To Tell Or Not To Tell . . .

[stargirl]

Hi guys, I wanted to hear what you guys do meeting new people. How do you decide who to explain celiac disease to and who to just ignore. I'm always trying to decide if it is worth explaining to people and often end up with someone staring at me like I'm an alien or saying my most hated phrase, "That sounds really hard, I could never do that!" Like they wouldn't if they were sick all the time. But that is another battle, I want to know how you decide to tell or not to tell. Not just to kids but to adults as well.

[tarnalberry]

There has never been anyone who I haven't (when appropriate) or wouldn't give the brief descriptions "I have a dietary restriction." "I'm gluten intolerant." "I can't eat wheat, it will make me very sick." (I start with the first, and add the next two as appropriate.) I've even said this to the guy sitting next to me on a plane (when I got a sandwich I couldn't have and offered it to him).

But it all depends on your personality.

[Alexolua]

stargirl:

My two cents. If it's a random stranger, than no need to explain it to them, unless it comes up. Like if yer out to eat, or a situation like Tiffany mentions. If it's someone you know, then it's up to you. If it comes up in conservation, than try to explain it? Think if you just blurt it out, without any real warning, then your chances of getting a look would be higher, I think.

And if it's someone you know, who has known you have had health problems, and they seem to have cared, could be good to try to explain things. They might want to know what has been the cause?

Just some ideas. Though I agree with Tiffany that it depends on your personality too.

[celiac3270]

I, too, think it's a matter of opinion. In the beginning I told anyone who questioned my food or whatever. Now, I like to do as little explaining as possible. If someone offers me something (like a cookie), rather than going into a full-scale lesson on gluten intolerance I prefer to just say "no, thanks". I only like to explain the whole thing to people who I know I'll be spending a lot of time with; for example, I think relatives should know so that they can be better accomodating to dietary needs. I don't really like to talk about it too much with non-celiacs.

[stargirl]

I get what you guys are saying. I've been doing this for upwards toward a year now and I don't blurt it out every time someone offers me a cookie. However; when I am forced into explaining people always give me looks like I'm making it up. Or they tell me how hard it is and that they couldn't imagine having to live that way. I was just interested in how everyone was handling their own situations. I get tired of people assuming I'm anorexic or overly concerned with my weight just cause I won't eat their food. I know that is their problem but it bugs me nonetheless. Anybody got any catchy lines to make people laugh about it instead of patronizing us or pitying?

[MySuicidalTurtle]

I tell people if I want to or if it comes up.

I find it better when I just don't tell people who don't need to know. . .don't know why. It is nice in classes when one or 2 people know and know I don't sit and talk about it because then when I say no to pizza or stuff and people start asking q's they divert it. Though, in some of my classes it's helpful to talk about. In my health class it was a great learning tool for myself and others in my class. So, I guess it depends.

In HS almost everyone knew and I like it better in college where it doesn't matter.

I don't know any lines to make them laugh. I am a very sarcastic person and laugh a lot so they usually they see how I act and then don't fuss. Sometimes they tease though. Aye, people are weird!

[tarnalberry]

I found that MY confidence level was the most important part in talking about it. If I have the confidence that I'm doing what's right and I'm healthiest I can be, it helps. A lot of it is attitude, I think.

[stargirl]

I know what I'm doing is right but I get sick of people trying to "understand" how I feel. I have explained things to those I think need to know but when I don't tell others they are hurt when they discover that I have celiac disease and didn't mention it. I was just curious on what you guys were telling different people. I always find myself launching into a longer explanation than I mean to because nobody gets it. They won't leave it at food allergy or wheat because then they want to know why I can't have things without what they consider wheat. It just gets so annoying to explain and explain and explain the same thing over and over again.

[Alexolua]

I always find myself launching into a longer explanation than I mean to because nobody gets it.

stargirl here's some ideas for you.

Not sure this would be entirely correct, but if someone is like.. oh you have a food allergy? Say something like, "No, I have a genetic disorder that makes certain grains like Wheat, Rye, Barley, etc.. toxic to my body, and will cause my immune system to attack my intestines."

Maybe not exactly like that, but if you throw out words like, genetic disorder, toxic to body.. it gives a more definite image of why something is bad in someone's mind, since allergies don't seem that bad to some people. They can understand toxic to body, or maybe even poison.

Here's another idea.

Could say, "I have a genetic disorder that makes my body react to grains that contain gluten, as if I were eating rat poison. And I can't have any food that may contain trace amounts of gluten, because it'd be just like you being given food that may contain traces of rat poison. Would you want to eat it, knowing it still might make you sick?"

Hmmm.. so, basically the point of this long post is, just try to explain things in terms that'll make a person whose never experience Celiac understand. My above example you could use toxic waste too, instead of rat poison. Maybe it's stretching things a little? But.. it'll help people understand how serious of a problem it is. =)

[celiac3270]

I sometimes use the medically incorrect "allergy" term when i don't want to get into something long. I find that when you start throwing around genetic disorder and intolerance, it gets complicated.........depends who you're dealing with

[stargirl]

I like the idea of telling people it's like rat posion and genetic. A lot of people treat allergies lightly, which sucks for people who can't. Thanks for the tips

[MySuicidalTurtle]

Tell them it's like a peanut allergy. . .which may not be totally true for all of us but it lets them know it is something to take seriously. Plus you never know if you'll have a severe reaction one day.

If I get fed up with people I have no problem saying "I don't like talking about my celiacs and I am done talking about it today." Most back off and just don't talk about it.

[lyndszai]

everytime someone asked me whats celiac and whats wrong with me I just told them I was allegic to wheat...ect I guess I really shouldnt have used that word.I dont really know what to tell them with out them looking at me weridly.My friend usually asks whats in something like a slush at the store caz i hate the look they give lol.

I only tell people who are my friends and I had to tell a teacher because my food got contaminated and I spent my whole lunch hour sick so she let me lay down.The only other time I told someone I didnt know that well was becuase she heard I was anerexic or had an eating disorder I didnt want her to think that so i had to explain.People like that i dont even want to explain it to but i figure i should

[Guest ~wAvE WeT sAnD~]

Stargirl--

I agree, tell your family members--I'm kind of hypocritical at this point since I haven't told all of mine yet, but I have to fess up sometime before Thanksgiving--since they'll ask why I'm not eating the turkey, rolls, cranberry sauce, etc...I don't know about your relatives, but maternal aunts and uncles are exceedingly judgemental...once they hear the word "disease", they will analyze me in the most negative way. I have a cousin who's perfected this fine art, and she's a psychologist...she's the type who will give unsolicited advice. (For example, when she was 28 (she's 40 now) UNMARRIED and CHILDLESS, she relentlessly persuaded my mother to get Ritalin for me when I was diagnosed with ADD. She now has two children, aged 7 and 4. The 7 year old used to projectile vomit when she threw tantrums as a toddler, and the 4 year old has a severe speech impediment/speaks at the level of a one year old. What hurts the most is that she REFUSES to get a Speech Therapist for her son because SHE CAN'T AFFORD IT AND HER INSURANCE DOESN'T COVER IT. Unbelievable. Sorry about the rant--I had to get that out of my system--another incident I've kept bottled up inside) I digress. Tell them, and I suggest that you begin with describing all the foods you CAN eat--fruits, veggies, etc. Then tell them that the only foods you need to avoid are wheat, barley, oats, rye and malt, and also any foods that contain these additives. If you are sure they aren't going to screw up their faces in confused expressions when you use the word 'gluten', tell them that the aforementioned ingredients fall under that category. If not, stick to simple language--I'm not saying they're stupid, but if you're casual about it, (I'll try my best when I tell my relations) they'll understand. I believe that if they love you and care about you as much as they do, they'll make an effort to buy gluten-free foods--mention also the gluten-free foods you can buy, the mainstream brands of food (ie Kraft Mayonaisse, Herb Ox Bouillion Cubes) that are gluten-free that Gluten-eaters buy, and the stores that carry them-make them realize how EASY it is to accommodate Celiacs. We don't ask for much--just beat the wheat (rye, oats, barley, and malt)

Good luck,

[celiac3270]

Yeah.....I told relatives before going to their house for a "family reunion". They had Classico tomato sauce, Kraft singles cheese, Heinz ketchup, mustard, gluten-free hotdogs, kinnickinick bread, gluten-free pasta, and other things I have forgotten to mention. They also had a cheap pot, spatula, sautee pan, and flipper thingy. If I had gone there and they hadn't known about my celiac disease, there would've been nothing for me to eat except for fruit. You need to tell them somehow--then they'll probably go look it up somewhere.

[rattaway]

Hey Jill, we do a completely gluten-free Thanksgiving every year. If you want any recipes, just let me know. We always make a cornbread stuffing that is so amazing, gluten-free pumpkin pie and cherry pie, gluten-free Turkey (cause you have to check ingr. on those too), cranberry sauces are also safe, also we have some great gluten-free rolls. Just let me know if you or anyone else needs help with the Holidays. Rian

[tarnalberry]

I'm the only celiac, but we do a totally gluten-free thanksgiving too. It's easy! (Though we go with rice stuffing, and don't eat pie. ;-) It's gluten-free, and Ornish-diet friendly too. :-) )

[stargirl]

Don't worry guys this question was about talking to acquaintances and friends. My family has been pretty good about the whole thing, even though they don't like the idea that their genes are partially responsible. I appreciate everything you have said and I think I will use some of the things you guys suggested to make people not underestimate the severity of having celiac disease. I often use "disease" in my explanation because it seems to make people realize it's serious, while they dismiss allergies as being insignificant. I have gotten some good ideas of things to say to make people not shrug it off and how to get people to leave it alone. I often like to tell people it's a lifestyle not a diet I'm on. Since it isn't going away it just needs to be second nature to be careful and not anything I'm not sure about. Sometimes I feel like people expect me to know immediately whether something has wheat in it or not and are shocked when I just shrug and say I'm not sure and don't eat it. Better safe than sorry right? I would rather just not eat it.

[celiac3270]

I might have said it the wrong way when I said that I just called it an allergy. When I'm dealing with people who need to know (like waiters at restaurants, family members, etc.), I give them the whole story. It's just with people who I really don't want to talk to about celiac disease that I call it an allergy.

[MySuicidalTurtle]

I personally don't see anything wrong with calling it an allergy when talking about it. So I don't mind telling people that's what it is. I guess somepeople just don't want to call it that. Anyways, do most people need to know what it's all about. . .I think not. .. they just need to know that if we are given the gluten we will have a reaction. . .that's basically what anyone needs to know. Blah blah blah I think people know what I mean. Ha.

[stargirl]

I don't mind calling it an allergy since it is but I find that seems to make people think it's ok to dismiss it and not be as careful. I would rather they be overly careful than accidentally contaminate my food. I've read other posts about people purposely contaminating food or teasing with crumbs and things and it would make me really nervous. I don't want to get sick from that. I haven't had any problems with that, most people have been pretty nice about dealing with me. I just hate to let people dismiss it as just another allergy. We know what it means to be sick from consuming gluten and I can say it's nothing like the reaction I get from dairy. It's just a two edged sword, wanting then to know to be careful but not to lose sight of the fact they we are just teenagers too and want to have fun.

[TeenCeliac]

i understand what you guyz are saying but it's not an "alergy" it's a disease...and this guy at my school ALWAYS askes about it...and i'm like...you know what...u r SO STUPID...stop the stupid questions...b/c i had explained to him that i wouldnt die from this "disease" but i cant have it...then i told him i use rice flour...now every time we make somthin in foods class...he's like "so you can only have RICE pankaces?" or "so you can only have RICE pie?" and i was like "yes...sure" b/c i didnt really care...but he SERIOUSLY got on my nerves...so i told him that his "rice pie" question was the stupidest question i had EVER HEARD...and he hasnt asked about it since...but he thinks he's all cool and stuff...but i know he's not...and so he hates me 4 that too...so celiac disease is also a social disease i would say too...if you guyz agree or whatever tell me...

aim-spongebobfan8888

e-mail-hunterhalverson@hotmail.com

thanx.

HunterRochelle

[bremac]

I'm 23 (disclaimer) I was diagnosed in senior year of highschool and pretty much everyone knew because I had been so so sick the whole year. Then in college I was fairly open about it and all of my friends knew, though only my close ones really understood. Now I am in medical school and I hardly tell anybody and I hate people's reactions, like "oh GOD, I would DIE if I had to eat that way" --gee thanks... But there's always the people that think you're anorexic because you never eat the food they offer you. I still have a few of those I'm debating about explaining to. It is a very social disease, I have to agree.

[Saz]

If I am at eating out and need something removed from meal, I simply say I can't have wheat or simply say that I am allergic to whatever it is.

However if I have to ask about the ingredients (such as in a milkshake falvouring) I will specifically state that I am allergic to gluten.

As far as other people go - I say that I am allergic to gluten, wich is in wheat and flour. Unless of course more explanation is needed.

I don't seem to have much of a problem with people continually asking me to have food. Today for example I was working and there was a cake, I said no thanks when offered and when the person I was working with came back with their piece they asked if I was sure I didn't want any. I simply I"m good, I can't eat it anyway. They then left the issue.

I had a complete stranger the other day asked me why I had my burger without the bun (they were sitting at the same table as me) I said that I can't have wheat. His reaply was "Oh are trying to loose weight? I was frankly concerned he asked me this as I am rather small. I replied with No I am ALLERGIC to wheat, I would eat it if I could. Things like this greatly annoy me as he was a complete stranger. but at the end of day its not worth getting upset about.

If when I tell people I get the "gee that'd would suck response" I sometimes reply with "yea it sort of does"

[Sophiekins]

I tend not to go into it unless people ask, or its an issue for my health. For example, my boss and my deskmates at work know which of their bad habits make me sick, but the guys across the way don't know.

As far as a light-hearted way to deal goes, because I have soooo many other grains I have to avoid (corn, soy, millet, teff, quinoa, amaranth. . .the list just goes on and on and on) and have started to have epileptic episodes when I get glutened, I've got a new rule: if I didn't make it, or I didn't see it made, I don't eat it. I make the odd exception for VERY good friends and a couple of trusted gluten-free-friendly chefs, but in general I stick to my rule (and this includes most pre-packaged goods too. . .). With that in mind, when I'm in social situations that involve food (which is often, as my office loves to eat), I keep one hand busy with a drink and when someone offers me food, I smile and say lightly "Oh, thank you, but I don't eat." They usually ask, "What, never?" and I always widen the smile and say "Nope. Never." (It needs to be said in a light, slightly teasing tone so that it's clear you're not genuinely serious) and then I change the subject. If they bring the topic back into conversation, I'll say I have celiac disease, and explain that it's a genetic autoimmune disorder kind of like serious diabetes. If they continue to push, I'll go into the complete explanation.

When I was a teenager and learning how to cope, when offered stuff I used to go mock-melodramatic and say "But I'm too young to die!" (to pull that one off, you need a certain hammy attitude. . .but if you're fairly extroverted, it's worth a try. . .) and if they then asked why, I'd explain that something called gluten is to me like sugar is to a diabetic only there's no insulin for celiac disease. After a while it became a running joke with my friends. . .they'd offer me something and say "Hemlock?" or "Is today a good day to die?" I've also used (with boyfriends) "Thanks, but I really don't think hospitals are that romantic. . ."