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Dealing with Denial by Danna Korn


Are you or a loved one in denial about a diagnosis of celiac disease?

This article originally appeared in the Autumn 2005 edition of Celiac.com's Journal of Gluten-Sensitivity.

You’ve all heard the joke proclaiming that “denial is not a river in Egypt.”  No, it’s not.  What it is, though, is a very real issue for many, if not most people who have been diagnosed with celiac disease or gluten sensitivity.  There are a couple of types of denial—the first type affects us—while the other type affects those around us.

When We’re in Denial
Many people who are diagnosed—or when their kids are—go through some type of denial.  It usually occurs at a few key times after diagnosis—and for a few different reasons, here are some examples:

  1. Immediate denial—the diagnosis isn’t right.  Nope.  Couldn’t be.  I don’t know anyone who has that.  I don’t even know what gluten is.  I’ve never heard of celiac disease.  I don’t have symptoms…my symptoms are mild.  It’s just lactose intolerance, I’m sure.  I don’t have diarrhea, so I couldn’t have that.  I’m overweight, and all celiacs are skinny.  My results were inconclusive.  Someone must have made a mistake.  All of these thoughts can be symptoms of denial.
  2. A few weeks into the diet—I don’t think that diagnosis was right.  This is when the reality of doing this for the rest of your life sets in.  One angel (the good one, of course) sits on one shoulder whispering, “You know you need to stay gluten-free—keep it up—you can do it! Mmmm, yummy cheese on this gluten-free toast.  The other shoulder is home to the Devil-in-Denial: “No way are you going to another happy hour and order wine and celery sticks while all the other guys are drinkin’ beer and deep-fried stuff.  You don’t have no stinkin’ intolerance.  Come on—just one beer...and one piece of pizza.  It won’t hurtcha.  No stinkin’ intolerance…”  This is really just a period of ambivalence, hoping beyond hope that you don’t really have this condition, choosing to lean toward believing you don’t.
  3. Danger zone:  I never had that.  The most dangerous type of denial occurs several months into the diet, when all of a sudden you realize you feel so good that you don’t even remember the last time you felt bad.  That’s when people often think, “I knew I just needed a little bit of time to get over that bug I had!  I feel great.  I’ll bet I never even had anything wrong with me.”
When Others are in Denial
Then there’s the type of denial that our family members and loved ones express.  Ask anyone who is gluten intolerant or has been diagnosed with celiac disease if they have relatives who won’t be tested, and chances are, you’ll get a surprised look as though you just guessed what color of underwear they’re wearing, and a “yeah, how did you know?”  Because we all have them.  Well, most of us do.  Why is it so hard for our relatives to believe they might have this?  It is, after all, one of the most common genetic diseases one can have—and it does run in the family.  Yet we’ve all heard comments like:
  • No, I don’t have that (blunt, bold, and full-on denial).
  • I don’t think I need to be tested (oh, really, and that would be because….?!?)
  • I was tested once, and the tests were negative (remember, once-negative does not mean always negative—also remember there are false negatives).
  • I was tested, and my results were inconclusive, so I don’t think I have it (inconclusive may be a euphemism for mildly positive).
  • I don’t have any symptoms (oh, really?  There are about 250 symptoms, and you have NONE?)
  • My symptoms really aren’t that severe; I can live with them (so you’ll just wait till you’re really sick and doing long-term damage to start trying to improve your health?).
  • I couldn’t do the diet anyway, so I’m not going to bother being tested (now there’s a rational argument for you).
Bottom line is they don’t want to have celiac disease, or they don’t want to give up gluten.  Some of your relatives may even refuse to believe you have it.  I’ve met many people with celiac disease who have been accused of being hypochondriacs or neurotic.

The problem with denial is that it justifies eating gluten.  When you have this epiphany “realizing” that you don’t have celiac disease or don’t need to be gluten-free, it’s tempting to run, not walk, to the nearest Krispy Kreme outlet.

Resist the temptation.  If you’ve been on the diet for awhile, then yes, you feel great, but it’s because you’re not eating wheat or gluten, not in spite of it.  The danger in testing the waters is that you may not have any reaction when you do, and then you’re likely to jump to the obvious (by which I mean “desired”) conclusion and confirmation that you never needed to eliminate wheat or gluten in the first place.

If you still wonder whether or not you have a medical reason for cutting gluten from your diet, here are a few things you can do to help solidify things in your mind:

  • Get properly tested.
  • Get a second (or third) opinion.
  • Talk to other people who have been diagnosed with the same condition about your symptoms and your feelings of denial (chances are they’ll grin and say, “Yep, I felt that way at one point, too”).
  • Write it down: List your symptoms, the symptoms of the condition, and how you feel if you’ve been following the diet.  Sometimes seeing it in writing is the just the proof you need.
Denial, by the way, is one of the most compelling arguments in support of proper testing and diagnosis.  If you’ve been confirmed with a diagnosis, you may be tempted to fall into a state of denial, but it’s going to seem pretty silly, even to you.

But also keep in mind that if you’ve been tested and your results were inconclusive or negative, you may need to consider re-testing or other alternatives.  The tests have changed over the years, and maybe your tests were done long ago.  There are also false negatives; and you can be triggered at any point in your life, so just because you were negative once doesn’t mean you’ll be negative again.  And finally, there are people who are negative on all of the tests, yet their health improves dramatically on a gluten-free diet.  Go figure.

Remember, if it looks like a duck, walks like a duck, and quacks like a duck, it’s most likely a duck, even if you wish it were a pigeon.

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17 Responses:

 
Lori Grimaldi
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said this on
09 Aug 2010 6:36:22 AM PST
This is an excellent article, because it tells you, smack in the face what it feels like after being gluten-free for a time. You are fooled, you feel good and want the good stuff. The thing to remember is those very dark days of feeling awful and a prisoner in your bathroom. It will snap you right back! It is just not worth getting off the gluten-free way of life! Hope this helps.

 
Loke
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said this on
09 Aug 2010 10:10:57 AM PST
My late husband was convinced that if I ate a little it would go away and refused to be careful about gluten. I also went o doctor who told us that I would eventually be able to add gluten back to my diet. This made life very difficult for me. Furthermore, when I visited my parents last year, my mom insisted on eating out all the time and I got sick!!!!!!! And still she insisted. This is a huge issue for those of us who who are really sensitive and cannot have any gluten in our diet at all........

 
Kay
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said this on
09 Aug 2010 5:43:16 PM PST
This is the first time I visited this site, great article. I have never knowingly cheated on the gluten-free diet, there was no looking back, but the rest of the world treated me like a raving nutcase.

In my early coeliac days my worst enemy was my husband spreading his crumbs, just adding that one ingredient when I cooked something and polluting a whole casserole. And then came that fabulous day (not that I wish the man I love ill but....) when he was diagnosed as gluten intolerant. Now we are our own best supporters.

 
Heidi
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said this on
09 Aug 2010 6:50:00 PM PST
I have celiac disease and while I never had any problems giving up gluten foods, I'm frustrated with people around me who don't take this disease seriously. Just because I don't drop dead after eating one cookie doesn't mean it does no damage. I was diagnosed as an adult and it's been a long road trying to bring my body back to health. I am not about to take even a tiny step backwards.

 
Leila
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said this on
13 Aug 2012 9:16:27 AM PST
I have celiac disease and absolutely hate it when people at restaurants dont take it seriously because they think you're making it up.Why do they think that, I have no idea.
Also, I once ordered chips with a few slices of at a restaurant where I couldn't eat anything else. When they arrived I realized I had forgotten to ask whether they had gluten or not. When the waitress said yes and I told here I couldn't eat the chips,"could I just have some uncontaminated bacon on it's own please?", she looked at me like I came from mars, realized she was staring at me and walked off. Five minutes later the same waitress comes back with the bacon, chips and cheese dish. I was so MAD at her! I just smiled, walked to the nearest fish and chip shop, bought a back of chips and ate them, in the restaurant.

 
Julie
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said this on
09 Aug 2010 7:44:42 PM PST
I just got so sick of being sick I went off dairy first, got even worse (afraid to go out, doubled over in pain kind) so I then went off gluten. Yes, I had both positive and negative bloods.

The worst kind was convincing my partner how sick I actually was, now he accepts my son and I both have it, especially now I've gotten diagnosis for other related issues like sjogren's syndrome... but is still in denial the other kids probably have it - all have symptoms but are different.

 
michelle
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said this on
09 Aug 2010 8:45:01 PM PST
I'm glad I'm not the only one with denial. I follow the diet, when I get tempted, I just remember, how tired I was, of all the pain and time I would have to spend in the bathroom.

 
Florence
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said this on
09 Aug 2010 9:35:07 PM PST
I highly recommend this article. I remember the stages presented in the article. The sooner that we face the reality
the healthier we will become. Eating out is more difficult.

 
Sandy
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said this on
10 Aug 2010 7:09:53 AM PST
Great article and good point! I've seen patients diagnosed with celiac as late as 80 years old. It is wonderful to see food companies starting to make gluten-free products, and some restaurants are starting to serve gluten-free items. Hopefully more will join and make it easier to keep gluten-free.

 
Tracy
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said this on
10 Aug 2010 11:11:32 AM PST
Thank you for writing this. The psychology of people with gluten sensitivity--pre and post diagnosis-- is a huge issue. You have written useful exploration of a common problem. It doesn't help that so many doctors are uninformed about gluten sensitivity and are not good guides for their patients on the path towards gluten-free health.

 
Michelle
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said this on
10 Aug 2010 6:09:04 PM PST
This was an Incredible article - Thank You! I am saving this writing and plan on storing some of it to memory as artillery for times of need. As someone else said, it was "in your face" .... A Needed "in your face". No beating around the bush - I appreciate it.

 
Tracy
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said this on
11 Aug 2010 7:07:06 AM PST
Thank you Ms. Korn, for another informative article. Having recently been diagnosed after years of symptoms (the earliest issues popped up as an infant), I too went through these stages. I believed that it was always something else after the doctor confirmed it. As recently as last year, I "tested" whether I was sick (and paid dearly--by the way,my husband now calls me Chalupa Baby <wink>). Now, I'm strictly gluten-free and even watch the products I put on my skin (which I didn't do at first either).

Thank you again. Hopefully others recently diagnosed that read this will not have to go through the later stages of denial after reading others' experiences posted along with your article.

 
Sarah Bosse
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said this on
18 Aug 2010 6:44:22 PM PST
Excellent article! Please continue addressing the issue of denial and celiac disease / gluten intolerance One of my parents believes I have celiac. The other is not supportive. Regardless, I continue living gluten free because it's not just a fad for me - it's literally life or death. At very least, it comes down to quality of life or the misery of (a slow and painful) death. How to continue to address the issue of my parent's denial and ask them to get tested to decrease their potential risk for stomach/intestinal cancer is important to me. Thank you for being real with readers!

 
Pari
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said this on
18 Aug 2010 9:21:12 PM PST
Once I realized what was wrong with me, I never had any problem accepting it. My real problem was other people. Friends pressured me to eat just a little wheat, pray to God, and actually gave me a huge guilt trip because I was "anti-American" in my eating. How could I possibly give up bread, pizza, cake, cookies etc. At work I got sick just being in the break room where wheat was everywhere at all times. I couldn't go out to eat at a restaurant any longer, even chosing gluten free on menus, due to cross contamination. People I knew would actually sneak wheat flour into my meals when I ate at their homes, knowing of my condition. I have the worst symptoms, and the last big "event" I had a few years ago pieces of my intestine came out. So now my husband and daughter don't bring anything with gluten into the home and I just don't eat out. I also stay away from places where wheat is prepared, even if its friends homes. Its sad, but necessary. I don't want to die.

 
Caroline
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said this on
22 Aug 2010 12:35:58 PM PST
I have not been diagnosed with coelic (tests being done after I self diagnosed) however since giving up gluten and dairy I have put weight on. I am also frustrated at the lack of knowledge by the catering industry and how flippant they are when they admit to adding gluten or dairy into a dish after clearly stating your intolerance to them.

 
Mary
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said this on
27 Sep 2010 8:12:58 PM PST
I've have been feeling so sick and tired of feeling sick and tired I can not believe I finally have some answers to the questions I have had for all my doctors for many years.I am not at all in denial but I am in the anger stage. Why do doctor just blow you off when you ask why do I feel to drained and exhausted. I actually had a doctor tell me look at all you are doing I'd be tired too and that was that. I thought it was my thyroid but my tests came back in normal range. Finally I got a nutritionist and she understood me and diagnosed my celiac disease. In two weeks on my new lifestyle of eating I feel terrific. I no longer want to eat my old way cause I know how that would make me feel. I'm going to start a support group in my area. I am most grateful.

 
Liz
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said this on
02 Nov 2010 7:11:06 AM PST
I've been diagnosed with celiac disease for almost 2 months. At first my friends and family told me to look for a second opinion because we were in denial, I couldn't believe it that after 33 years of eating normal food I will be diagnosed not to do so any longer. I got to admit, it is hard when we out, on a bbq or we get invited to a birthday party. I feel sometimes depressed of why my lifestyle has changed, but on the other hand I want to be healthy and I am doing whatever it takes. I have two precious sons who are the biggest incentive in my life. Now my friends understand better how serious this disease can be and get-togethers are much comfortable as everyone incorporates gluten free foods to make me feel part of the group... Reading labels is becoming second nature and before i try anything I read them to make sure is safe for me... I always think, "it could have been worse", & that encourages me even more.




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