How Do You Describe Celiac Disease When People Ask You "what's That?"

[HavaneseMom]

Hi Everyone,

 

I am wondering what your definition of Celiac Disease is when people ask you what it is?

 

After hanging out on this forum for a while, I was starting to feel like everyone in the world knows what it is, but truth be told most of the people in my area really have no idea.

 

When the subject comes up and I try to explain it to them, I end up stumbling through a explaination that must not make a lot of sense based on the looks on their faces.

 

Do any of you have a short but thorough, standard definition of Celiac that you give people when they ask you "What's That?"

 

Thanks in Advance!

 

 

[beth01]

Celiac is a disease from hell that pretty much equates to people that don't have it eating rat poison.  That is what gluten does to a celiac. That's my story and I'm sticking to it!

 

 All joking aside, it really depends who you are talking to.  Are they going to understand the constant medical terminology associated with Celiac and all your other related health issues if you have them?

 

I worked in hospitals for 16 years so I have a lot of friends that understand all the medical related crap.  I get into details with them  All by other friends I try to explain the simplest way possible.  Use words like allergic, medically necessary, explain just where gluten is found and what it does to your system. You don't have to get graphic, they don't need to know that you can finger paint with your poo and hit all colors of the rainbow in one day, but just the basics. I don't have a specific speech all laid out, but I hope that helps a little. 

 

Pretty sure someone with a more vast experience with this will give the most perfect answer.  I will also be awaiting to see what they have to say.

 

Good Luck!

[NatureChick]

I think the bigger problem is finding effective one liners to avoid talking about it.

You really don't want to have to start talking about your medical history and you don't want people to equate a weakness or disease with you. And the last thing you want to dwell on when you are socializing is what you can't eat or past health problems.

For me, a pat response to a stranger, acquaintance, or coworker might be: "I have food allergies and the risks just aren't worth the hassles. I ate before I came and have a snack with me if I get hungry." That sort of two-fold response normally does the trick of giving enough of an explanation to make them feel as if they are informed, and assures them that I'm not going hungry. And note that you don't have to tell them what foods your are "allergic" to, which also helps to cut discussions short.

Where it gets more difficult is with friends who actually care about you and your health and want to learn more. In that case - you should be able to share as much truthful information as time allows. 

For a really simple description, I might say that gluten triggers the immune system to attack, but more aggressively than is required, so the reaction goes overboard and starts attacking your body as well. The result could be any number of 200-300 symptoms that can affect any part of your body. After that, I suppose it is about answering questions as they arise. 

You may want to limit how much you talk about how your doctors having failed you in the past. My experience is that it normally results in friends trying to be helpful in coming up with ideas for what else you could try, but acupuncturists, homeopaths, nutritionists, and holistic doctors aren't any more informed about celiac than mainstream doctors and the treatment would still be the same even if you did see one.

But I think you should also prepare yourself for people NOT to care. You might expect to need to have a response ready or think that other people could benefit from learning more, but 99% of the time, you only need one sentence before they'll lose interest. You might be able to spin a medical woe into an entertaining story if you managed to really embarrass yourself in public at some point, but that is probably the only way you can turn gluten into interesting subject matter for the non-celiacs.

[KCG91]

I say that I have an autoimmune disorder which means that when I eat even a little gluten my immune system attacks and destroys the lining of the intestines, but I'm fine when I don't eat it. When people ask what gluten is I explain that it's a protein and when they ask what it's in I just say oh it's found in wheat, barley, rye and 'ordinary' oats but really if a product has an ingredients list you'd need to read it to know for sure. I find that this a. deals with 'oh but you don't look sick!' and b. puts people off cooking for me  

[across]

I'm diagnosed with NCGI at the moment, but am seeking a celiac diagnosis after a positive blood test.

 

Most of the time when it comes to food, I say, "I can't, thank you. I'm on an extremely restrictive medical diet."

 

With the few people that I've told that I might have celiac, I've said something like, "It's a disease in which the immune system overreacts to tiny amounts of gluten-- as small as a crumb, and causes damage to the small intestine that can take months to heal."

[notme]

"i have an auto-immune disease that destroys my small intestine when i eat any gluten, which is a protein found in wheat, barley, rye and sometimes oats"  then i curtsy    ta-daaaaaa....

[HavaneseMom]

Thanks everyone for the great suggestions! These ideas will be very helpful the next time someone ask me about Celiac.

[CathyO]

I've told some people that I have a disease that makes me unable to eat gluten.  I become violently ill from any trace of gluten in my food, so I have to be really careful with it.

 

I had a young woman say "I don't think I could live without bread and pasta and my carbs!"

 

I just said "I can't live WITH them.  I think if you were told what you're eating will kill you, that you'd be able to stop eating it."
She looked very thoughtful and said "Yeah, you're right."

 

When I order in a restaurant, especially when they're busy, I try to add some humor to my discussion with the server.  I want to make sure they remember me and my order.  I'll say "No croutons in my salad, please. And if you wouldn't mind, can you be sure to mix my salad in a clean bowl? No bread around my food ... don't touch bread, don't look at bread, heck, don't even think about bread when you're getting ready to serve my food."

 

My last meal out, the server came out with my food first, grinning, presented my plate with a big flourish and said "I'll have you know I didn't even THINK about bread when I looked at your food."  (I make sure to tip well for service like that!)

 

In a social situation, where it's business-related or with people I don't know, I just keep it very simple and say something like "I have some food sensitivities, and have to be very careful."  If they ask questions, I answer, but most people kind of glaze over and walk away mumbling.

 

 

[horseatemymoney]

I am usually very happy to talk to people about celiac disease.  I find that the vast majority of people that I interact with have no idea about what celiac disease is, or what it does to the body.  I see it as a way of educating people.  I keep the explination brief and try not to use medical terms if possible.  I first explain that it is an autoimmune disease, and that it causes your body to attack itself, that your body sees gluten as it sees a virus or bacterial infection.  That it affects the part of the gut that absorbs nutrients, and this can lead to lots of different symptoms.  I also explain that it only takes a small amount of gluten to trigger symptoms.  Some people leave it at that, some ask more questions. 

[1desperateladysaved]

I basically haven't worried about what to say, because nobody asks me!

[Questore]

Celiac is a disease from hell that pretty much equates to people that don't have it eating rat poison.  That is what gluten does to a celiac. That's my story and I'm sticking to it!

 

 All joking aside, it really depends who you are talking to.  Are they going to understand the constant medical terminology associated with Celiac and all your other related health issues if you have them?

 

I worked in hospitals for 16 years so I have a lot of friends that understand all the medical related crap.  I get into details with them  All by other friends I try to explain the simplest way possible.  Use words like allergic, medically necessary, explain just where gluten is found and what it does to your system. You don't have to get graphic, they don't need to know that you can finger paint with your poo and hit all colors of the rainbow in one day, but just the basics. I don't have a specific speech all laid out, but I hope that helps a little. 

 

Pretty sure someone with a more vast experience with this will give the most perfect answer.  I will also be awaiting to see what they have to say.

 

Good Luck!

 

Oh, Bethie...you made my day!

 

I am still laughing!!!

 

 

All fun aside, I say "I have a disease that makes wheat, rye, barley and oats burn the lining of my somach like acid, and makes me sick for weaks over one crumb. Can you help me?"

 

I don't even need to name the disease.

[Georgia-guy]

then i curtsy ta-daaaaaa....

That part right there had me laughing! However, I think the curtsy part wouldn't work too well for me. :-/

But what I have been saying is something to the effect of "I have a disorder that causes my body to react very badly to certain foods". (I say disorder because when I said disease people tended to back up like it was contagious...have you had your cootie shot? ;-P)

[Kias4]

I tend to say that I have a disease that makes me very sick when I eat gluten.   If they want a few more details, I'll say that I have Celiac Disease, and when I eat even an invisible trace of gluten (found in most breads, pastas, crackers, etc.), my body attacks my small intestine and it causes my whole body to react and freak out.

[Sock]

I just go straight for the TMI.

 

"imagine having the dry heaves...only with liquid fire. Now imagine that coming out the other end."

[notme]

I just go straight for the TMI.

 

POW!  lolz    you go, baby! lololz :D:D