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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Why Are People So Insensitive?
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So i found out i had celiac back in august and have been gluten free since then. For the most part, i haven't had trouble finding gluten free food, nor do i miss/feel envious of those around me eating pizza/bread/pasta. It feels so great to not be in pain, that i don't mind doing the extra research to find food that i can eat.

this past week, I had my first emotional breakdown. i was at a large work conference with all buffet-style meals. I felt like a high-maintenance brat asking the chefs about the food, but they were pretty accomodating. Everytime I asked though, 6 people around me wanted to hear all about celiac and how i found out. It was getting exhausting... the kicker though, was dinner the last night. There was NOTHING available for me to eat. The waitress said she could bring me a side garden salad (the buffet for everyone else included baked chicken, this awesome looking penne, bread with dipping oils, potatoes, vegetables, orzo salad, decadent desserts). I started to get a little jealous.... "why do i have to worry about this when i should be networking and having fun? This isn't fair. i'm hungry and i want more than a side salad" ..... When the waitress brought my lovely garden salad, at least 4 people came up to me (who had already known about my celiac, but clearly forgot)... pouting "HOW DID YOU GET THAT SALAD!? I requested that and they said they couldn't do it. Not fair! Can i have some?!" as they walked around with their plates filled with great glutteny food. I seriously went into the bathroom and cried like a little baby. I hate feeling sorry for myself, but i did. .....Someone who has had this for a while, please tell me this goes away.

I do feel like i'm learning with every tough experience though (ie they brought the salad on an obnoxiously larger plate than the buffet plates, so it drew attention to me. I will forever transfer special food onto the regular plates that everyone else is eating off.... i never would have thought about this before).

Anyway, this was the saddest i've felt about this and i guess i just wanted to vent. If anyone has suggestions for these types of situations (beyond stalking the chef and being high-maintenance which i will continue to do and despise doing), please let me know. Its also tough to bring my own gluten-free snacks in these professional situations... only a few things are portable and it just sucks watching everyone eat all this great food while i get to eat an apple bar.... it also draws more attention to me which i don't want. This just wasn't fun. Thanks for listening.

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I went gluten-free a month before you and I haven't had this situation yet but I've thought about it. I think it must have been so awkward for you to be talking about your private life when you were networking and socializing professionally. :/ I had a friend who'd gotten sick and discovered celiac when I was working and everyone (including me) asked her SO much about it. (it wasn't until I got sicker with what I NOW know is celiac did I realize it's poor form to be so nosy because I didn't want to share so much myself. So ironic that all these years later I've got celiac myself and I continue to think it's impolite to be so nosy lol.)

Anyhow. I guess it's nice they're so concerned and that you were able to get a special salad (those folks were a little impolite to be all over you about it), and we're supposed to smile gracefully and joke about being "high maintenance." That was kinda my plan. It's not a bad thing-- it is what it is.

Definitely bring snacks. Lots of snacks, and a selection of things in case you have a craving or end up being extra hungry (or a planned-ahead gluten-free option doesn't work out). I LOVE Justin's nutbutter packets, Lara bars, cashews, and dried cranberries. Also I found these delicious oskri chocolate covered coconut bars that make the BEST desserts.

Btw, Don't transfer your food to another plate. You won't know if the new plate is cc'd.

This is a HUGE life change. I don't feel bad passing up food I can't eat because I love feeling better too, but food is such a huge part of our culture, there's a lot more meaning behind it than nourishment. (in your case it's tied to your relationships with your colleagues!) it's okay to be sad for this change, and accepting it is more than just changing our diet. It's about navigating all of life differently, really. It's okay to feel bad about it sometimes.

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Thank you so much for your reply :) ..... i have been a huge fan of raw cashews, almonds, dried cranberries etc.... i'll have to look for the nutterbutter packets and coconut bars.

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So i found out i had celiac back in august and have been gluten free since then. For the most part, i haven't had trouble finding gluten free food, nor do i miss/feel envious of those around me eating pizza/bread/pasta. It feels so great to not be in pain, that i don't mind doing the extra research to find food that i can eat.

this past week, I had my first emotional breakdown. i was at a large work conference with all buffet-style meals. I felt like a high-maintenance brat asking the chefs about the food, but they were pretty accomodating. Everytime I asked though, 6 people around me wanted to hear all about celiac and how i found out. It was getting exhausting... the kicker though, was dinner the last night. There was NOTHING available for me to eat. The waitress said she could bring me a side garden salad (the buffet for everyone else included baked chicken, this awesome looking penne, bread with dipping oils, potatoes, vegetables, orzo salad, decadent desserts). I started to get a little jealous.... "why do i have to worry about this when i should be networking and having fun? This isn't fair. i'm hungry and i want more than a side salad" ..... When the waitress brought my lovely garden salad, at least 4 people came up to me (who had already known about my celiac, but clearly forgot)... pouting "HOW DID YOU GET THAT SALAD!? I requested that and they said they couldn't do it. Not fair! Can i have some?!" as they walked around with their plates filled with great glutteny food. I seriously went into the bathroom and cried like a little baby. I hate feeling sorry for myself, but i did. .....Someone who has had this for a while, please tell me this goes away.

I do feel like i'm learning with every tough experience though (ie they brought the salad on an obnoxiously larger plate than the buffet plates, so it drew attention to me. I will forever transfer special food onto the regular plates that everyone else is eating off.... i never would have thought about this before).

Anyway, this was the saddest i've felt about this and i guess i just wanted to vent. If anyone has suggestions for these types of situations (beyond stalking the chef and being high-maintenance which i will continue to do and despise doing), please let me know. Its also tough to bring my own gluten-free snacks in these professional situations... only a few things are portable and it just sucks watching everyone eat all this great food while i get to eat an apple bar.... it also draws more attention to me which i don't want. This just wasn't fun. Thanks for listening.

Venting is always good - whenever I'm feeling down I always come to this site and usually cheers me right up. Just knowing that you're not alone is always helpful - and quite easy to forget.

People are insensitive simply because of the fact that they don't take the time to put themselves in your shoes. That along with ignorance are two of humanity's biggest flaws.

The only advice I can give to try and avoid that situation again it to plan, plan, plan. And then plan some more. The annoying questions may not go away, but at least the hunger will.

If there is a Whole Foods or some other Health Food store nearby you could pickup a frozen gluten meal. Or make a sandwich before hand and just bring it.

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I had a somewhat similar situation just last week. Two days in a row at work I was *really* going above and beyond because of other people not being there do to their own jobs (and NO ONE else in the place did a damn thing!). And then on the second day, mid-afternoon, the manager on duty came in with a huge stack of pizzas to 'thank' everyone. I had to take a few minutes, go to the bathroom and cry and call my husband. And I'd been having a REALLY great day prior to that event, but it pretty well trashed my whole day. Then I didn't sleep well that night because I was so worked up. I was wiped for several days because of that ONE moment of insensetivity. You are definately not alone!

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I can relate even though celiac isn't my problem. I do have food allergies though. But years ago when I was working, I was on a weight loss diet and also a vegetarian. Thankfully I didn't have to have many catered meals but I did have them a few times a year. Invariably there were donuts, muffins and bagels in the morning. Lunch was either sandwiches with meat on them or pizza. Never a salad. I just learned to bring my own food. Yes, I know if I had eaten meat in those days it wouldn't have hurt me. I just really felt better if I didn't eat it.

These days it is eggs I have to watch out for. I am allergic and they make me very ill.

My daughter has the gluten issue. And we got a bit upset at dinner tonight. We went out to eat at a restaurant we know is safe. Normally she has grilled chicken breast there but since she had chicken for lunch, she wanted something else. She had ordered cottage cheese and pears. The waitress came back said she couldn't find the cottage cheese! She was going to bring the menu back. Well no need for that really because we already knew what limited choices there were. Thankfully the waitress found the cottage cheese!

People just really do not understand though. I remember commenting once that I didn't know what I was going to feed my daughter between recitals. In those days she didn't like to eat the gluten-free bread unless it was freshly microwaved. The other mom said they normally sent out for pizza. So she said, "Well can't you do that? Can't you make an exception this one time?" I was like... "Well... Yeah! If I want her to sit on the toilet and totally miss the other recital!" I can't remember now what it is that I brought her to eat. I think it was something in a thermos that wasn't too messy. Thankfully she has decided now that some gluten-free bread isn't too bad and she also likes Teff wraps.

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If you find that explaining celiac to others difficult you could tell them that you don't feel comfortable discussing your health with stangers.

As for the conference did you tell the chefs/people running the conference that you needed a gluten free meal before you arrived? I wonder if they could have adapted more if they had more time to prepare. If you asked for a gluten free meal at the beginning of each night they can only react with what's on hand. If they knew they had to have a gluten free meal in advance they might have been able to do more than a salad.

I also suggest bringing treats that you can have to events like this. I find that I have a snack or treat that I can eat I don't feel as bad about what others are eating. For the next conference could you make a batch of gluten-free cookies or brownies and bring them with you? Then you could bring one down with you to the meals or wait until you get back to your room. I find that I need the instant treat and that waiting doesn't help.

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As far as I empathise with the anger and sheer frustration I think until you or your family have gluten issues then it doesn't sound all that bad if you don't know the work involved in maintaining a gluten-free diet..."I mean you just have to avoid gluten right?!"...so although I am equally frustrated by people's lack of due consideration I can understand it at least. I really can't say if I was on the other end of the glass that I'd be any different and I don't think of myself as a particularly uncaring/inconsiderate person.

I think charities see examples of this the most, as soon as someone high profile is affected by their cause then all of a sudden they want to drive it forward and highlight it to the world but where were they up until now. I think that's what it needs for celiac; a few high profile cases a year alongside the lovely patrons of this forum to drive demand and where there is demand business will bend over backwards to provide products and services to make a celiac's life easier. Undiagnosed celiac or gluten intolerance, as well as doctors blindly diagnosing CFS, is probably a big barrier to this but I'm confident over time we'll get there.

The more and more people around you know the full story the easier it will get for ya, but I agree with Gfresh404, venting here is a good outlet in that bedding in period. There are plenty of helpful people here to give you advice and support.

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If you have a situation like this again, call ahead and make plans with the manager of the place. They could've made you a gluten free dinner if you called ahead but the night of, all the food is prepared in an assembly line and they can't cook something new.

When people ask, I never feel like they're insensitive. It's a chance to educate them. I can't even count how many times people have asked me about my food and then someone says they think they might have celiac and they will go get tested. Usually it's strangers, but there are a few instances where I found out later they did have celiac or they went gluten free and felt better.

There are coolers that look like a purse at Target and Costco. Get yourself one so you can discreetly bring food with you. There are also these things called Mr. Bento by Zojirushi that can keep a meal hot for like half a day. They sell them on that site we can't mention. The Miss Bento is the smaller one. It can fit into a large bag of some sort. If you really feel the need to eat secretly, go into the bathroom or take a little walk and grab a snack.

I know how you feel. We all have those moments. But it goes away and we cope later. Hang in there!

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Yes, the feelings eventually go away. I've been gluten-free over five years now, and the only time I get upset is when I specifically arrange for gluten-free and it doesn't happen. I go to buffets and social functions assuming that if I haven't made arrangements for gluten-free food there won't be anything to eat.

In professional situations, you'd be surprised how much food you can stash into a briefcase or an elegant leather messenger bag. Bananas, larabars, string cheese, bags of dried fruit and nuts, gluten-free jerky, or even a peanut butter sandwich.

As others have said, it's best to call ahead and make arrangements if you won't have any options but eating at the conference. Talk to the conference organizer first, and if that doesn't work, talk to the venue holding the event. Gluten-free is not uncommon any more, and event organizers are already used to special diets from people who are strictly vegetarian or have food allergies. You may feel "high-maintenance" but it's really not that big a deal.

I find that people who press me about celiac suspect it for themselves or a family member. In a professional situation I tend to be brief with my answers and change the subject anyway. In a social setting, I answer as many questions as they care to ask. Three of my friends have figured out food issues from information I shared with them.

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There are also these things called Mr. Bento by Zojirushi that can keep a meal hot for like half a day. They sell them on that site we can't mention. The Miss Bento is the smaller one. It can fit into a large bag of some sort.

I don't have much to add, but I will say that this system is amazing!! It's pricey, but it really does keep your food hot a long time. I took mine to London and used it on the plane, at the park, in a pub, at the zoo, etc. I even had a flight attendant ask me about it and say that it was the neatest food system he'd seen. I went directly to their website to decide on a size/style and bought it on the site we can't mention.

Also, there are ways to cook in your hotel room if need be. You can get an electric hot pot for pasta, grits, or anything you want to boil. I also love my tiny George Foreman grill. I used it last weekend in a hotel room to cook polenta (the pre-made type that comes in a roll) and hamburger meat and to reheat leftover veggies.

It's just nice to have back-ups if you find you can't eat out.

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I also bought little ice packs that are about 5 x7 inches maybe. If I don't want to drag my whole purse/cooler thingy along I will make a sandwich on gluten free bread and wrap it in foil. Then I place the foil wrapped sandwich and the ice pack in another larger piece of foil and wrap them together. I can just drop that in my bag and the sandwich stays cool.

I have always had good treatment when I've called ahead for buffets and such.

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It does get a lot better. You're doing great and it's only been a few months for you. I've been gluten free nearly a year and a half now, and I feel so much better about these kinds of situations now. Hang in there - this too shall pass :-)

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It does get a lot better. You're doing great and it's only been a few months for you. I've been gluten free nearly a year and a half now, and I feel so much better about these kinds of situations now. Hang in there - this too shall pass :-)

Ditto that! It does get way easier. Now it's just normal life for us. I don't even think twice about it most of the time.

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Yes, as others have said, it does get better. I've been gluten free for over two years now, and those types of things don't even phase me anymore. At first, it used to really annoy me that I couldn't eat what everyone else was eating, or go for lunch with them, or eat "normally" at work conferences, etc. But now, to be honest, I sit there and watch everyone else eat while thinking, "ugh, don't they know how bad that stuff is for them??" ;)

I'm not sure that people are actually being insensitive when they order pizzas for their workers, or bring in cookies for them. They are just incapable of completely understanding what being gluten free means. I don't get upset with people for things like that. Just last week, we had a pizza lunch at work, and I had to bring my own lunch (of course). And even though everyone knows about my issues, and they understand I can't have any wheat, they all said, "Why aren't you having pizza?" Then I'd say, "Well, because it has gluten in it" and they'd all go, "Oh yeah! The crust!". They weren't trying to be annoying. They just forget because they don't need to constantly think about it like we do.

I will tell you about some insensitive things I've had thrown my way: Mostly, it's people outright accusing me of having an eating disorder (I'm fairly thin). Now THAT is RUDE.

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I will tell you about some insensitive things I've had thrown my way: Mostly, it's people outright accusing me of having an eating disorder (I'm fairly thin). Now THAT is RUDE.

Ooh, yeah. That's nasty. Likewise I'm tired of people assuming that I eat a tonne of veges at lunch because I'm dieting to lose weight. Yes, I'd like to be thinner, but I'm eating veges for lunch because they are tasty and easy to bring! Every time some coworker comments I feel like it's a "good for you dieting, fatso!" comment. Sigh.

I don't mind being around people eating stuff I can't have, so long as they hold off on the "sucks to be you" comments. I don't mind a bit of sympathy but those sweeping "Oh, I could never get up bread!" declarations are just stupid. Maybe they'll be lucky and stay in good health and not have to, but who knows what the future will bring.

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I'm sorry you had to go through that :(

It does get better, but it's never without a struggle, because there are people who either don't know what gluten is, what celiac is, or are just plain ignorant and don't care to understand how it affects us. I have no problem explaining stuff to someone who has no idea what gluten is or celiac, cause they're actually sincere in wanting to know what it is and what happens when I eat anything with it... but there's people like my sister who think people like us are the worst people on the planet. She's one of those people who would be outraged by someone getting different food to an allergy accommodation, and people like her don't make this easy.

Then there are people who are just wonderful about it. My landlady's elderly parents needed help setting up their new TV and fireplace, and other work around their house, so I went over this last weekend to help, and they were so kind and made me gluten free lunch both days for helping them. The kindness of some people just blows the rude people out of the water, and then, it doesn't matter what they say or do, cause they're just ignorant and rude about it.

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It's been almost five months for me, and I am still taken by surprise with these "meltdown moments". Sometimes I will be fine in a given situation. Other times, even in the exact same situation, I start to cry. I think we are overwhelmed still, with all that this entails, and of course we're still in the process of healing. All of that can lead to a bit of an emotional roller coaster.

Everyone has given you good advice, and all I can add is this: Next time, you might be feeling stronger and it might not bother you. And if it does, cut yourself some slack. Sometimes the only way to get over our sadness is to indulge it for a while. Then, we pick ourself up by our gluten free bootstraps and march on.

(((((HUGS)))))

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I have gluten jealous/envy days every so often. I have been gluten-free for two and a half years and every so often (not as often as when I first came off it, but often enough) I just break down! I want to eat good glutenous food darnit. lol.

Keep your chin up! It gets better! Thank goodness for forums like this to make me feel less crazy in this glutenous world.

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Aww thank you so much to everyone who responded. Just knowing that there are other people out there who have felt the same way definitely makes me feel a little bit better about everything.

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Honestly I'm way more annoyed by people who try to bend over backwards to feed us. We aren't going to trust it so it's just awkward. People say stuff without thinking, too. Just last week a teacher who has been very good about preventing cc for my son and others in the class said "I could never be gluten-free because half my diet is bread. I love it too much"

Well no shit. My daughter ate nothing but Mac and cheese, my son's favorite food was garlic bread, and you can bet they loved eating the Halloween candy they brought home. We're not gluten-free because it's easier or the kids wanted to give up their favorite foods!

People are insensitive because they are self centered. We all are, to some extent. In fact, when we expect others to remember to accomodate our diets we are being just as insensitive and self centered. Most people are well-intentioned, though, even when they miss the mark. I try to remember that.

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If I had a dollar for every time I heard someone say, "I could never give up eating bread," I'd have the bill for my colonoscopy paid off :rolleyes:

I've started carrying a little "care package" in my purse with gluten free condiments and a lara bar. That way if I'm stuck somewhere I know I'll at least have one gluten-free thing to eat.

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..... When the waitress brought my lovely garden salad, at least 4 people came up to me (who had already known about my celiac, but clearly forgot)... pouting "HOW DID YOU GET THAT SALAD!? I requested that and they said they couldn't do it. Not fair! Can i have some?!" as they walked around with their plates filled with great glutteny food.

doesn't that just kill you? i just smile and say: because i'm special :) and if they're particular jerks, i add: and your *not* :)

everywhere i go and bring my own food, i usually hear something to that effect. jeez. go ANYWHERE and eat, oh,..... ANYTHING YOU WANT, but don't be all vultching over my food. damb glutenaters...... grumble...... <_<

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It does get better, just takes time. I had regular melt-downs for months. It was close to a year before one day I suddenly realized that I was automatically grabbing something for myself when we headed out - and that I wasn't having a melt-down.

One thing that has helped is that I bought several of the plastic divided plates (ziploc has some) and I make several frozen meals. I can toss it in the micro and be ready to eat out in minutes. Maybe that would help some.

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Espresso, I feel for you and I've been there. I haven't had time to read the whole thread, so I apologize if I'm saying the same thing that others have said.

I have tried eating from the stated "safe" buffet salad and entrees that the servers said was gluten free. Never again.

What I have done is to call the organizer and get the name of the catering manager ahead of time. I usually call a week before and then a reminder call two days before.

Last week I was at a remote resort on the Columbia River and I had the best experience! I was worried because I didn't have a car and there was no grocery store nearby so I was stuck for two days if they didn't accomodate me. So, before we went I specified that I couldn't eat from the buffet, wouldn't take a chance and needed a plate made up for me. When I got there for dinner the first night I tracked down a server. He knew I was coming and then he told me that the chef made everyone's salmon entree gluten-free. So I didn't have to get anything special at all. And everyone who had the salmon (there was beef and chicken choices too) said it was the best salmon that they'd had in a long time. I was very lucky and wasn't singled out.

At the dinner event that I went to last month, I introduced myself to the server, showed him where I was sitting and left a colorful scarf on the back of my chair. The server brought me my meal when everyone else got theirs and I didn't have to be different, although I had plain white rice insead of pilaf and no cream sauce on my chicken/veggies.

I did have a bad experience recently where they said they'd have a plate but then told me to eat at the buffet. After I perservered, I did finally get a plate - with halibut! - about a 1/2 hour after everyone else had gotten to the buffet. Everyone was jealous, just like with your dinner. So I guess it's not always going to work.

Hang in there! We're all here to support you. And keep a LARA bar or a Kind bar in your purse/briefcase at all times. Or a Snickers!

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