Why Don't People 'get It'?

[floridanative]

Do any of you have friends of family members that act like you can just walk into any restaurant and order something plain (first of all how boring is that?!) and not get sick from cross contamination? I know no one should have to learn the intracacies of this diet if they don't eat gluten free. But really, why can't people just get it when you tell them you can't eat somewhere - it means you can't and that's the end of it? I'm trying to be patient but it seems unless someone has Celiac or problems eating gluten they will never understand how risky it is to eat out and that we have to be super careful when we do so. I eat out weekly but not without careful investigation, talking to the manager, chef or whoever. I'm sorry to vent but sometimes you just need to get these things out so you don't start world world three in your life.

[Guest southgoingzax]

Oh yes! I don't know how many times I have been told I can always "have a salad"! Now, I like salad, but who says I want to go out and eat that EVERY time? And, it kind of stinks to pay $8 for something you can make at home. You know what else I hate? The people who think they need to police my eating, once they find out I have celiac disease...the constant questions, "Can you eat that?", and if I have gluten-free sandwich bread, the constant, "I thought you couldn't eat bread!"....Blah blah blah. They have NO idea how hard it is to just stay healthy, never mind putting up with their crap. And they act as if I should know EVERYTHING that is safe or not safe for me to eat. Hello?!! There are about a billion different ingredients in foods and it's not like gluten is clearly labeled.

Phew. I needed to get that out.

[floridanative]

I KNOW! We have a family reunion in Sept (DH family) and most of them have never heard of Celiac much less gluten! I can't imagine how that's going to go - lol ! We even have our own cabin with FIl who gets it to an extent since the big cabin will be full of nothing but gluten. I'm sure if we go out to eat over the weekend I will have to have a salad because they're not going to Outback and Pigeon Forge is not that great for Celiacs. But it's once every three years so I can deal. But it is funny when people say that I can have a salad. One of these days I'll say 'ok I'll have a salad but only if you do too! And you can't have anything else!' Can you imagine how that would go over?

Oh and the whole questioning me if I can eat something thing. Well I think I know if I can eat something or not. I'm not a teenager cheating on a diet behind my parents back. I'm 43 freakin' years old! Anyway, I'm glad I'm not alone in this aggravation.

[connole1056]

I really feel for you guys! I have never had a problem getting the food gluten-free. Sometimes all that is available is something plain, but usually that is not the case. Steak is always great, since I think it is best undoctored anyway. I have always found chefs to be very careful about cross-sontamination. They are usually the ones who bring it up first-something that makes me feel very comfortable! If your relatives are not supportive of you then I think you need to speak to them about it. If they do not stop what they are doing, then maybe you should take drastic measures and stop going out with them. If you give them the reason, then they will most likely change their behavior and you can try again when they do. I can see suggesting a slald in a pinch, but not on a regular basis.I have found that being direct is the best way to get my point across, and maybe it will work for you.

[floridanative]

Nope - I've tried explaining it to them without boring them to tears to no avail. I just think some people either don't want to understand or can't. Or since it's really not their problem then they don't pay attention and they don't realize how annoying their behavior is. And truthfully, it's most annoying when several people do the same thing in a short period. Each doesn't know the other has already said the same dumb thing so it's not really their fault in that respect. I know the answer is I just have to get over it and understand that mean no harm. I think I'm overly sensitive - esp. since going off gluten so I just have to ignore silly comments and let them roll off my back. I just have to vent here sometimes because I truly think that is the best thing for me personally. I've talked until I'm blue in the face, then made little comments reitterating the situation and several people in my life don't get it. One very close friend of mine snapped at me one day when I told her I couldn't have lemon curd that we both love. I now have a gluten-free kind but when I told her what we like has wheat in it she told me that of course it does not. I'm sure she felt funny when she went home and read the label like I asked her to do. She never brought it up again. I think the whole restricted diet thing just wierds some people out and that adds to the problem.

[Turtle]

I feel your pain...I have this same scenario often...and then they give you the guilt trip for not being able to eat anywhere..that REALLY makes me angry! Sometimes I just wanna live my life w/ my dog left ALONE! HAHA!

One more thing....I agree w/ you southgoingzax if I hear "you can just get a salad" or "can't you just get a salad" one more time as if they just saved the world, i'm gonna toss a salad right at them!

[plantime]

I quit going to ladies' meetings at church when they started having the meetings at restaurants I can't eat at. I quit going to church when everything started to revolve around food. They chose not to "get it," and I chose not to hang around.

[Guest southgoingzax]

I don't think people realize what a big deal "dining" is - I mean, the "breaking of bread", sharing food, is one of the ways human beings bond. And when you can't be like everyone else and participate in that ritual, people, ourselves included, find it disturbing. I know it sounds corny, but it's true...eating together and sharing food is a symbolic ritual of cooperation and communion. And people without celiac disease have no idea how horrible it feels to be the outsider and be forced to be singled out. I personally find people's inquisitiveness pretty insensitive, too. They will make my disease a topic of dinner conversation, of all things! I feel like it's my own private health issue that if people are curious about, why don't they just google the damn thing - I shouldn't have to share the gross details, especially not over dinner.

Anyway, it's been three years and I am finally getting better about going out to eat. I can now tell the waiter myself that I need gluten free foods. Before, my boyfriend would say that he was the one who needed a special menu because I would start to cry if I had to mention it. But I still find it irritating that people find it interesting to talk about without even thinking that it might be painful or personal to me.

[frenchiemama]

You know what else I hate? The people who think they need to police my eating, once they find out I have celiac disease...the constant questions, "Can you eat that?", and if I have gluten-free sandwich bread, the constant, "I thought you couldn't eat bread!"....Blah blah blah.

Oh I know!

"I thought you couldn't eat that!" I don't know if they honestly think that I forgot what I can and cannot eat, or if they are trying to "bust" me cheating on my diet (and thereby prove that it's not a big deal, just like they suspected all along). Either way, it's freaking annoying.

[KaitiUSA]

I understand this exactly. So many people do not realize everything that going gluten free involves. Like to pick up and travel for me is hard without planning what I will have to eat and so forth. I hate it when people try to play it off like its nothing and then are very careless with what they offer you even after you tell them

[floridanative]

I quit going to ladies' meetings at church when they started having the meetings at restaurants I can't eat at. I quit going to church when everything started to revolve around food. They chose not to "get it," and I chose not to hang around.

I'm so sorry to hear that. That is certainly not very umm I'll be nice and just say 'nice' of them.

I don't think people realize what a big deal "dining" is - I mean, the "breaking of bread", sharing food, is one of the ways human beings bond. And when you can't be like everyone else and participate in that ritual, people, ourselves included, find it disturbing. I know it sounds corny, but it's true...eating together and sharing food is a symbolic ritual of cooperation and communion. And people without celiac disease have no idea how horrible it feels to be the outsider and be forced to be singled out.

I totally agree with the above comment. I have resigned myself to make sure and plan things that do not involve food with a close friend because she seems to prefer to never hear the words Celiac or gluten. I'm not ready to give up on the friendship yet. Anyway, in an innocent 'how are you' e-mail from a mutual friend 'Y', she mentioned that friend 'X' probably feels wierd around me now because she wants everyone to enjoy eating as much as she does. She says me not joining in makes her uncomfortable. I was shocked by her comments but realized she was right.

One more thing....I agree w/ you southgoingzax if I hear "you can just get a salad" or "can't you just get a salad" one more time as if they just saved the world, i'm gonna toss a salad right at them!

Thanks for making me laugh out loud for real - I needed that!

[emcmaster]

I think people assume I have an eating disorder when I tell them the things I can't eat. I've gotten the "just have a salad" excuse, too, but it's harder for me since I'm so sensitive to fats - I can't have any dressing, so what am I supposed to do, pay $8 for lettuce and tomatoes that probably has crouton crumbs on it? No thanks.

[par18]

I quit going to ladies' meetings at church when they started having the meetings at restaurants I can't eat at. I quit going to church when everything started to revolve around food. They chose not to "get it," and I chose not to hang around.

Hi,

That is pretty interesting. When I went to the cemetery cleanup in April of this year to the chuch where my father was buried the end of the meeting is a covered dish meal. When I told them I couldn't eat anything they had this sad puzzled look on their face. I think I could have talked the rest of the day to most of them and I don't think they still would have understood. I paid the annual dues and just left. I don't feel angry or bitter just think that like you said a lot of people's lives revolve around the next meal. Anyway I must admit when I see you are from Kansas all I can think of is the term "Kansas wheat farmer". Take care and good luck.

Tom

[misskerry]

Thanks so much for starting this topic! I have to admit that I've been lurking here since I first heard the term 'Celiac disease' a couple of weeks ago. The one thing that I've said over and over is that my one friend just doesn't get it. She makes comments to me that make it sound like it's a diet that I choose to be on and that if I cheat then there's not really any consequences to it. I can't seem to get through to her that it's not just a simple 'diet', that I have very little choice in the matter. It's just frustrating. Thanks for letting me put my two cents in here.

[jennyj]

I've had people come up to me at church dinners and start digging in my plate with a fork to "see just what you can eat". I feel like going to their plate and saying something hateful but I don't.

[dhramos2003]

I feel your pain...I have this same scenario often...and then they give you the guilt trip for not being able to eat anywhere..that REALLY makes me angry! Sometimes I just wanna live my life w/ my dog left ALONE! HAHA!

One more thing....I agree w/ you southgoingzax if I hear "you can just get a salad" or "can't you just get a salad" one more time as if they just saved the world, i'm gonna toss a salad right at them!

i totally understand i was diagnosed almost a yaer ago and my family will still ask me if i want to go get pizza with them and i usually want to because i grew up on pizza but im like no i cant eat it and when i first got diagnosed my mother inlaw used to tell me i was a liar and making it up because she used to be an obgyn nurse and had never heard of it i felt like smaking her cause she and her daughter would go out of there way to contaimenate me as if they thoubht they would be able to say see i told you that your a faker i still wont eat around my husbands family cause even when i would get the 8$ salad at diner they would be like well you really need to put something on that and start messin with my food since you never know what salad dressings are gluten free it makes me soooooooo mad

[Cornhusker]

I couldn't care less whether other people 'get it'. It's not their problem, it's mine (and my immediate family's). At this stage (3 weeks after diagnosis), I still like talking about it to anyone that will listen. Nobody doubts me and I think they're happy that I'll be feeling better.

We're going home to my folks this weekend and it'll be my first time eating outside my house. I've had to get my mom to promise not to make a big fuss. She's all fired up to try cooking new things that work for me. That's cool and we'll get through it just fine. My in-laws are pretty medically savvy, so I think that'll be fine as well.

I'm too early in the process to deal with eating out and vacation travel. Small steps. I'll figure it out. Can't become a hermit at the age of 35...

[Guest southgoingzax]

Jenny,

You're kidding! People actually dig through your plate!?! Oh, I would flip out! How unbelievable. How could they think that was in any way appropriate? Wow. Now I feel like I have nothing to complain about.

[samking72]

My boyfriend's friend and her family are in town and we went to see them the other day. I talked alot with her about celiac and the places I can safely eat at. I haden't eaten all day and was STARVING. She commented on a restuarant that they enjoy and said "it wouldn't be a good idea to eat there tonight". A few hours later... guess where we ended up... this place called The Garlic... I had a ceaser salad the size of a penny and watched everyone eat their pasta and such. I got sick anyway, I'm sure they picked the croutons out of it. To top it off, the was a Outback across the street. Thanks guys. I should have stayed home

[2Boys4Me]

One of these days I'll say 'ok I'll have a salad but only if you do too! And you can't have anything else!' Can you imagine how that would go over?

DO IT! DO IT! I double dog dare you!

[Lymetoo]

I quit going to ladies' meetings at church when they started having the meetings at restaurants I can't eat at. I quit going to church when everything started to revolve around food. They chose not to "get it," and I chose not to hang around.

I understand. I decided not to JOIN the ladies group several years ago because I could not eat anything with alot of carbs or sugar because of my yeast problems.

Now it's TOTALLY out of the question!

Next church potluck will have to be "no luck" for me!

[Guest adamssa]

No matter how many times I explain it to my dad, it just doesn't sink in. He still tries to offer me regular bread! And I hate having to order salads too! Now I try to opt for coffee with friends rather than restaurants. At least at Starbucks all the drinks are safe.

[Sweetfudge]

OMG! This is like the story of my life the last few months! I finally had to tell my dear, sweet husband that I would not eat another salad while he ate his cheese sticks, burger and fries at Red Robin's and that if he was too embarrassed by me talking to the waiters about what I couldn't eat and how I had to have my food prepared, then we would just stop going out to eat. That shut him up pretty quickly!

Not to say that he isn't a wonderful man, because he is! He just doesn't like to make things into a big deal, and has a hard time with my new lifestyle which IS a big deal every time I eat. He still won't eat much of my "weird" food, (he's very picky and very traditional) but I've been trying to branch out and make meals that are naturally gluten free, which we can enjoy together.

Here's the problem I have. My inlaws invite us over once or twice a month to eat, or celebrate someone's birthday, etc. I've explained my food condition, and they have tried to be accomodating (at least the first few times), but whenever I go over there, I still end up being sick. How do I deal with this, I'm sure it's cross-contamination. Do I stop going, do I bring my own food, do I address them again? I'd offer to have them over and cook, but there's 6 of them and only me and my husband at my home. I don't know if I even have the budget to cook a meal for the whole fam-damnly....And it's especially hard at dessert get togethers when MIL whips out her home-made cheesecakes and cookie ice cream...and I get to watch everyone enjoy it as I sip a glass of ice water. I don't want to offend them, but I'm tired of being put on the back burner.

.....sigh......

[plantime]

I am very, very fortunate, in that my husband sat with me and watched my mom die. Later, when we learned about celiac, and that all of her symptoms fit, he realized that I would die the same, horrible way if I did not stick to the diet. I have no trouble from him, he helps me read labels, even. The rest of my family, though, just doesn't get it. My older sister and neice do, they can't have wheat, either. But they still eat it once in a while, so Daddy doesn't realize just how serious celiac is. He only knows what he sees them doing. (We live in different states, so he doesn't see me on a regular basis.)

Try taking a dessert with you to share. That way, you can have something yummy, and visit with your family.

[floridanative]

plantime makes a good point about having a supportive spouse. If I didn't have my DH watching out for me I'd go off the deep end when dealing with people. He's all about reading labels and feels more comfortable seeing gluten free on the label of anything packaged. He had to explain my condition to his uncle recently as we're attending a family reunion, for which we were invited to share a large cabin with the whole family. We said no thanks we need our own kitchen. The uncle didn't really understand and it should be quite interesting to spend the weekend with a bunch of folks who've never heard of Celiac or gluten. I don't ever remember any food being served at one of these reunions that was not a casserole (w/cream of something soup) or baked goods. So I'm taking my own food for pretty much every meal.

2boys4me - don't tempt me!!!!!!!

Sweetfudge - unless one of your family members gets dx'd with Celiac, they probalby won't ever understand how to prepae food safely for you. I think it might be time to let them know that you don't want to be a bother so you'll just bring your own food. And dont' forget to take something for dessert - just for you. That way when the others are enjoying their cheesecake, you can have something wonderful too. Good luck! I know it makes it harder when you live in town with family - or would for me anyway - Celiac or not!