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You Are Not A Celiac

Celiac disease has a very unique trait that I have come to notice in the years I have been involved with it: people connect to it in a way that people with almost all other diseases do not...

People with celiac disease will often say "I'm a celiac".

...but you do not hear anyone ever say "I'm a cancer" or "I'm a heart disease" or "I'm an MS".

The exceptions seem to be food related: "I'm a celiac" and "I'm a diabetic". Why do we become the disease? Is it because it affects what we are eating every day? Whatever the reason, I don't know that it's healthy.

A huge portion of regaining balance and having a healthy attitude is to heal and see ourselves as healthy again. Perhaps walking around and saying "I am x-disease" whether we're talking celiac or diabetes is not the way to go.

Not being able to eat gluten simply means something from our diet has been removed or replaced. The conversation can end there. I, for one, am going to consciously make the effort to stop saying "I am a celiac" because it doesn't define me. I am me: healthy, happy, and complete. I am not a disease.

Just food for thought and I'm so interested to know how others feel about this...

As always, Celiac.com welcomes your comments (see below).


Spread The Word



19 Responses:

 
Sandy

said this on
02 Nov 2012 10:30:26 AM PST
Jacqui,
I couldn't agree with you more! You should not allow a disease to define you. That is just one facet of our lives. So we can't eat gluten: does that make us any more special than someone with any other autoimmune disease? No, it does not. I for one do not go around announcing that I have celiac disease. I watch what I eat, exercise and follow up with my doctor once a year to get my blood work and I carry on living a full life.

 
nancy

said this on
07 Nov 2012 12:23:29 PM PST
I believe that this is easy for people who JUST have problems with the food, but what about the people who have problems with their bodies from all the past years of damage from it? I feel like I am sick and dying in one way or another from it every day, and also now I get to watch my son go through it knowing how it feels to NEVER feel good or healthy again. We will just have a tad bit better days, but never good or GREAT. I dream of that, that I will wake up and feel so great, and so will he. It's so tough watching him be sick every day, whether he stays on the diet or not, and the school, no matter how I try and talk to them, they do not care.

 
janet abbey

said this on
12 Dec 2012 1:06:40 AM PST
Nancy, may I suggest that you also look into eating on the ZONE in connection with your gluten-free diet? It is simple and just a matter of balancing carbs and proteins. 1/3 protein, 2/3 carbs. If you have to have something sweet, you can balance it with pure protein.

 
janet abbey

said this on
12 Aug 2014 10:07:07 PM PST
I have gone on to the Virgin Diet by JJ Virgin. Eliminating soy, dairy, eggs, corn, peanuts, and sugar - the key. Still working on sugar. Substituted Xylitol - low dose - sick for 3 days. I am the canary in the coal mine. Want to know if something is bad for you. Tell me.

 
Ben Young

said this on
01 Nov 2012 6:03:25 PM PST
I think you're wrong.

I would rather say "I am a celiac" than "I have celiac disease" primarily because I don't want to think of myself as "diseased," and I don't want to tell people I am "diseased." Disease has a particularly bad connotation.

But yes, celiac disease has become part of my identity because it greatly affects what I can do in a society that socializes, primarily, via food.

As for other examples that are not food related, there are plenty. Like hemophiliac. The difference is these things allow you to be perfectly healthy as long as you take care of yourself. Heart disease? Cancer? Those are the definition of being unhealthy.

 
John

said this on
05 Nov 2012 4:04:20 AM PST
Hi Jaqui,

I have to disagree.

I am a Coeliac and have been for a long time (nearly 40 yrs). Saying that "I am a Coeliac" does not "define me".

I can say that I am "Irish, Male, Christian, Husband, Father" etc etc. None of these, when said individually - "define" me.

Saying that "I am a Coeliac" merely indicates that I am a part of a group of people that cannot tolerate gluten.

I agree with Ben Young .... to say "I have Coeliac Desease" would be more indicative of thinking of myself as "diseased" and it does have a bad connotation especially in a world where celiac disease awareness is exceptionally low (when compared with heart disease, etc.)

When I say "I am a Coeliac" it is usually to alert other people that I have an issue with food (e.g. in restaurants etc.). Do I want to articulate "I have Coeliac Disease" in these types of circumstance? No! While it is a fact that I have Coeliac Disease I don't need to wear it on my sleeve - I'll stick with "I am a Coeliac".

John
Twitter: @GFLifeIreland

 
ken morton

said this on
05 Nov 2012 10:33:15 AM PST
My wife has coeliac disease, but this can also affect the family. We are constantly looking for food she can eat, either at home or out. I for one feel guilty just being able to order anything I fancy, or buy anything that suits. So you could say we are all coeliac in the house because we all muck in and help as much as we can. I constantly find myself saying 'my wife is a ceoliac', but that's life I suppose. Keep calm and carry on...

 
Jaqui Karr

said this on
07 Nov 2012 11:51:58 AM PST
Great perspectives! It sounds like for some people saying "I am Celiac/Coeliac" (without any negative feelings about it) works really well and for others not making that kind of identity tag is better. Well, chalk another item up to "no two celiacs are alike"! Thanks for your comments! Keep them coming, because it certainly helps others sort through their own thoughts and feelings on the issue...

 
Jessica Dean

said this on
08 Nov 2012 8:28:11 AM PST
I love this post! Thank you! Bringing this to my awareness made me question how I identify to others and I have to say, I don't think I've ever said, "I am a celiac". That made me feel really happy inside. I was sick for so long that I almost did start to identify myself as a walking disease. That was probably the most depressing thing about going undiagnosed for so long. And the fact that we are learning more about celiac disease hopefully means that one day people won't be waiting two or three years to find out what's wrong. They won't have time to identify as a disease. Fingers crossed!

 
Bill

said this on
08 Nov 2012 8:46:49 AM PST
I think what makes it different is celiac disease requires us to be on constant guard. It's like we carry a shield that we simply cannot let down around food, countertops or other places where we can inadvertently come in contact with substances containing gluten. When I say I am a celiac to others, it serves two purposes. It keeps me alert, as a reminder, to signs of potential hazards and it alerts others that I'm affected by something, even if they do not know what that something is. It does not define who I am, but it does define what I am and am not capable of ingesting. I wouldn't tell a fellow shopper that I'm a celiac because there is no need to do so, but in a food environment I would quickly offer that information if necessary to protect myself and inform someone else of a potentially unhealthy condition that can harm me.

I think it boils down to semantics for many, but it's not a badge of honor to wear on my sleeve or a source of pride to have to announce to someone. It's a mechanism to help us avoid danger in potentially dangerous situations where not announcing it can be far more costly than the awkwardness of the moment of doing so. Nobody thinks we're cool because we have a disease so announcing ourselves as celiacs only draws unwanted, but necessary, attention to our situation.

Saying "I am a cancer" is very different than stating you are a celiac. We can prevent danger in most instances to keep ourselves healthy. Someone with cancer has already been exposed to whatever their source of harm and is already suffering. Celiacs can avoid danger and live healthier lives as a result. Someone with cancer must travel a very difficult road, sometimes one that can be overcome, while other times losing their lives. To proclaim one has cancer or MS does nothing in the way of preventing further illness and many would just rather people did not know of their challenges. For us, others must know when we place our trust in them to prepare and deliver our foods without causing harm.

While I agree that we tend to connect to the disease, it is out of need more than any odd desire for attention. Celiac disease is scary and we are forced to trust others with our health quite often, particularly in restaurants or other food venues. Unless every meal is consumed at home, it is simply unavoidable and whether we say we are celiacs, or we just express that we have celiac disease, the battle remains the same. For those with any disease, we must pray and hope for the very best.

 
J.D.

said this on
08 Nov 2012 11:26:45 AM PST
I'm afraid this is simply incorrect from a linguistic standpoint. The suffix -ac denotes the subject affected with a condition.

See also:

hypochondriac
maniac
amnesiac
insomniac

 
Cavernio

said this on
25 Mar 2013 11:43:07 AM PST
Exactly. Celiac disease, by whoever coined it, by ending in -ac, it would actually be odd if someone DIDN'T say they were 'a celiac'. And this isn't for any conscious reason, but rather because grammar's ingrained into our language, and humans are designed to adopt language and it's accompanying grammar without thinking about it. To not adopt a grammatical rule would mean a strong societal push to not adopt it. This is scientifically studied.
That said, I personally have thought about what I should call it/myself when I found out that I was a celiac. Personally, I think people have adopted 'I am a celiac' much like 'I am a diabetic' simply because people in our society will generally take the shortest form for saying something. 'I have celiac disease' is an extra word....I think the language probably adopted the 'iac' ending to people that have a certain condition or disease because it WAS a short form. This is my personal view though.

All that aside, and returning to the OP's original idea that we, for some reason, have purposefully called ourselves the disease instead of having the disease, is a discussion I've thought about myself before. Not just for semantics, but for the idea. Specifically, in regards to another affliction I'm intimiately knowledgeable with: depression. Either someone is depressed or they have depression. In this case, and for most mental illnesses, I definitely feel that the language used more likely represents a view of the disease. There has a been a huge push to define depression as something one HAS as opposed to something one IS, and with that push there is, no question, a difference in mindset behind it. To 'have depression' implies an outside factor, an illness that the person is afflicted with, whereas to 'be depressed' implies that the person is quite upset over things that have happened in their lives, or that their mentally is depressed, both of which imply that the person can potentially change their depression by changing their thoughts or doing something happy with their lives, that it is not a medical affliction but a social/personally mental affliction.
I don't see such a difference in views in regards to celiac disease. I can only speak personally of course, but if someone says 'I have celiac disease', I think the exact same thing as if someone says 'I am a celiac'.

 
Pamela

said this on
10 Nov 2012 9:15:08 PM PST
I agree with you as well. The same goes for "I am gluten intolerant." I am... is defining who you are and putting that out into the universe. We are choosing to make these changes to be healthy and happy. We are not forced; we could do nothing and deal with those consequences, or we can make the changes and deal with those consequences. It doesn't define us, however I personally think it makes you stronger to make the change, get in tune with your body and to let it heal and be healthy.

 
Rhonda

said this on
01 Feb 2013 4:06:55 PM PST
I'm just happy I didn't die this week without knowing what was taking over my body. I spent days losing my breath, my stomach was so blown up. In three days I went cold turkey on all gluten. I can breath and feel so much better. I'm happy I am celiac and alive.

 
Kate

said this on
07 Mar 2013 11:29:45 PM PST
I was diagnosed with celiac disease in 1992 when I was five. After two years of being in the hospital for weeks at a time I went into a coma for three days before they finally realized that the bread and water diet they had me on to save me, nearly killed me. I have only met two other people with the disease and this is my first time seeing blogs or really any concern from anyone else about it. I was very surprised to see how many people have bad things to say or bicker somewhat back and forth about how awful it is and how hard it is to find food and the expenses to eat, or feeling left out. My mother would always send a pizza to school when the other kids had it for lunch and the only thing that would upset me is they thought I was lactose intolerant so they wouldn't put the cheese on. If you want talk about not having options, let me tell you if you ate gluten free bread 18 years ago you would be pumped for how much better it is today. It's always been a part of my life which without a doubt is easier than it would be if I had to switch now I understand that but I've never had any shame admitting it or saying I have it or am a Celiac. A few years ago I strayed away thinking i knew it all and was cured because I wasn't throwing up or having those horrible stomach aches. I had no idea the damage it was actually doing, the weight gain, my sense of smell was way off, dizzy spells to the point I couldn't go out with my friends, what I now know is the Celiac rash, depression and anxiety (I'm a very positive outgoing person) to the point that I would never leave my house besides work, heartburn all day everyday, an ulcer at the bottom of my esophagus, and then a fallopian tube removed due to a softball sized cyst. When my doctor told me it could be related to the Celiac I went home and researched for hours and realized I caused all of those things to happen. It broke my families heart, especially with all the other risks. There's nothing we can do to change it but having a positive outlook and appreciation for what it is so we can learn more and help others suffer less is something we can do. I am a celiac, I have celiac, I have a disease but I'm living and its wonderful.

 
Vanessa Oakley

said this on
03 Sep 2013 1:10:35 PM PST
Kate I think I love you!!! You have survived and thrived through the worst of this disease and I want to make all of the cupcakes with you! I have just started to blog for this website because I have come to a happy place in my celiac life. I am only 6 years older than you and I feel that I can learn so much from you. I wasn't diagnosed until I was in my early 20's and I have been gluten free for 12 years now.

 
Jessica

said this on
31 Mar 2013 9:29:45 AM PST
I don't have a problem telling myself or others just how it is. I have celiac disease and I can't tolerate gluten. If people don't understand (and most don't), then this is a chance to educate them and make it a learning experience. If nobody explains their seemingly strange and picky actions, then people just think you are high maintenance or OC/DC/crazy.

I feel honesty is the best policy. Use it to educate others and remind yourself.

 
said this on
26 Apr 2013 5:21:09 AM PST
I think that if I said "I have celiac disease" vs. "I am a celiac," I would be taken more seriously. It gives them one more word to wonder what on earth I am talking about.

 
Lois

said this on
14 May 2013 6:49:13 PM PST
I am the mother of a daughter with a gluten intolerance, lactose intolerance, inability to digest meat, allergies to multiple fruits, vegetables and other foods. If I knew what to say she "is" to encompass all that I would. We all have to live our lives in the best way we can. Semantics cause dissension I find, but all your points I think are good.




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