People Just Don't Get It

[March102010]

I'm tired of people telling me its not a big deal, just because they havent seen me go to the hospital. I've had people tell me to order a hamburger and take off the bun! They either don't understand or choose not to. Any suggestions on how to explain celiacs to people in a simple way?? The clicnher....My mom trys to adjust our dinners but she thinks I'm being silly! Help please!!!

[scarlett77]

With some people like at restaurants I just say "allergy" since it may be easier for them to get. With family and friends I explain it like this: it is like feeding someone rat poison. I know it sounds harsh, but if you think about it is a pretty close comparison.

I wish you luck and hope that things get better.

[March102010]

Thanks so much! Thats a good idea. I just found out I had celiacs 5 months ago. i originally went to the doctor because I have excema,sleeping problems, major issues with digestion, and absolutley no energy; so I wanted relief.I've been through every doctor, every kind of steriods, and topical but nothing works. So, I'm hoping this diet helps me, especially with the excema.

[GlutenFreeManna]

When I have to explain to people preparing my food I compare it to a peanut allergy. People with severe peanut allergies cannot have peanuts, but they also cannot have anything that has touched peanuts. They wouldn't tell someone with a peanut allergy to just pick the peanuts out of the trail mix and eat the other parts. That's the same thing as telling us to just remove the bun and eat the burger. Now maybe our reactions are not instant asphyxiation and death, but for sensitive individuals consuming anything that has even touched gluten makes them extremely sick. And continuing to consume gluten can lead to numerous diseases including cancer (cancer is rare, but it has a good scare value if people are not taking you seriously when preparing your food).

[Tina B]

With some people like at restaurants I just say "allergy" since it may be easier for them to get. With family and friends I explain it like this: it is like feeding someone rat poison. I know it sounds harsh, but if you think about it is a pretty close comparison.

I wish you luck and hope that things get better.

I just use the allergy explanation too. No one really needs or wants the details and I don't need to get into it.

[StephanieL]

I have to say that I get it that it is so much easier to say allergy. It makes people perk up and take it more seriously. I think educating people about the seriousness of being "glutened" is very important. To compare it to a peanut allergy is a little upsetting to me, the Mom of a kid who DOES have a peanut allergy. If you eat gluten, you get sick. It isn't good for you, no. But if my kid eats peanuts/tree nuts- he could die. Big difference.

[Grace'smom]

I have to say that I get it that it is so much easier to say allergy. It makes people perk up and take it more seriously. I think educating people about the seriousness of being "glutened" is very important. To compare it to a peanut allergy is a little upsetting to me, the Mom of a kid who DOES have a peanut allergy. If you eat gluten, you get sick. It isn't good for you, no. But if my kid eats peanuts/tree nuts- he could die. Big difference.

Stephanie, I think they're talking about when ordering in a restaurant or explaining to a stranger in a similar circumstance. Its simpler to say allergy than explain the ins and outs of celiac disease, particularly when servers don't know what you're talking about and don't have the time to be educated. I find myself shortcutting as well when we're out to eat, and explaining that because of a wheat allergy, my daughter needs her meat grilled on aluminum foil so that it won't become contaminated with anything else on the grill. Of course, with teachers, friends, family and those who work with our children on a day to day basis, the education DOES matter and you're right: we need to take the time to explain the dangers of being glutened. I read the earlier posts, and think everyone was referring to other, more transient circumstances.

[GlutenFreeManna]

Stephanie, I think they're talking about when ordering in a restaurant or explaining to a stranger in a similar circumstance. Its simpler to say allergy than explain the ins and outs of celiac disease, particularly when servers don't know what you're talking about and don't have the time to be educated. I find myself shortcutting as well when we're out to eat, and explaining that because of a wheat allergy, my daughter needs her meat grilled on aluminum foil so that it won't become contaminated with anything else on the grill. Of course, with teachers, friends, family and those who work with our children on a day to day basis, the education DOES matter and you're right: we need to take the time to explain the dangers of being glutened. I read the earlier posts, and think everyone was referring to other, more transient circumstances.

I was the one that brought up peanut allergies, and yes Emily is correct. I did not mean to offend you Stefanie, but this is a good comparison when explaining quickly to someone preparing food. I did not mean that the conditions are the same, but that it can make someone understand how to prepare food safely. I cannot just order a burger and remove the bun. Once the bun touches the meat the meat is dangerous to me as well. My niece has a nut allergy and her mom carries an epi-pen so I'm not trying to be inconsiderate of the seriousness of that type of allergy. But it's probably the only reason that side of my family understands how important it is for me to avoid cross contamination. They know not to touch bread and then touch my food. They get it because they have had to take similar precautions for their child. I explained in more detail to them the difference between an allergy like my niece has and the auto-immune response to gluten. But I also said it's important to avoid cross contamination in the same way they would avoid it for her. They don't allow any nuts in their house, I don't allow any gluten in mine. I may not die in seconds if I consume gluten, but being sick in bed for a week or more is not something I want to risk by just making light of the need for safe food prep either. What I'm saying is both conditions are serious in different ways. And both require similar methods for avoiding cross contamination. The OP was upset because people were not taking her food prep requests seriously. I was just trying to give her a way to explain so they would take more appropriate precautions. That is all. I hope I didn't upset you.

[StephanieL]

Oh I know. As I said, I get WHY people use that analogy. I was just saying that it is a great time to educate people on Celiacs (though I also get that there isn't always time for that!)

I wasn't trying to start anything I just worry that if *you* (a general you, not anyone specific) tell people it is an allergy, it may lessen how they react to deadly allergies. If they give you a burger that was on the bun and didn't tell you (I hate that that would happen to anyone but in reality....) and don't see the reaction they are less likely to take that warning seriously next time.

I know I am a bit touchy on the subject. I have never been able to take my kids out to eat due to our food issues. Maybe I am just jealous

[GlutenFreeManna]

Oh I know. As I said, I get WHY people use that analogy. I was just saying that it is a great time to educate people on Celiacs (though I also get that there isn't always time for that!)

I wasn't trying to start anything I just worry that if *you* (a general you, not anyone specific) tell people it is an allergy, it may lessen how they react to deadly allergies. If they give you a burger that was on the bun and didn't tell you (I hate that that would happen to anyone but in reality....) and don't see the reaction they are less likely to take that warning seriously next time.

I know I am a bit touchy on the subject. I have never been able to take my kids out to eat due to our food issues. Maybe I am just jealous

Well I'm talking mostly about food service people. I don't think they will ever stop taking allergies like peanut and shellfish allergies seriously because it is part of their basic food safety training (or at least it was where I grew up and had my first jobs in the food industry). BTW, I have a shellfish allergy that is very serious. It would send me to the hospital unable to breath. I haven't had a reaction in a very long time (I don't step foot inside seafood places) but I know how scary that can be. I could have just as easily used the same analogy with shellfish. I don't think there is any danger people will start believing shellfish allergies are not real if I tell them to prep my gluten free food with the same care they would for someone with a shellfish allergy. The reason the analogy works is that the danger of peanut and shellfish allergies is well known to be real. Anyway I know you understand that and I'm not trying to argue. Just trying to explain better I guess. Have a good night.