Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Are You A Celiac?


Lisa

Recommended Posts

Lisa Mentor

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 :D


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Jestgar Rising Star

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 Mentor

I usually say 'I have Celiac'.

Lisa Mentor

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. :P

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 Collaborator

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. :ph34r: Sorry, had to get that off my chest. :P

Salax Contributor

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. :ph34r: Sorry, had to get that off my chest. :P

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. :blink:

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

Gets off soap box.

:D

Emilushka Contributor

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).


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



hawkgirl98 Newbie

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 Mentor

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 Enthusiast

I say I have Celiac Disease.

cassP Contributor

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 Contributor

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 Rising Star

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 :D

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 Explorer

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 (B) 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 Apprentice

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 Mentor

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 :unsure::)

SaraKat Contributor

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 Contributor

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 Enthusiast

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..... :P

summerteeth Enthusiast

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 :blink: . On the other hand, my fiance just says "Monica is a silly" and leaves it at that.

kareng Grand Master

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". :P

cap6 Enthusiast

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 Enthusiast

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 Contributor

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 Contributor

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

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!

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,949
    • Most Online (within 30 mins)
      7,748

    Stephanie94
    Newest Member
    Stephanie94
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Jacki Espo
      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
    • DebJ14
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.