Insensitivity

[Janie]

Hi everyone,

I have been reading the posts here often but I don't post much.... I am grateful to be able to read everyone's posts. I have had Celiac disease and been gluten-free for about 2 years now.

I have a very supportive family, boyfriend, friends, coworkers, etc, but I still feel depressed from the Celiac disease... OFTEN (sometimes worse than others).

A few days ago I was on an international flight -- in FIRST CLASS -- and they didn't have a meal that I could eat (gluten free and vegetarian). They gave me a HUGE steak. I had ordered this meal well beforehand, and when I checked in they confirmed that is what I had ordered....After they realized their mix up, they gave me a package of rice crackers that had "wheat flour" listed as the second ingredient!!!!! It was as though I didn't explain anything at all to them.

I honestly wouldn't have minded so much, but then they made such a huge deal out of it... the flight attendant kept apologizing and then the supervisor came out and was talking to me about it (I guess it's a big deal if they aren't able to cater to someone's diet in First Class). The supervisor had the nerve to say, "Oh well I've never heard of gluten free before. What is that?" and the way he said that it was like he thought I was just trying to be difficult.... I tried to explain that it is a medical issue, etc, but I couldn't really talk about it much because I felt like I was going to cry. So I just said that it was fine and I didn't want anything.

They took away my food and then I reclined my seat. I hid under a blanket and sobbed. It was horrible. I can't even explain why I was so upset. I don't really care about the food, but I felt that the people were incredibly insensitive.... AND this is the third time that this has happened to me on a flight in the past 3 months. I wish I had the guts to be super b%$@#y and mean about it except I know that I would burst into tears.

I realize that Celiac disease is not a money-making disease and I don't think many people's attitudes, opinions, or education levels will ever change in any real way. Having to eat gluten-free all the time is not the worst part, the emotional part of it is.

Thank you for listening.

[MySuicidalTurtle]

It is sad that we have to deal with any of that. You should get the meal you paid for and requested ahead of hand. It's not being b%$@#y when they are clearly not doing their job. I just have given up on most people and take my own food with me. I hope your next flights go better and that people, including supervisors, do their jobs.

[hez]

I sometimes think we ignore or downplay the emotional side of celiac. I remember giong to a support group meeting and being brushed off. They just kept saying "it gets easier". And for the most part I agree, it does get easier. But for me it is hard being different. That is what it feels like. Eating has become a constant battle of reading labels and checking with companys. This is now my life. A life that I am grateful for. Especially since I finally feel better. But aspects of life are more difficult and will remain difficult (eating out and travel come to mind). I am sorry that the airliner made you feel that way. I do hope that you continue to vent. It always makes me feel better to know that I am not alone. On this board I am not different.

Hez

[gabby]

This happens to me all the time on airlines (in coach, business and first class). I don't even bother anymore with trying to order a special meal. I just don't eat ANYTHING they serve on board. I tell myself I'm not paying for the meal, but for the ride. And if it is first class, I'm paying for the extra wide seats, the lovely reclining seats, the personal dvd player, the quilted blankets, the soft pyjamas (Lufthansa...gotta love them for that), and all the pampering. The espresso and cream is the one thing I can enjoy, and I do.

So I bring my own food on flights. Always. I actually eat better than most people, and I am very happy knowing I won't be getting glutened on the plane. I love to pull out my air-dried prosciutto, hard Italian cheeses, raw red peppers, fresh cucumbers, black olives and toasted almonds and enjoy them while around me everyone is digging into mystery meat and ancient cookies.

But I feel for you. It is a pain in the butt, and not fair that we have to pay for things we end up not getting.

That's what this forum is for. Vent. Vent hard. Vent often. And know when you are here, that you are not alone.

Gabby

[jkmunchkin]

I sometimes think we ignore or downplay the emotional side of celiac. I remember giong to a support group meeting and being brushed off. They just kept saying "it gets easier". And for the most part I agree, it does get easier. But for me it is hard being different. That is what it feels like. Eating has become a constant battle of reading labels and checking with companys. This is now my life. A life that I am grateful for. Especially since I finally feel better. But aspects of life are more difficult and will remain difficult (eating out and travel come to mind). I am sorry that the airliner made you feel that way. I do hope that you continue to vent. It always makes me feel better to know that I am not alone. On this board I am not different.

Hez

I couldn't agree more with this. I don't want celiac to become the main focus of my life, and yes I've found it gets easier, but the reality of it is you eat a minimum of 3 times a day, and each time you do this has to become a bit of a chore. It's not like something you can just ignore for a little while. A couple weeks ago I was at a restaurant with my family and when I was trying to explain to the waiter my needs, my stepmom had the nerve to say to me, "we should just make you a nametag that says, hi my name is Jillian, I have celiac." I couldn't believe it. I mean this is something I have to be conscious of day in and day out and it's just frustrating when people who you would hope would be the ones to help you a bit are the ones that are so obnoxious about it.

Janie, I had a similar experience on a plane this past fall. The flight was about 10+ hours. Atleast they came over and apologized to you. I didn't even get that much. They pretty much rolled their eyes at me when I said I couldn't just pick the croutons off the chicken ceasar salad. However all the other passengers loved me because when we stopped for a layover that would have been just over an hour and they were telling us they weren't going to let everyone off the plane, I basically told them that due to their screw up not having the meal I had requested 2 months prior; it had now been close to 11 hours since I last ate and unless they let me off the plane I was going to pass out in their isle. Needless to say myself and everyone else on board was let off to rome around the airport for about 45 minutes and I got food.

[happygirl]

way to go, Jillian

Janie-I think everyone can completely, 110% relate. We have all been there. I sometimes think I'm the biggest baby in the world-what grown (well, kinda, haha) woman cries over food????! And then I realize how 'weird' my Celiac world is and I give myself permission to get upset over it sometimes. It is frustrating.....I often joke that there is not a whole lot of "spontaneity" in my life anymore!

I think we've all had our 'breaking' moments---whether it be on a plane, at work, at a restaurant, at a party, at a wedding, at a friends house, or in the comforts of our own home.....The best news is, we wipe away our tears, continue to eat gluten free, and live a long life with those we love because as much as a pain in the a$$ this diet is, it gives us the ability to live a healthy life.

That being said, man, I am craving some chewy chocolate chip cookies right about now! Sigh!

[par18]

I couldn't agree more with this. I don't want celiac to become the main focus of my life, and yes I've found it gets easier, but the reality of it is you eat a minimum of 3 times a day, and each time you do this has to become a bit of a chore. It's not like something you can just ignore for a little while. A couple weeks ago I was at a restaurant with my family and when I was trying to explain to the waiter my needs, my stepmom had the nerve to say to me, "we should just make you a nametag that says, hi my name is Jillian, I have celiac." I couldn't believe it. I mean this is something I have to be conscious of day in and day out and it's just frustrating when people who you would hope would be the ones to help you a bit are the ones that are so obnoxious about it.

Janie, I had a similar experience on a plane this past fall. The flight was about 10+ hours. Atleast they came over and apologized to you. I didn't even get that much. They pretty much rolled their eyes at me when I said I couldn't just pick the croutons off the chicken ceasar salad. However all the other passengers loved me because when we stopped for a layover that would have been just over an hour and they were telling us they weren't going to let everyone off the plane, I basically told them that due to their screw up not having the meal I had requested 2 months prior; it had now been close to 11 hours since I last ate and unless they let me off the plane I was going to pass out in their isle. Needless to say myself and everyone else on board was let off to rome around the airport for about 45 minutes and I got food.

Jillian,

Since this disease came from across the pond did it seem as though the Euro countries were more accommodating to the needs of Celiacs?

Tom

[key]

Janie,

I am sorry you had such a rough time without food. I also am vegetarian and gluten-free. It isn't fun for me. I really was depressed about it for a few weeks about a month ago. I found I needed to cook ahead of time and have good stuff available, otherwise I was really depressed and just didn't bother to eat good food.

It is the worst part of this disease, the socialization and travel. WHen I am at home, it is ok ,but for me I don't like drawing attention to myself in restaurants, so I just don't order anything or most of the time I don't even want to go. We ate out as a family this weekend and it was so nice while we were there. I was thinking about how we never do that anymore (My celiac son and I have been on the diet for 9months), but I ended up getting gluten, so not so much fun anyway. It always makes me nervous eating out. I can't do stuff with our church I would normally do. I can't stand it when my friends sit and feel sorry for me, because I can't eat anything. I would rather them just ignore that aspect of me being with them.

Luckily my husband is supportive. Traveling though is very hard. I usually end up not eating anything good. Cheetos and M&m's, does that count for food?

Hope you have a better experience next time and it sounds like they were very rude to you. I dream of being able to eat normally again. I know, only in my dreams.

Take care! COme vent whenever you want.

Monica

[laurelfla]

hello! i'm so sorry that happened to you, Janie! i do think that being different is often the hardest part about this whole deal. i, too, have burst into tears over insensitive people/situations before.

and no matter how much you snack, snacks don't make a meal! i get so tired of getting stuck in situations where i can't eat "real" food and i just have to nibble on stuff out of my purse. i never get full that way.

Monica, i also hate having people feel sorry for me or having to ask a million questions in restaurants, so i tend to avoid eating out... maybe one day this will change but for now i do better emotionally and physically when i stick around home to eat. vent away, everyone! this is a very understanding group.

[Idahogirl]

I can relate to what everyone has said. We are looking for a church right now, and it seems that all of the activities to welcome newcomers revolve around food. Friendship dinners, Valentine's dinner social, welcome dinner (these were the three things announced at the church we went to this morning). I don't want the first impression that people have of me to be bringing my own meal to a church dinner (the Valentine's dinner is $15 a person-how ironic would that be?), or to their house! or asking everyone at the potluck what's in their dish. It's different when it's your family or friends. Our society revolves around food, especially socially, and it makes it hard on someone who can't just go with the flow. It's hard to avoid questions-either you stick out by bringing your own food, bugging everyone asking "what's in that?" or by eating nothing at all. I just wish that people could get to know me for me and not have "my special needs" (ewwww-that sounds dreadful!) be the thing they remember about me or associate me with.

Lisa

[nikki-uk]

Jillian,

Since this disease came from across the pond did it seem as though the Euro countries were more accommodating to the needs of Celiacs?

Tom

Well I don't know about that!I'm in the UK and people are just as clueless here.!

[floridanative]

I'm in the same boat with Lisa. Not about looking for a church actually but being dx'd only a week I'm in no way prepared to go to a Super Bowl party at someone's house whom I've never even met. I can hear it now. Hi - thanks so much for inviting us, oh and I can't really eat anything here just in case it has gluten in it so I brought my own food, which by the way I can't share so I'll get enough to eat. Nope. I think I'll skip that scenario.

[jkmunchkin]

Jillian,

Since this disease came from across the pond did it seem as though the Euro countries were more accommodating to the needs of Celiacs?

Tom

Actutally this was on a plane ride from NY to Hawaii. I've been to Europe but pre-dx. I've heard that a lof of the European countries are much more accomodating. I'd love to find out.

[floridanative]

So far I know that it's easier to eat out safely in Italy and in London since the condition is so much more dx'd there. Never thought the US would be so far behind other countries in any healthcare issue.

[jkmunchkin]

way to go, Jillian

LOL!! Thanks. If anyone needs tips on how to be just b%$@#y/assertive enough to get your point across but still sweet enough that people want to help you in situations like this... I'm you're girl!! It's my special talent

[Janie]

Yes, this is true - our society revolves mainly around food and eating. You can expect to be excluded from most social events by simply having Celiac disease.

[aaascr]

How about being banished from using the office

microwave 'cause your boss doesn't like

the smell of your food?

I guess broccoli is still a foreign food

to some!

It does suck the way people don't get it

and/or make fun of you...

I just carry my food with me and tell

servers etc. that I have sooooo many

food allergies (which I do, along with celiac)

that I didn't want to ruin their day.

[elonwy]

LOL. Turn the tables on em. I've banished anyone in my dept from using my microwave unless they can prove to me thier food is gluten-free. Its in my office, so its easy to control.

I've also shown up to several parties with my own food in my purse, and been able to be pretty discreet about it. I've found that after the initial Wha? people get bored with it pretty quickly.

I also feel that noone is really gonna know about it unless as many of us as possible tell as many people as possible. I've said on here in several places, your health is more important that how anyone feels about you, or thier pride for sure.

As for flying, I have yet to be on an airline that even serves special meals anymore, and brought my own food. My boyfriend ended up bumming off of me because my food was so much better.

I had tortilla wraps with lunchmeat and cheese, crackers and cheese, homemade trail mix, cookies. People around me were soo jealous. The only thing that truly sucked on the plane was the woman that sat next to me, ate a bunch of chocolate chip cookies and then dusted off her crumbs onto me. I was thrilled about that.

One day I will fly first class... ahhh.

Elonwy

[Nevadan]

It appears that most of the posters on this thread suffer from actual celiac disease. This is just a comment from the non-celiac disease gluten (or at least wheat) sensitive viewpoint regarding the social/emotional ramifications of being gluten-free. Clearly for those with celiac disease there is clear medically accepted evidence that following a strict gluten-free diet is a medical necessity. However, how about those of us without celiac disease (don't have the celiac disease genes, malabsorption, etc) but who do have less well accepted reactions to gluten in at least some forms? A (very) few dr's prescribe the gluten-free diet for this case as well without presenting particularly convincing, much less widely accepted evidence. I have to wonder if their gluten-free prescription takes into account the social/emotional costs associated with this diet. I've been strictly gluten-free for about 7 months. Being gluten-free is only a minor nuscience when eating at home but a royal pain in other situations. The social life has suffered: tend to avoid social occasions involving food (and I have a particularly accomodating circle of friends, BUT the gluten-free thing does wear thin pretty quickly), tend to travel less because of the hassles, etc. It is widely accepted in the medical community that a healthy social life is extremely beneficial to one's overall health. Life is a series of trade-off's. I have to wonder if the social/emotional costs of following a gluten-free diet are fully considered in these gluten-free prescriptions for non-celiac disease gluten sensitive people. Hopefully someday there will be many more definitive studies published on this aspect of gluten sensitivity; meanwhile I guess all one can do is rant .

Any comments from other non-celiac disease GS members?

George