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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".

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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 PDT
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 PDT
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 PDT
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 PDT
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 PDT
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 PDT
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 PDT
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 PDT
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 PDT
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 PDT
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 PDT
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 PDT
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 PDT
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 PDT
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 PDT
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 PDT
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 PDT
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 PDT
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 PDT
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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Hello Anonymous, and if nobody has said as much yet, welcome Don't worry (difficult to do when it can cause anxiety :P) it's very early days and you have a lot of healing to come. If you've not already seen it there's advice and further info here: It gets easier over time as checking becomes routine, you know your 'safe' products and your eating pattern changes. You'll get there Maybe start a thread of your own if you'd like some input from others? Finally, back on topic. My Aunt has narcolepsy and although she's fiercely resistant to giving up gluten she has now made a connnection to eating bread and it's onset. As often, not conclusive but suggestive...

Hello again Well first thing is the - Usual disclaimers apply... and this is something you have to follow up with your doctors as you know. But it's helpful sometimes to get another perspective so here's this layman see's from outside. What I have seen from the various results posted here is that people's numbers vary wildly and, just as important, the numbers often don't bear any direct relationship to the level of intestinal damage revealed via endoscopy. Ultimately although you're not scoring much above positive, you are scoring a positive and there are a couple of other risk factors you've mentioned that are suggestive if not conclusive - you have another autoimmune which raises the odds of having another one for example. You've had two tests that are positive. The purpose of taking the second test was either to invalidate or confirm the first. I'd suggest it's achieved the latter, at least inasmuch as a GI may want to check you via endoscopy. That's still the 'gold standard' of celiac diagnosis and would give you an idea if there's any intestinal damage. I suspect with 2 positive tests and the history above that's what they'll suggest. If your doctor or GI doesn't want to proceed with that you have a decision to make. Push for a second opinion or new doctor or if you're done with testing give the gluten free diet a proper try. Make a journal and see if some of those subtle things you reference may actually be symptoms. Fwiw, there are a lot of people here whose thyroid issues improved dramatically once they were gluten free, so whether celiac or gluten sensitive you should certainly give the diet a try. Only however once the testing is completed and remember:

Hi! I've just been recently diagnosed as Celiac through the whole biopsy-shebang, and I have a little bit of insight on the whole diagnosis thing and how I was eventually diagnosed, and my advice for you. Brace yourself, this might be a bit long, but it might be worth the read and I promise I will eventually get to the point. If you don't want the huge story, skip to the long line of capital As: I first saw my doctor when I had a few problems swallowing. I've compared it to when you're nervous and you feel like you have a lump in your throat - but after I eat and (sometimes) drink. I just mentioned briefly it to my family doctor when I was addressing another issue, but right away he referred me to a gastroenterologist and ordered a barium swallow x-ray test. The x-ray came back completely normal, and so the g.e. then suspected GERD, put me on acid blockers to see if they would work, no harm done sort of thing. The only thing I got out of the acid blockers were the side effects, so it was back to square 1. The g.e. said that the next test he could do was an upper endoscopy with biopsies. (hint: the celiac test!) Wanting to find a solution to my problems, the endoscopy was scheduled. Pretty painless, I was in and out in a day, but the results took much much longer. Biopsies, or the little pieces of my esophagus, stomach, and small intestine, were sent to the lab, and they came back clean. I didn't really go back to the g.e. for a whole year after that because life became busy, I wasn't prompted to follow up, and I just dismissed the swallowing problems the best I could and went on my way. Now, I've never been huge on the gluten, big bread-y sandwiches or croissants or pies were never foods that I super "enjoyed". I wouldn't feel bad after eating them, I just didn't like the taste of bread so much, but I loved cookies, cake and a lot of other things that do have gluten in them. I lead a lowish gluten life but I wasn't really monitoring it that way. Everything changed when I got really nasty (systemic) poison ivy. My eyes were swollen shut, and the rash was everywhere. I almost went to the hospital, but cooped out at the family doctor's place and got a script for prednisone (a steroid). But, I found that after I had tapered off the steroids, I had magically become lactose intolerant. So back to the family doctor again probably because I broke my toe or something, but we also got to talk about this magical lactose intolerance business (because I love anything dairy and it was indeed devastating). He was surprised as there is literally no correlation between steroids and becoming lactose intolerant. He asked me if I still had the swallowing problems, which I did, and so it was back to the g.e. for round 3. because my family doctor "does not believe in coincidences". Meeting with the G.E., he mainly addressed the swallowing problems telling me that he had done what he could to diagnose with the technology that we had at the highly specialized hospital that we were at, and I would have to travel about 3 hours away to see a different doctor who would do some tests involving the muscles in the esophagus. But right before I was about to leave, we started talking about lactose intolerance. He brought up other foods that I was avoiding (if any), and then the conversation went to gluten. I mentioned that I had an aunt that was gluten-sensitive. He advised that I do the blood test that can show an indication of celiac whenever in the future. I decided to do it that day. At this point in time, I was not eating much gluten because of the fact that it was personal preference. The normal range for values in this test is from 0 to 20. A few weeks later, I learned that I scored a 35. A second upper endoscopy with biopsies was scheduled, but this time I was told to eat a moderate amount of gluten everyday before the procedure. I ate about two slices of bread per day, which is more than I normally would. I was normal for the first two-three weeks of the gluten plus diet, but then I became really sick. I started getting the normal celiac symptoms, like diarrhea and extreme tiredness. Near the end, I had debilitating stomach pain and I was 2 times more asleep than awake each day. I couldn't do the 2 pieces of bread a day some days, but the pain was still there. I knew that I wouldn't ever have to force myself to eat bread for a test ever again. I was called a few days before my endoscopy telling me that a kid in a worse state than me had to take the OR during my time. I forced myself to eat more bread for another month and a half. The day finally came. I was diagnosed celiac, which I have concluded to be initiated by (1) the steroids/poison ivy and (2) the gluten binge fest. AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAA Celiac Disease isn't completely understood yet. Most of the time if you weren't showing symptoms when you were a baby (so your case) it means that celiac was/could be triggered by an event in your life that causes stress on the body (like stress, physical injury, etc.). The positive result that you got from the blood test doesn't automatically mean celiac, but it could. Here's some options: Talk to your doctor (or a different doctor) or even a specialist gastroenterologist (you can get a referral from a family doctor (general physician)) and see if you can do the blood test again, you have to have some kind of gluten for this to work in advance, so if you don't want to break your gluten-free streak, than don't really invest in this option. If you feel comfortable, you could even ask to do this test under a few scenarios (no gluten (now) and after a gluten binge, compare results). If you do this test and your indication is low off gluten and then high after gluten, I'd probably skip the biopsy. That's a strong enough sign that you don't need to put yourself through the painful-gluten binge. Maybe this is what that first doctor just assumed. But having that test when you haven't had any gluten could make the difference - it acts as a control. Go straight to the biopsy. You could do this, but I'd probably do the blood test first. I went through a lot of stress with the gluten-binge that you have to do to get an accurate result, you would also be breaking your gluten-free diet that may/may not be helping you right now. Do nothing, stay on your gluten free diet hoping that it is helping you. But if you are not celiac or gluten-sensitive (celiac before it starts to wreck your small intestine), going gluten free isn't healthy - you can do some research on this if it interests you. If you feel bad/unhealthy after going gluten free it's probably a sign. Good luck, also know that you might come to a point of stress in your life that can start celiac's destructive path. Ultimately, it is your body, and you should not feel forced or hesitate to act on health issues that impact you.

I'm sorry that life is so hard right now. Really. I can't imagine working 3 jobs and trying to manage this terrible illness. I think about American society and their obsession with food often. Whenever you look at the internet, there are all these fabulous gluten-free recipes, but when you don't have time or money to cook these things, a simple gluten-free lifestyle is just that - simple. There isn't a lot of variety, so it's kind of boring. But, I guess I have gotten used to being boring. I just eat corn chex and fruit or yogurt for breakfast. I eat a lot of eggs, beans, rice, corn tortillas, nuts, chicken, fruit and veggies. A loaf of gluten-free bread will last me 4-6 months in the freezer. I buy a bag of dried beans for $1.29, I soak them overnight, and put them in the crockpot the next day. I add different spices, sometimes chicken and Voila! - dinner is ready when I get home from a long day. Family gatherings are miserable and I haven't quite figured out the best way to deal yet. If my grandmother were still alive, I imagine she would be a lot like yours - well-meaning but not really able to understand the nitty-gritty. I just reassure my family that I am fine and that they really shouldn't do anything special for me. I bring a bag of Hershey's kisses or other gluten-free candy I can nibble on along with my meal and then I try to treat myself to a nicer home cooked meal later in the week when I have time to cook - because who has time to cook during Christmas???? And, I agree with knitty knitty. If someone else in your family/friends were gluten-free for medical reasons, it would make socializing a bit easier. One of my husband's good friends is NCGS. When we get together as a group, we can make each other special dishes and it helps to feel less isolated. Good luck!

Hi! Um, please forgive my quirky sense of humor..... Celiac Disease is genetic... All first degree relatives of people diagnosed with Celiac Disease should be tested for the disease, too. Gall bladder problems are often associated with Celiac Disease. Your diagnosis might save your whole family from further medical problems as they age and the disease progresses... You need to set a good example if relatives are similarly diagnosed.... and then everybody will have to eat gluten free at family gatherings....