Are You A Celiac?

[Lisa]

After many years on this forum, I have seen many personal references. What do you call yourself?

For example:

"I am Celiac"

"I have Celiac"

"I am a person who has Celiac Disease"

"I am a Celiac"

...just curious

[Jestgar]

I don't use labels. I say "gluten makes me very sick". I wouldn't say "I am a psoriatic", although I might say "I have psoriatic arthritis", but more commonly I say "corn makes my skin blotchy and my joints hurt".

[ravenwoodglass]

I usually say 'I have Celiac'.

[Lisa]

  On 10/28/2010 at 10:28 PM, Jestgar said:

I don't use labels. I say "gluten makes me very sick".

I get that and I use that when dining out, too. I throw in "very sick" as good insurance, or assurance.

But chatting on the forum here, or interviews in magazines or TV interviews...I've heard it all. Just curious how people refer to themselves.

[Skylark]

Either "I'm celiac" or "I have celiac disease". And for what it's worth, people saying "Celiac's" drive me batty. It's not a name, it's an ancient Greek word. Sorry, had to get that off my chest.

[Salax]

  On 10/28/2010 at 10:55 PM, Skylark said:

Either "I'm celiac" or "I have celiac disease". And for what it's worth, people saying "Celiac's" drive me batty. It's not a name, it's an ancient Greek word. Sorry, had to get that off my chest.

Hehe, I hear ya...people who say I have celiacs drives me nuts...it's not celiacs, it's celiac. There is no plural, unless your saying "a group of celiacs", otherwise it's singular. As: I am a celiac or I have celiac disease. It's not, I have celiacs.

Unless you are collecting a group of celiac people....then I guess I have celiacs would work..

Gets off soap box.

[Emilushka]

Hi, my name is Emily, I am Celiac, and I have a confession: I USED TO SAY "CELIAC'S" BECAUSE I DIDN'T KNOW BETTER.

I stand so very, very corrected.

I usually say "I am Celiac" or "I have food allergies" (people understand that better) or "I can't eat wheat or dairy" or "I don't eat like normal people" (for the people who really don't honestly care and are just a little confused).

[hawkgirl98]

I usually say I have a gluten allergy - as Emily said, I think people just understand the idea of a food allergy better.

I personally don't like saying Celiac because it usually requires additional explanation (most people I meet don't know what it is so when I was originally diagnosed I'd end up spending 10 minutes explaining it all). And I don't like using the word "disease" - I feel like that makes it sound scarier than it is, like I have a contagious disease or something.

[Lisa]

And I agree...there was no Doctor Called Celiac, who discovered the disease. AND I don't like the label as as "disease", either.

I rather prefer, that I am a person with Celiac Disease.

[RideAllWays]

I say I have Celiac Disease.

[cassP]

im so glad you girls mentioned "Celiac's" & "Celiacs"... so i didnt have to initiate ... i didnt want to be rude, but it does annoy me

[Mari]

I often say "I can't eat gluten". Sometimes I add "it can make me very sick"

I think that 'Celiacs' is rather cute - younger people using their own terms to both convey that this is a limiting problem and that their generation is dealing with it in their own way.

[GlutenFreeManna]

  On 10/28/2010 at 10:22 PM, Lisa said:

After many years on this forum, I have seen many personal references. What do you call yourself?

For example:

"I am Celiac"

"I have Celiac"

"I am a person who has Celiac Disease"

"I am a Celiac"

...just curious

I say "I have celiac" although I don't really tell very many people that since I'm self-diagnosed. Mostly I start out by saying I have food allergies (which is true, I'm allergic to shellfish, pork and mushrooms) and only explain further if I need to or they ask. I don't like to add the word disease on at the end and I think if I were talking about several "people with celiac" I would be tempted to say "celiacs" as in more than one person with celiac disease. I know that's probably bad, since several of you said it was annoying and impromper, but I see this as a cute short-cut to describe a group. What do you call a group of people with celiac disease when discusing celiac? It sounds very cumbersome to always have to say "individuals that have celiac disease".

[anabananakins]

I say, I don't eat gluten because it makes me sick. Then people either (a) ask me if I have celiac and I say the tests say no but since I have to be strictly gluten free, it doesn't matter much either way or ( they say what is gluten? and I say that it's in wheat, barley and rye and give them a brief run down on what it does to me. I find a lot of people take the opportunity confess that they didn't really know what gluten free meant and since I didn't really either before it's nice to be able to explain so they don't feel stupid next time.

Wheat is my country's biggest crop and it still feels a bit odd that I'll never eat it again. Wheat as an ingredient I'm used to thinking of as evil nastiness, but those fields of waving grain are supposed = wholesome goodness!

[lynnelise]

It really depends on who I'm speaking with. I usually say I have food allergies or that I cannot digest gluten. If the person has some type of medical background I will go ahead and say I suffer from celiac disease. It was not diagnosed by biopsy but it is just easier because somehow medical people don't take you seriously unless you name a diagnoses.

[Lisa]

When I make reference to my diagnosis, I say that I am a person who has developed Celiac Disease. I don't say I am "A Celiac" or "I'm Celiac". I'm not quite sure what "a celiac" is

[SaraKat]

I say I have celiac disease. I have noticed that no matter what I say people have no clue about it anyway. I still have to do further explaining. No one I talk to knows what exactly gluten is either- some think it is rice, some bread, some people say I can still eat white bread, just not wheat bread.

I wish more people knew what it was, I don't mind educating my friends/families, but the restaurant thing annoys me. I have yet to go somewhere unless they have a specific gluten-free menu that has an idea what it is without further explanation.

I wrote my first letter to a manager at a restaurant about the cluelessness of the waitstaff there. She wrote me back and told me she was going to do a training on what celiac/gluten is at their next staff meeting. So, that was good.

[cassP]

it's refreshing when you talk to someone from europe- my 2nd cousin is british, and my coworker is irish- and before i could even finish the sentence saying i cant eat wheat or gluten.. they were like- "Oh Cassie- do you think you might have Celiac??"... its a shock to hear people so knowledgeable

[Takala]

Depends on the situation, but I usually say I have auto immune disease and I'm gluten intolerant, but by being careful with what I eat, I can control the symptoms very well and I'm partially recovered, other than the arthritis.

If it's a restaurant, if they don't know, I will say "food allergy" I am allergic and cannot tolerate at all any wheat rye, barley. But I've also had some nice waiters and waitresses quiz me, and say, oh, you mean celiac or gluten intolerant ? and I really don't mind going into the details, but I'm the one who gets the neuro symptoms first, and had all the kidney problems before, so I am probably sounding sort of exotic or just weird. The more I can educate people the more likely we can eat out safely.....

[summerteeth]

It all depends who I am speaking to - if I am at a restaurant, I say "gluten allergy" (and sometimes the server will say "Oh you have Celiac?"). If it is someone I come in contact with often, I will explain it - I usually say "I have celiac disease" and go into a long, detailed, often TMI description of it . On the other hand, my fiance just says "Monica is a silly" and leaves it at that.

[kareng]

I usually say " I have Celiac Disease". I usually say that an allergy to wheat, rye and barley. I have found people don't know what gluten is.

The word I hate is " sprue". My PC doc always says , " you have Sprue". Now that I am gluten-free, rarely does anything " sprue".

[cap6]

depends on where I am. If in a restaurant then I say "extremely severe food allergies" cause that people understand. Otherwise "I have Celiac" is enough.

[Marz]

  On 10/28/2010 at 10:55 PM, Skylark said:

Either "I'm celiac" or "I have celiac disease".

I'm glad to see you and Raven refer to yourselves as celiacs (Edit - lol, hopefully that's the correct place to use the plural!) - I want to do that too, but since my tests were negative I felt bad referring to myself as having celiac disease. Although in my head I think of it as such.

I find saying "gluten-intolerant" doesn't convey the serious of the situation, it's too similar sounding to lactose intolerance - I don't do it because I get a bit of a tummy uppsy, it makes me feel like I'm dying and I'd rather not up my chances on colon cancer, thanks very much! And it's a bit of a fad at the moment to be "gluten-free" or "low-carb"...

Add to that, several people at my work are "gluten-intolerant" and they happily chow down on the cafeteria food, muffins etc. My colleagues are figuring out that I'm very serious about it though - they even ask before they grab some snacks for me, if I can eat this or that chocolate

I find that I need to do a short description at restaurants regardless of what I say, because "gluten" is not a household word, "wheat allergy" usually conveys the information nicely I guess.

[bincongo]

I guess I am a little different. I say I have to be on a special diet when they ask me why I can't eat something. If they ask for more information then I say I can't eat wheat,rye or barley because it makes me sick. If they are still curious then I explain further. At resturants I say I need to eat gluten free or I have a wheat allergy.

[jenngolightly]

  On 11/4/2010 at 12:26 PM, kareng said:

The word I hate is " sprue". My PC doc always says , " you have Sprue". Now that I am gluten-free, rarely does anything " sprue".

My doc also says that I have "sprue." Every time I hear it I imagine that I have a tree growing inside of me. :-)

It also depends on company: "I have Celiac" to most. If they look confused I just add that I can't eat wheat, rye, or barley; in restaurants I always use the word "allergy" - they pay real close attention to that word.

I don't know if any of you are in a similar situation, but I have my own office and when someone comes in to work on my computer I always make them wash their hands. I'm high maintenance!