers about what I have to deal with, and why some things that seem like they should be fine for me to eat, are just not ok. (French fries from a shared fryer? No.) Fortunately, the chef I work for gets it, and is able to help me out when I need it. I can season food by smell better than a lot of people can tasting it! I still have him check things if I am at all uncomfortable, which is 90% of the time or more. Cooking and baking from scratch in a restaurant doesn’t make it more likely that you will not get sick.
Of course, there are a number of issues to deal with here.
First thing there is a LOT going on in a restaurant if it is busy, and the people who handle your food are busy. To make a gluten-free meal in the middle of service requires nearly stopping everything you’re doing. This is particularly the case if there is not really a gluten-free menu. I know there are several things I can make gluten-free on my station with no problem, but I can’t just do it. It will be a little different from what everyone else gets, but that prevents cross-contamination, as much as possible.
The second thing is that there are a lot of people involved in making your food. I may get it, but I can’t verify that the dishwasher wasn’t eating a cheeseburger at his station. (Which he shouldn’t be doing. That is of course a different issue altogether.) He handles your plates before I do.
Flour gets everywhere, and I try not to work in the area that our flatbread is made in, just because I don’t want to accidentally ingest it. Does the flour end up in your food? I don’t know.
Here, I guess is the question you should ask me… Do I eat at the club? NO.
I bring my own food, and do my best to keep it out of the line of production. The kicker is that at least some days, my job is to make the “family meal”, meaning food for the staff. It is considered a benefit for the employees by my company. Is this discrimination? I don’t know, some days it feels like it. Other days I am just glad I have a job, and people who are willing to help.
I was having nasal and sinus surgery, it was my first surgery since my diagnosis. As a nurse I should have thought to bring something to the surgical center but I forgot. After my surgery they refused to discharge me or give me oral pain meds until I ate something and of course they only had crackers. Even when my Mom promised to feed me as soon as possible after discharge. Luckily there was a grocery store near by that had gluten free crackers and my Mom was able to go get some.
I have a child that was just diagnosed and I have been EXTREMELY lucky that we haven’t had issues yet. Our doctor did give us a “medical pass” note stating that she has a medical condition requiring safe food to be provided to her and/or for her to have her own food provided by mom/home. So far we haven’t tested this with anyone but the public school she attends and they’ve been amazing! They have no problem informing me of “special” events like hot cocoa and cookies on pajama day so I can send hers to match etc. We are still working on figuring out special food with school meals so I’m not sure about this but I know they are considerate thus far. There are things online you can search (at least for school children) on 504 plans and IEPs for medical conditions. This can be a great help. They have made exception for her to have additional juice to replace the milk she can’t have for lactose intolerance (doc ordered as well) and also for her to bring her own breakfast from home to eat at the cafeteria with her class (not normally allowed). I wonder how much of the accommodation to our situation has been because she’s a child? I hope people get educated so celiacs can live a better more normal life.
I think this post really needs to be resurfaced again! What a great discussion on the subject! I know I always pack goodies in my purse when going to a restaurant/outing where I won’t be able to find safe food (beyond a bag of chips). I really don’t think this woman should have been hassled for bringing in competitors food – it’s a disability and while I agree that restaurants don’t like it when you eat competitors food, there was nothing there for her child and it’s not fair for them to be left out. Especially for a child, it’s hard to feel involved and included when you get a bagged lunch and everyone else gets pizza – picking up McDonald’s, while it wasn’t the healthiest choice, was the choice that would make the child feel the most included (they get a special meal too).
I do feel for a number of people left without food options, but it is also our responsibility to work within the event guidelines. For a number of years I’ve been going to a local music festival that does not allow in-out privileges. They don’t allow in-out for safety reasons, which I believe would override the food allergen restrictions. How to they know you’re not going out for illicit purposes? That’s the hitch with having a non-visible disability. That being said, every year I pack snacks and sandwiches in my bag. The first year they were confiscating all outside food, but when I got to the front of the line and said ‘celiac’, they immediately let me know I could bring in my own food. The following year I was allowed to bring in food and a few vendors even offers gluten free options. It’s all about working with the system to get the least resistance.
I hope this isn’t going to sound insensitive because that is not my intention, but I feel there is a discrimination against certain food allergies vs others.
Our school has been declared nut free due to some students’ nut allergies. I get this, I respect this. However, it’s starting to feel like the gold standard of food allergies.
Yes, I understand that nut allergies are serious business – no one is going to argue that anaphylaxis is not deadly. I have not and will not send peanut butter or any other nut containing products to school. BUT, the school is so accommodating to the nut allergy that all other food related issues seem to be inconsequential.
I am not saying that all schools should be declared vegan, but perhaps some respect, understanding and accommodation should be given to Celiacs, lactose Intolerant, and other allergies.
I sit on a parent council at our school and attend monthly meetings. The council puts on a monthly birthday lunch. The birthday lunch is always pizza. We have a chain very close to the school that offers a gluten free personal size pizza (celiac safe) and I asked about the possibility of offering this as an option.
I was shot down from every corner of the room – “why should everyone pay more to change pizza suppliers because of one kid?” “Some kids will just have to do without, they will have to live with it” “It’s extra work to get the GF pizza”. Then they proceeded with a 20 minute discussion on where to find 100% nut free cupcakes for this same lunch event.
In that very moment I discovered that all allergies are not created equal.
Who said anything about making all of the parents pay for gluten free pizza for one kid?! What would be so wrong with going to buy pizza for the one kid with Celiac Disease at the chain that provides GF options and let the rest buy from the chain they’ve always bought from? Let’s not turn a simple thing like that into rocket science and do a senate debate on it!! People need to settle down.
But to Marti’s post: from a Health Care Professional’s viewpoint, when someone with Diabetes has very low blood sugar, they need the sugar immediately and making that person walk to their car to eat their own food IS hazardous (they’ll likely use more energy that they really don’t have and the park authorities might need to dial 911 before too long.) Park management need to re-think their policies on outside food when their customer base includes people with Diabetes and/or Celiac.
And for EJ: With “friends” like that, who needs enemies? If she felt too embarrassed about your bringing your own milk and such when you go out for coffee, she’s probably too toxic. If she’s going to weird out over your bringing safe dairy products, she’s the weird one. Best to cut your losses with her and move on.
Thanks Christine. I agree about the “friend.” The saddest part is this is someone who works as an educational consultant, working with schools around the world. She sees herself as a very caring, open-minded and progressive person, but she has absolutely no understanding when it comes to people with medical dietary issues, no matter how I’ve tried to explain it to her. It’s perplexing. But you’re right, who needs that toxicity.
It is worth mentioning too that part of this “discrimination” is due to legal reasons. One of many reasons you are unable to bring food into establishments which serve food if because they become legally liable for any food relates illness you may contract or any other misfortune, which is not in fact their fault as they did not prepare the food. Another reason is that event locations rely on vendors, not in house catering or food services, to provide food. In the legally binding contracts they sign they often agree not to allow I’m outside food. If they do they are liable for breach of contract. While it is extremely frustrating that venues and restaurants can be inflexible and sometimes rude in the end they are often tied by circumstances far outside their control.
I was diagnosed with Celiac in when I was in high school. When I went to discuss a gluten free option with the head of the cafeteria they had the gull to tell me that because I wouldn’t die on their door step they were not going to even attempt to help me. But with in the next 2 years we would be a nut free school. So I had to bring lunch everyday and God forbid if I forgot it, they would provide me with one of their peanut butter sandwich.
It wasn’t much better when I got into college, at least they told me up front if I wanted gluten free food than I would have to eat off the salad bar for every meal (yes there were/are croutons everywhere) so instead of attempting to accommodate me they stuck me in an on campus apartment and because I went through the disability office they could only give me a roommate who could accommodate me but because of the privacy laws they couldn’t tell them what my disability was so they never did find me a roommate, so sometimes Celiac has its rewards.
Ok let me start with Dude – you and your blog here have made my year!! As a non-Celiac Gluten Sensitive diagnosed 14 months ago your blog has literally reminded me that I am not alone in all of the feelings and crazy emotions that I go through when leaving my own home.
That said the discussion on this post is especially amazing! In the last year, I have spent much of my date nights, girls nights, and work events educating the ignorant. I agree that while Celiac (generalized to all gluten sensitive) is not necessarily a disability, it should be considered a medical condition and accommodated as such.
I have had some success with gluten free menu options at chain restaurants. There is always the risk of cross contamination so I found an over the counter product called Gluten Cutter that minimizes my reaction to small amounts of gluten. I’ve been lucky (there’s got to be angel looking out for me when it comes to food) as not a single restaurant has given me any crazy flak about my special requests for changing gloves and thoroughly cleaning stations, etc. I even lucked out (with the exception of bland tasting food) with the hospital where I birthed my son just two months ago.
So while this mom didn’t make the necessary accommodations for her child and then the concert venue refused to make an accommodation, there is a component missing in both cases: communication. I have always called ahead to new places, checked their website and have spent time on the phone with corporate entities when necessary to ensure that I will be able to eat and I’ve done that as far in advance as possible. I try very hard not to show up somewhere and not have asked the important questions in advance. I have had friends change and cancel reservations because I’ve told them it was going to be risky eating somewhere (cause I have awesome friends!). (Not to make a giant plug but Red Robin and a newer chain called Not Your Average Joe’s (east coast locations and still expanding) have been the most accompanying – Joe’s actually has the kitchen manager babysit piece of the meal through the kitchen to avoid cross contamination and the manager even brings it out to the table with gloves on!)
I have yet to try any all day events where there are no accommodations and I give them props for trying but the reentrance policy (and was probably listed on the venue website) would be something that would have come up had they called in advance to make arrangements for food. So again, communication and a reminder that you are your own best advocate and educational instructor for public knowledge.
In response to an earlier comment about not going to the places that don’t have gluten-free options. Sometimes if you want to be with your friends and family, you have to go to these places. If I only stuck to safe places, I’d be at home. I am so sensitive and have sacked too many times by places I trusted that I don’t chance it anymore. It is not worth months of agony. That said, in the case of travel, I carry a note from my doctor that says I am on a medically necessary gluten and dairy free diet. I am thinking I should also carry this when going to events. However, most (not restaurants) places that I have called ahead of time and explained the situation to, have allowed me to bring my own food. I think the trick is planning ahead – call and talk to a manager first thing in the morning. We can’t just show up and expect them to accommodate when they are overwhelmed and busy.
Is mug root beer gluten free?????
I dont think celiac is a disability. I dont feel like I am unable to do things. BUT they should allow us to bring our food.
I went to a restaurant with friends for lunch. I decided to buy a coke (the only thing I trust), so it wasn’t like if I came and buy nothing. While buying it, the staff told me that I should go outside to eat my lunch and wait my friends, even if I bought something, “because there are lots of people eating here for lunch”. They also told me that if I choose to stay, they would come to take me out if there were too many people. I didn’t know if I had to yell or to laugh.
In fact, I didn’t even answer what they said and went to sit at my friend’s table. I didn’t even explain anything to them, and I stayed no matter what : firstly I bought something there even if it is just a drink, and secondly I dont feel like I have to justify the fact that I want to eat with my friends but not able to eat what they cook. I don’t think that I have to justify my behaviour to stupid people who dont ask why but tell you to leave without concern. You think I shouldve say something? I dont. I dont think that I have to say every time I eat “yes, I am sorry but I have celiac disease so I cant eat what you cooked, but I bought what I could find that is ok in your restaurant (which means a coke)”. I dont want to explain everytime because first I am not sorry, I dont have to apologize for my disease, second I DONT HAVE TO TELL EVERY ONE AROUND THAT I HAVE A DISEASE, and third it is not only that I just cant eat their meals : I dont WANT anymore.
I dont want either every restautant to be obliged to serve a gluten free option : because then I would have to eat it, almost praying god that they know what they are doing, knowing that there are SO MANY chances that they dont know how to chose gluten free aliments (what??? Your rice isnt labelled gluten free???? You want me dead? Sorry? The fries are just naturally gluten free?), so many chances that they dont know how to cook, prepare and serve a gluten free meal. And so many chances that they sell it with awful prices. If they all have to have an option then I would have to try, and not having the chose anymore. Personnally I dont want to take any chances with the disease, right now I just want to eat MY food and to find out how it feels to be healthy.
But it isnt because they’re assholes that celiac is a disability. But an issue for discrimination, yes it is.
I’m looking for some guidance on how to deal with Celiac in the work place.
To preface the discussion, I will say that I was open to my manager and team about my allergy to avoid any awkward encounters if I had to deny food in any social work setting. Recently my manager has said that I am ungrateful for the team’s efforts in going out of their way to make sure I have food options when we do lunches. In the most recent case my manager brought in desserts and made some for me gluten free. Apparently I gave off an attitude that I wasn’t thankful. This sparked a discussion by my manager saying that she will never make an effort to accommodate my food needs because I don’t seem to be grateful. She also mentioned that I take too many sick days.
I will say that I never have asked to be accommodated at work. I have been fairly easy going and in some cases have felt afraid to speak up that I can’t eat something and eat it anyway in fear of coming off as rude. I always take responsibility at work lunches to bring my own or ask the person who is coordinating the lunch what is being served to see if I can order anything.
I’m left feeling very stressed and constantly judged by boss on what I eat. What is the right approach here? My plan is to tell her I am no longer comfortable discussing my medical condition with her and leaving it at that. Do I provide HR with my medical records saying I have Celiac. What are my rights? How do I protect myself?
I disagree. Yes they can prepare ahead of time and go out of their way to find extra food or bring something that costs much more. But should they have to is the question.
People with celiac disease already face so much. Even just the fact that he can never have pizza hut pizza again and has to be the weird kid eating something else is hard. Let’s just be honest.
So should the world open up and be more accepting and accommodating of people with all kinds of illnesses? The answer is a resounding yes!!!
The family could have gone out of their way and done many other things themselves yes. And you seem to be saying that this is how it should be in this world. You have an illness so you take the time and pay the extra and be the weird kid.
But the truth is, it would not have hurt this pizza hut to let this kid come in with his needed gluten free food. (No not debating mcds for gluten free)
This is a medically prescribed diet. It’s not just a fad or a food preference.
Yes, I do want to live in a society where people consider others. This kid has to go through enough with celiac already.
Now there is a big scene because the pizza hut won’t let him come in with the food he can eat.
Yes I want to live in a society where we consider this kid. And what he deals with dialy. And how there are already things no one can do anything about like the fact that he can’t just chow down on pizza hut food ever again.
So what is wrong with showing a little kindness?
I’m a little shocked at your response that they should have to run around and take care of things themselves and it’s ok that this pizza hut wouldn’t just let him come in.
I hope I’ve misunderstood what you are saying. If not, then yes as a society we do need to do better. We do need to consider others. It takes no skin off our backs to be nice. But it would mean a lot to the person receiving the kindness.