Explaining Celiac Disease

[Sillyyakdidi]

how do you guys explain celiac disease to someone new? How do you get your point across without either grossing someone out, or just saying its a wheat allergy. People do not take me seriously. I've tried saying its the same as giving a diabetic sugar, or its like swallowing glass....just tell me what you do, it could help me explain it better!

thanks

di

[MySuicidalTurtle]

I usually say it's something like a allergy if they don't really need to know or if I don't feel like sharing. For closer people I explain that it is a genetic auto-immune disorder and about what I can't eat and about my intestines.

[Sillyyakdidi]

I usually say it's something like a allergy if they don't really need to know or if I don't feel like sharing. For closer people I explain that it is a genetic auto-immune disporder and about what I can't eat and about my intestines.

i just find it s ohard to explain, and everyone comes off thinking i'm just a picky eater, if you're not serious enough, people will gluten you, but if you really explain whats going on, they don't want to talk to you anymore, lol when i get glutened i get very nauseous and sometimes throw up, and i don't want to have to explain that to people i just met at school or anything, but to tell you the truth, alot of people think i have an eating disorder, because i only eat salad when out, dont eat at anyones house, rarely eat in front of anyone, and then sometimes get sick after i eat!

[Viola 1]

I've gotten lazy, I always carry my Canadian Celiac Ass. restaurant card, and hand it to someone to read. It explains everything direct and to the point, Then I will answer honestly what ever question they bring up from that.

[Phyllis28]

I don't even bother to give it a name or accurate description to someone new. I simply explain that wheat, oats, rye and barley will make me very ill. Most people assume it is an allergy, which is ok. I will answer any further questions anyone may have. My family, co-workers, and friends receive the details.

[Electra]

I usually say it's an autoimmune difficiency disease that causes my own immunities to attack certain parts of my own body if I eat foods that have certain ingredients in them. The damage that's caused by those attacks results in malnutrition and a slew of other medical problems.

I've also told people that my body recognizes certain ingredients as a flu like virus, so (If I eat those ingredients) I build up immunities and those immunities attack the parts of my stomach and intestines that digest food and stop me from absorbing nutrition and can result in death.

I don't want anyone to associate what I have with an allergy because to me it's much more serious condition then what people commonly associate with an allergy, but that's just a personal choice for me . I am aware that real food allergies are serious because I know people who will go into anaphalactic shock if they eat peanuts, but IMO most people think of a minor condition when you tell them you have a food allergy.

I think it's a personal choice and whatever makes you confortable is what you should say. It's all about what makes you feel the most confortable.

[happygirl]

I tell people its a common autoimmune disorder...that my body sees gluten as a foreign substance and attacks it when I get even a bread crumb. I describe how it damages the villi, and how it can cause multi-symptoms, etc (this way, I don't tell them what "I" have per se). At this point, they are usually asking questions, and I take it from there. I like to stress that as long as I'm gluten free, my switch is "off"....but if I get glutened, it turns back "on" and my goal is to keep it "off."

Good luck!

[tiredofdoctors]

I usually tell people that I have an autoimmune disorder that prevents me from eating anything containing gluten. Of course, then you have to explain that it is BROW -- Barley, Rye, Oats and Wheat. If they go further and ask what it does, I tell them that there's a protein on a part of your brain that is very similar to gliadin -- the substance in gluten. My body mistakes those proteins for gliadin and destroys them -- and I need all the brain cells I can get!! Then when I tell them that this autoimmune disease is why I'm in my wheelchair, they kind of take it more seriously. I think.

[jayhawkmom]

Since my daughter is also allergic to peanuts - and most people are aware of how serious peanut allergies are, I have no problem telling people that she's *allergic* to wheat and anything containing gluten. She actually is allergic to wheat, but thus far I've not had to go much further into my explanations.

I'm not sure exactly how I'll approach it when I do have to go further into it.

[printmaker81]

I like to simplify it by saying gluten is a protein in some grains that my immune system recognizes as poison. Once that response is triggered, my body can't tell the difference between the grain it meant to attack and my healthy cells, so I pretty much self distruct. That covers everything in my opinion without getting too gross about the details.

[Laurad-]

I used to just say that I was "allergic" to wheat, but I had trouble getting people to take me seriously (as they usually assumed I had an eating disorder or that I was just being picky) but now I say that "I have a genetic autoimmune disorder that will cause my body to attack itself if I eat wheat," and it works a million times better. I know it kind of sucks to divulge that much info to people you've just met, but using such technical language keeps them from thinking you're making it up.

[LL04]

I used to just say that I was "allergic" to wheat, but I had trouble getting people to take me seriously (as they usually assumed I had an eating disorder or that I was just being picky) but now I say that "I have a genetic autoimmune disorder that will cause my body to attack itself if I eat wheat," and it works a million times better. I know it kind of sucks to divulge that much info to people you've just met, but using such technical language keeps them from thinking you're making it up.

I agree with this. I too had trouble getting people to understand how serious a condition I had and I found that using the bigger more scientific terms changed their perceptions. It's like if you had the flu and instead of just saying that, you said that you had the contagious influenza type A Hong Kong strain virus...I think the latter would definitely be more of an attention getter than merely saying "I have the flu". The only difference to what Laura says above is that I say that my body attacks itself if I eat gluten which is an ingredient in almost every food in the world.

I think how much you say or explain depends on who you are talking to. People who are closer to you will probably need and want a more thorough explanation and as for others, give them as much info as you feel comfortable with. Start with what I call the "blanket statement" (what Laura wrote for example) and finish saying it as matter-of-factly as possible. I find this method doesn't encourage much questioning. You say it, people go "oh" and are usually afraid to pry any further. It sounds serious, too complicated and like it's probably a personal thing that you don't want to discuss. They then move on. If they don't, it's completely up to you how much information you'd like to give them.

What others think "might" be your problem (eating disorder), doesn't really matter. Those you love and are closest to are the only ones that count, and if some of them are skeptical, simply invite them to be your guest on your next trip to your doctor's or GI's or wherever you are going to get your check ups. I think the mere invitation would be enough to make them question what they are thinking. If it doesn't, I would hope that a trip to your health provider would be a quick way to make a believer out of them. It would be sad to think that you would have to resort to this though, but sometimes the people we love the most tend to make our lives the hardest.

Good Luck

[jparsick84]

Wow, I'm surprised at some of the responses on here!

In my experience, if I tell someone I'm allergic to wheat, they take me much more seriously than saying that I have an autoimmune disorder. After I tell them I'm allergic to wheat, the next question is usually "Oh, that sucks! So what happens when you eat wheat?" I smile grimly and tell them that my small intestine will try to eat itself, causing my stomach to explode. It gets a good reaction, making them take it seriously without going into detailed, gory explanations. (Honestly, no one wants to know that it makes you have D, because it's gross - tell them you have "intestinal trauma" if you must. If they press it, give them a Look and ask "what do you Think it means?") This has saved a social situation more times than I can count.

This 2-part comment usually suffices, but if people want to know more, I then get into the "well, it's not an allergy exactly, it's an autoimmune disease. I describe it as an allergy because that's the best way most people understand it. I also can't eat oats, barley and rye."

Telling wait staff at restaurants that you are allergic is VERY helpful, because the restaurant doesn't want you to go into anaphylactic shock in their restaurant - that means a lawsuit, and that's something they want to avoid at all costs. It's a small lie of omission, but it does the job and I can enjoy my meal more.

[Tim-n-VA]

It really depends on the context as to how much detail to try to give. One middle-of-the-road explanation is allergy based since most people have a vague idea what an allergy is:

"It is like an allergy because your body incorrectly responds to something and attacks. With an allergy the body attacks the item and surrounding tissue get residual damage. With Celiac, the body attacks other parts of itself in response to the gluten."

While that is an over simplification, I find it works reasonably well because you are working from a reasonably common knowledge base.

[Welda Johnson]

I use the words "intolerant of" or "allergic to." I'm intolerant of all grains, all milk & dairy, egg whites & yeast." I now eat vegan, and some people know that term. "I eat fruits and vegetables, nuts and seeds," I might say.

Usually they ask what happens if I eat the above. I get asthma (wheezing, closed air passages, etc.). Most people understand if you keep it simple.

Here's a good sign: more and more people are mentioning the word "gluten."

We're making progress! Welda

[lizard00]

I find with most people it's like answering a child's question, make it as simple as possible. Because most people REALLY don't want a lengthy explanation or else they just get overwhelmed with something that they've never heard of. This weekend I was trying to explain Celiac to my MIL. She had heard of Gluten Intolerance, but didn't really have a grasp of what it was. Three conversations later she was starting to get it and then said that she wondered if a lot of people have food intolerances or allergies and have no idea. So, I definitely got through to her. But with someone who has no idea of gluten intolerance, or what gluten is even in, small simple doses work much better. I have made it my personal mission to educate as many people as possible about gluten, why it's overused and what Celiac is. Maybe the next Celiac/GI person they meet won't seem so out of place and they can learn more from them.

But in restaurants, like if I order a salad, I tell them to make sure there are NO croutons on my plate because they make me really sick. That's usually all they need to hear. The word sick in a restuarant is usually unwelcome.

[LuvMoosic4life]

i just find it s ohard to explain, and everyone comes off thinking i'm just a picky eater, if you're not serious enough, people will gluten you, but if you really explain whats going on, they don't want to talk to you anymore, lol when i get glutened i get very nauseous and sometimes throw up, and i don't want to have to explain that to people i just met at school or anything, but to tell you the truth, alot of people think i have an eating disorder, because i only eat salad when out, dont eat at anyones house, rarely eat in front of anyone, and then sometimes get sick after i eat!

my whole family thinks I have an eating disorder lol. I'm the only thin one and I avoid occasions with food/or am picky....it doesnt matter how much I explain...they just dont buy it..

[SunnyDyRain]

I usally say "It's like an allergy but it kills me slowly starting with my intestines instead of quickly starting with my airways"

That gets the point of "Its a bathroom issues that you prolly don't want to know the details" and "it's as serious as an allergy".

Seems to satisfy most people and those who arn't i just give more detail but that takes care of 80% of people.