• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Member Statistics

    77,741
    Total Members
    3,093
    Most Online
    Laura Hoffman
    Newest Member
    Laura Hoffman
    Joined
  • 0

    Dealing with Denial by Danna Korn


    Danna Korn
    Image Caption: 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.


    Ads by Google:




    ARTICLE CONTINUES BELOW ADS
    Ads by Google:



    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.

    0


    User Feedback

    Recommended Comments

    Guest Lori Grimaldi

    Posted

    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.

    Share this comment


    Link to comment
    Share on other sites

    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........

    Share this comment


    Link to comment
    Share on other sites

    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.

    Share this comment


    Link to comment
    Share on other sites
    Guest Heidi

    Posted

    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.

    Share this comment


    Link to comment
    Share on other sites
    Guest Julie

    Posted

    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.

    Share this comment


    Link to comment
    Share on other sites
    Guest michelle

    Posted

    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.

    Share this comment


    Link to comment
    Share on other sites
    Guest Florence

    Posted

    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.

    Share this comment


    Link to comment
    Share on other sites

    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.

    Share this comment


    Link to comment
    Share on other sites

    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.

    Share this comment


    Link to comment
    Share on other sites
    Guest Michelle

    Posted

    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.

    Share this comment


    Link to comment
    Share on other sites

    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 ). 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.

    Share this comment


    Link to comment
    Share on other sites
    Guest Sarah Bosse

    Posted

    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!

    Share this comment


    Link to comment
    Share on other sites

    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.

    Share this comment


    Link to comment
    Share on other sites
    Guest Caroline

    Posted

    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.

    Share this comment


    Link to comment
    Share on other sites

    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.

    Share this comment


    Link to comment
    Share on other sites

    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.

    Share this comment


    Link to comment
    Share on other sites
    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.

    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.

    Share this comment


    Link to comment
    Share on other sites


    Your content will need to be approved by a moderator

    Guest
    You are commenting as a guest. If you have an account, please sign in.
    Add a comment...

    ×   Pasted as rich text.   Paste as plain text instead

      Only 75 emoji are allowed.

    ×   Your link has been automatically embedded.   Display as a link instead

    ×   Your previous content has been restored.   Clear editor

    ×   You cannot paste images directly. Upload or insert images from URL.


  • Ads by Google:

  • About Me

    Danna Korn is the author of “Living Gluten- Free for Dummies,” “Gluten-Free Cooking for Dummies,” “Wheat-Free, Worry-Free: The Art of Happy, Healthy, Gluten-Free Living,” and “Kids with Celiac Disease: A Family Guide to Raising Happy, Healthy Gluten-Free Children.” She is respected as one of the leading authorities on the gluten-free diet and the medical conditions that benefit from it.

  • Popular Contributors

  • Ads by Google:

  • Who's Online   17 Members, 1 Anonymous, 876 Guests (See full list)

  • Related Articles

    Danna Korn
    About Danna Korn
    Danna Korn is the author of Kids with Celiac Disease: A Family Guide to Raising Happy, Healthy Gluten-Free Children, published by Woodbine House; and Wheat-Free, Worry-Free: The Art of Happy, Healthy Gluten-free Living, published by Hay House. She has written dozens of articles on gluten-free living that have been published in national magazines and newspapers, and appears frequently on national and local broadcast media in an effort to raise awareness of celiac disease. Danna has been researching celiac disease since her son, Tyler, was diagnosed with the condition in 1991. That same year, she founded R.O.C.K. (Raising Our Celiac Kids), a support group for families of children on a gluten-free diet. Today, Danna leads more than 65 chapters of R.O.C.K. throughout the nation. She speaks frequently around the country to health care professionals, celiacs, parents of celiacs, parents of autistic kids involved in a gluten-free/casein-free dietary intervention program, and others on a gluten-free diet.
    Danna lives in Encinitas, CA with her children, Tyler and Kelsie.

    Danna Korn
    A must-read survival guide for parents, friends, teachers, and caretakers.
    Kids with Celiac Disease is a practical survival guide for families of children and teenagers with this lifelong digestive disorder. While it sounds as though it is only applicable to children with the condition, Kids with Celiac Disease is loaded with valuable information for people of any age - as well as for people on the gluten-free diet for reasons other than celiac disease. Written by the mother of a celiac child diagnosed in 1991, Kids with Celiac Disease is a compilation of 10 years of experience and research. Danna founded R.O.C.K. (Raising Our Celiac Kids) in 1991, and incorporated much of what she has learned from other parents into this book.
    Kids with Celiac Disease includes:
    Practical suggestions for dealing with school, sitters, birthdays, holidays and other unique challenges Menu and snack ideas Emotional and psychological implications How to talk with friends and family Eating out at restaurants Travel tips Up-to-date scientific, medical and nutritional information A resource guide listing contact information for hundreds of resources that are valuable to anyone on a gluten-free diet. Click here to order!

    Danna Korn
    Our story began when our first child, a perfect baby boy, began to get sick. It started benignly enough, with more than just a touch of diarrhea, which the doctors attributed to the antibiotics he was taking for ear infections. When time was up on our allotted four-minute visit, we were told to keep an eye on it and call them if it didnt go away in a couple of weeks.
    What we were supposed to keep an eye on, Im not sure. The piles of diapers that we had to haul out every afternoon? The lovely rhinoceros-skin texture that my hands were assuming, thanks to the extra washings? Or maybe the water bill that had skyrocketed because of the additional laundry I was doing when the Pampers just couldnt accommodate the excess loads they were being asked to hold. In any case, they had told us to call if the diarrhea didnt go away in a couple of weeks, so we did.
    Apparently, what they meant to say was, well tell you to call if it doesnt go away just go get you out of our office feeling like we did something, but really wed rather you dont bother us because all were going to do is give you another obligatory four minutes listening to you whine and then tell you is that theres nothing wrong. Why cant people just say what they mean?
    Instead, I endured the heavy sighs of the receptionist who took it upon herself to play doctor and say, You mean youre bringing him in again just because of diarrhea? Well, yeah. Thats what I was told to do! Several heavy sighs and even an I-hate-neurotic-new-moms-snicker later, we had an appointment - for three weeks out.
    The second visit was, as I eluded to, an obligatory waste of time. After looking in Tyers ears, nose, and throat (did I lead you, Doctor, to believe that this problem was above his waist?!?), the doctor concluded that there was nothing to be concerned about. Oh, really? I guess its normal to be changing 22 diarrhea diapers a day? I dont think the doctor was amused when I offered to present him with a stool sample, since I was sure in the next ten minutes we would have one that we could examine together. No, I was sent away and told, once again, to call if the situation didnt improve in the next two weeks. Yeah, sure. Ill be sure to do that.
    It was with sadness and grief that I realized this pediatrician whom I had hand-selected after interviewing no less than 12 in the area, and who had offered a congratulatory hugs less than 12 minutes after Tyler was born, was not listening to me. It was time to find doctor-number-two.
    Sadly, our experience with doctor-number-two was a repeat of that with number-one. A quick looks in the ears, nose, and throat, followed by a declaration that we had a healthy baby boy sent my blood pressure skyrocketing. But what about the diarrhea I mentioned? I managed to ask with control worthy of the Nobel Peace Prize. Really, diarrhea is nothing to worry about unless the child is severely dehydrated and losing weight, I was told, as though I had the I.Q. of a water bottle. Well, Ive been force-feeding water to avoid dehydration, I explained, thinking that might make him realize that there was a reason Tyler wasnt shriveling up from thirst. Oh, good, he replied as he raced out the door to his next four-minute appointment. Keep it up and call me in two weeks if the situation hasnt improved. Ugh.
    After a few months, several hundred dollars worth of diapers, and cracked and bleeding hands, we switched to doctor-number-three. We chose a woman this time, figuring maybe some element of womans instinct or a maternal inkling would alert her to what we believed was a worsening condition. Well, hes in the 75th percentile for height and weight, she declared after looking in his ears, nose and throat. Certainly nothing to worry about with this bruiser, she gloated. Trying to be patient, hiding the clenched fists, and managing a smile that was as sincere as that of a politician running for office, I replied, But he used to be in the 98th percentile. Wouldnt that indicate weight loss, which could be a sign of something wrong? Oh, honey, dont be ridiculous! What do you want, a prize fighter? Hardy, har-har. I had a real Carol Burnett on my hands. Again, we were sent away and - you know the rest.
    And so it was. There was nothing wrong. Never mind that he had been loading up 22 diarrhea diapers a day for the last nine months - apparently he was just a poop machine. Never mind that his belly had grown distended to the point that he couldnt bend over and pick up his toys. Never mind that his arms and legs were skinny - hey, he was still in the 70th percentile for height and weight, and its not like I was trying to raise a prize fighter or anything.
    So it was without a care nor a complaint that I dragged my irritable, listless little Biafra baby into the office of doctor-number-four, a doctor to whom we were assigned when we changed insurance plans. After looking in Tylers ears, nose and throat, he laid Tyler down on his back and thumped on his belly like you might thump a honeydew melon to see if its ripe. My goodness, he said with that Im-alarmed-but-Im-a-doctor-and-dont-want-to-freak-you-out-so-Ill-smile-smugly-and-act-calm voice, Whats going on with his belly? I couldnt answer through the tears of relief.
    Relief turns to terror
    I never thought Id be so excited to be referred to Childrens Hospital. I called my husband with the good news. Sweetie, guess what?!? We have to go to the hospital! I announced as though we had just won the lottery. Never quite sure how to respond to my usually-overly-enthusiastic-and-not-always-sensical proclamations, he replied, as usual, with caution. Really? Is that a good thing? I guess in retrospect it wasnt a dumb question, but at the time it deserved, DUH! Were going to see the gastroenterologist!
    On the drive to the hospital, we sung the I love you song with such glee that it made Barney look like a candidate for Prozac. Were going to the hospital to see the nice doctor whos going to help us make you feel better, I sang to the tune of whatever I could come up with on short notice. Tyler, 18 months old then, sang too, and we practically danced into the doctors office for our first visit with the gastroenterologist.
    Somehow a three-hour wait in a doctors waiting room does a lot to dampen enthusiasm. Our gastroenterologist didnt even look in Tylers ears, nose or throat, a small favor for which I could have kissed him, even as tired and hungry as I was. He did do the honeydew thump on Tylers belly, and asked how long he had been experiencing diarrhea. Oh, about nine months now, I commented. Nine months? he asked. The large eyes and knitted eyebrows spoke for him, so he didnt have to finish his thought, which was obviously, Why did you wait so long, you oblivious, inexperienced nitwit?
    We were told that a variety of tests needed to be run. He tossed around names of these tests: upper G.I., lower G.I., ultrasound, serology, endoscopy, biopsy fecal fat, enzyme panel, WBC, and sweat test. Thinking maybe I had slept in those days during my Bio 101 classes in college and not wanting to admit it, I said, Oh, right. So that means youre testing for.... as though the condition was right on the tip of my tongue and I just couldnt recall it. He saved me the awkward silence that would have ensued and filled in the blanks. Were going to be looking at a number of possibilities: blood diseases, cancer, cystic fibrosis...that sort of thing. I thought I was going to faint.
    The bittersweet diagnosis
    After signing reams of release forms that we never read, and allowing doctors to poke, prod, anesthetize and scope our baby, we finally got a call from the doctors office asking us to come in for a consultation with the gastroenterologist. Well, cant you just tell me what it is on the phone? I asked. No, he wants you to come in, the receptionist told me. But is that a bad thing? Wouldnt he just call to tell me nothings wrong if my baby was okay? I began to panic.
    After a three-day wait in the waiting room (okay, it just seemed like three days because hours spent waiting in a 4 X 4 cubicle with an 18-month-old are automatically quadrupled in value), we finally saw the doctor and heard the words that would change our lives forever. Your son has celiac disease. Huh? Is that anything like a flu bug? Surely there was a pill we could give him that would make it all better. It simply requires a dietary change... Okay, so maybe we overdo the goldfish-shaped crackers a little - we can do without for a few weeks. ...he wont be able to eat gluten for the rest of his life.
    Back up the truck here, Mister. Rest of his life? Gluten? Is that anything like glucose? Because we can surely cut down on sugar....
    In a state of shock, we were directed down the hall to the hospital dietitian. Without looking up, she put her hand out, presumably wanting the chart that we had been instructed to give to her. Still in a daze, we handed her the chart. Several seconds of silence passed - had she fallen asleep? Was she writing her grocery list? Had she forgotten we were there? Finally, she said, So you need information on the gluten-free diet, huh? Dont get many of those. Really? I asked. How many have you had? None.
    She handed us a crumpled blue piece of paper that had writing on both sides. The first side, filled with size-two font, listed the foods and ingredients we were to avoid. The other side had size 48 font, presumably in an effort to make the page look full, and was titled, Acceptable foods on the gluten-free diet. There were six items on the list.
    Our first shopping trip
    Still resembling a zombie, I realized I had an 18-month-old child to consider, and he had been through as much as we had, so I asked what he wanted to do. Get a tweat! Cwackews! he replied (translated to treat and crackers for those of you whose kids are over 12). Not a bad thought. We had to learn how to shop sometime, so off we went on our first gluten-free shopping expedition.
    Armed with our crumpled blue sheet, we started in the cracker aisle. Carefully reading labels, I was amazed and delighted to find that not a single package had gluten in the ingredients list! How easy was this going to be! Lest you think that I do have the I.Q. of a water bottle, you have to remember that I was till in a state of shock, topped off with a touch of denial.
    I consulted my trusty blue sheet and realized that flour was, indeed, buried in the size-two-font list of forbidden ingredients, and put back all the crackers I had tossed into the cart. We went up another aisle. Pretzels...nope. Bread...not even close. But Mommy, I just want a tweat. Tylers patience was wearing thin. In desperation, I picked up a bag of Fritos. Could it be? Really? Surely I missed something. No, it was true. Not a single gluten molecule to be found! Hallelujah. I grabbed seven bags and headed for home.
    Ten years later...
    The beauty of living with the gluten-free diet is that you learn to love the gluten-free diet. Not only is it a medical necessity in our family, but it is a healthy way of life. Sometimes when I think, If only I could not have to worry about making tonights meal gluten-free, Id make..... WHAT? What WOULD I make? Would I make macaroni and cheese out of a box? Ick! Would I make spaghetti? So what! The gluten-free stuff is just as good these days. Would I make a quick trip to Kentucky Fried Chicken or a pizza place? Oh, now theres a healthy meal. We put so much emphasis on making healthy meals that we wouldnt do those things anyway (well okay, every now and then maybe!).
    We are so fortunate to live in a time when celiac awareness is at an all-time high. Gluten-free foods are delicious and readily available. Customer service reps actually know what were talking about when we ask if their products are gluten-free. Cookbooks and resource books abound, as do support groups and seminars.
    Most of all, those who are diagnosed are the lucky ones. No longer do they have to wonder why theyre fatigued, depressed or suffering gastrointestinal distress; they can rest assured knowing their gluten-free diet is preventing them from being more susceptible to conditions such as intestinal lymphoma, infertility, and osteoporosis.
    Yes, this diet can be a pain, but follow the mantra and you will be liberated. No longer will the diet control you, but you will control your diet. So....all together now ... Deal with it; dont dwell on it!

    Danna Korn
    This article originally appeared in the Winter 2004 edition of Celiac.com's Journal of Gluten-Sensitivity.
    Celiac.com 10/04/2010 - When Tyler was diagnosed with celiac disease at the age of 18 months, I wanted desperately to talk to a kid––one who could talk––about what it’s like to have celiac disease.  Do you feel jipped?  Does it make you sad?  Do you feel “different” from the other kids?!?  I was heartbroken––grief-stricken––I had a long way to go before I would evolve into the cheerleader I hope I’ve become in helping people live––and love––the gluten-free lifestyle.
    Oh, sure, friends and family told me “it would be okay,” the way friends and family do in tough situations.  But I felt they were just placating me––after all, what did they know?  They hadn’t even heard of celiac disease before I had explained the diagnosis.  And to be honest, I didn’t care much at that time about what adults thought of the situation––I wanted desperately to hear from a kid: “Look at me––I turned out just fine!”
    That was nearly 13 years ago, and there weren’t any kids who had celiac disease––none that I knew of, anyway.  So we blazed our own trail, working hard to approach our unique challenges with optimism each and every step of the way.
    Recently, I was reminded of the way I felt when Tyler was first diagnosed, when a woman with tears in her eyes approached me after one of my talks.  “I know you talk about how we can all learn to live and love this lifestyle, and I appreciate your suggestions for raising happy, healthy, gluten-free kids––but,” she seemed shy and embarrassed to continue, looking at the floor as she asked, “would you mind if I talked directly to Tyler?”
    But of course!  How could I have forgotten?  That need to talk to a child who had been through it was so compelling at first––and now Tyler could talk!  Sure you can, was my automatic reply, knowing that my 14 (and-a-half) year-old-I-at-least-like-to-pretend-that-everything-you-do-annoys-me son would be less than thrilled to take the call. 
    I would love for Tyler to write an article telling you how celiac disease is no big deal in his life.  He did so a few years ago for my first book, “Kids with Celiac Disease,” when he wrote Chapter One:  “What it’s like to be a kid with celiac disease,” but that was when he was only ten.  That was before he turned into a teenager and had to start pretending not to want to do the things we ask him to do.
    The truth is that this has never been a big deal for Tyler.  We gave him control of his diet from day one, which I believe is crucial.  We have always maintained an optimistic, yet realistic approach, with Tyler and his non-celiac but oh-so-supportive sister Kelsie, her being our guiding light in terms of inspiration and positive attitude.
    One day, a few months after he had been interviewed on a local TV station, Tyler was approached by a woman who attended one of our R.O.C.K. (Raising Our Celiac Kids) parties.  I watched with curiosity and felt somewhat protective and guarded as this woman I didn’t know quickly approached him and took one of his hands in both of hers in what seemed to be an affectionate gesture.  “Tyler, you have changed my life,” she said boldly.  Then 13 years old, he did what most 13-year-old boys might do, and said nothing––shooting an anxious glance my way, looking for guidance, but I was as bewildered as him.  She began to get tears in her eyes as she continued.  “I’m 65 years old.  Three months ago, I was as sick as I could be.  I had been to dozens of doctors, and had a list of symptoms a mile long.  Everyone thought I was crazy––I even had to quit my job, because I was so sick.  I truly wanted to die.  Then I saw you on TV talking about celiac disease.  I insisted on being tested, and was positive for celiac disease.  I’ve been gluten-free ever since, and feel absolutely wonderful.”  With that, she gave him a bear hug, and he shot me a glance that I couldn’t read. 
    I’ve learned not to embarrass my kids (well, sometimes I do it intentionally, but that’s another story), so I said nothing, and Tyler went about his business.  Several minutes later, Tyler approached me with a beaming smile.  “Mom, now I know why you do this!  It feels really good to help other people!” 
    He has since decided that he’s blessed to have celiac disease, because it has provided him with an opportunity to reach out and help others––an act that even at his young age he realizes is as satisfying for him as it is for those he helps.  Quite a perspective for a teenage boy, if I may brag about him a little!
    So while I would love for Tyler to write an article about this, those of you who have teenagers understand that it would be easier to teach my dog quantum physics than to have him sit down and write an article––so you’ll have to take my word for it.  Thankfully, at this point, Tyler is a happy, healthy, gluten-free young man who thinks a lot more about baseball and his friends than he does about the restrictions of his diet.  Other kids, teens, and young men and women I’ve met over the years have been equally optimistic and inspiring.  So rest easy, parents––your kids will, in fact, be just fine…and I really do know this!


  • Recent Articles

    Roxanne Bracknell
    Celiac.com 06/22/2018 - The rise of food allergies means that many people are avoiding gluten in recent times. In fact, the number of Americans who have stopped eating gluten has tripled in eight years
    between 2009 and 2017.
    Whatever your rationale for avoiding gluten, whether its coeliac disease, a sensitivity to the
    protein, or any other reason, it can be really hard to find suitable places to eat out. When
    you’re on holiday in a new and unknown environment, this can be near impossible.
    As awareness of coeliac disease grows around the world, however, more and more cities
    are opening their doors to gluten-free lifestyles, none more so than the 10 locations on the
    list below.
    Perhaps unsurprisingly, the U.S is a hotbed of gluten-free options, with four cities making the
    top 10, as well as the Hawaiian island of Maui. Chicago, in particular, is a real haven of
    gluten-free fare, with 240 coeliac-safe eateries throughout this huge city.
    The super hip city of Portland also ranks highly on this list, with the capital of counterculture
    rich in gluten-free cuisine, with San Francisco and Denver also included.
    Outside of the states, several prominent European capitals also rank very highly on the list,
    including Prague, the picturesque and historic capital of the Czech Republic, which boasts
    the best-reviewed restaurants on this list.
    The Irish capital of Dublin, meanwhile, has the most gluten-free establishments, with a huge
    330 to choose from, while Amsterdam and Barcelona also feature prominently thanks to their
    variety of top-notch gluten-free fodder.
    Finally, a special mention must go to Auckland, the sole representative of Australasia in this
    list, with the largest city in New Zealand rounding out the top 10 thanks to its 180 coeliacsafe
    eateries.
    The full top ten gluten-free cities are shown in the graphic below:

     

    Jefferson Adams
    Celiac.com 06/21/2018 - Would you buy a house advertised as ‘gluten-free’? Yes, there really is such a house for sale. 
    It seems a Phoenix realtor Mike D’Elena is hoping that his trendy claim will catch the eye of a buyer hungry to avoid gluten, or, at least one with a sense of humor. D’Elena said he crafted the ads as a way to “be funny and to draw attention.” The idea, D’Elena said, is to “make it memorable.” 
    Though D’Elena’s marketing seeks to capitalizes on the gluten-free trend, he knows Celiac disease is a serious health issue for some people. “[W]e’re not here to offend anybody….this is just something we're just trying to do to draw attention and do what's best for our clients," he said. 
    Still, the signs seem to be working. D'elena had fielded six offers within a few days of listing the west Phoenix home.
    "Buying can sometimes be the most stressful thing you do in your entire life so why not have some fun with it," he said. 
    What do you think? Clever? Funny?
    Read more at Arizonafamily.com.

    Advertising Banner-Ads
    Bakery On Main started in the small bakery of a natural foods market on Main Street in Glastonbury, Connecticut. Founder Michael Smulders listened when his customers with Celiac Disease would mention the lack of good tasting, gluten-free options available to them. Upon learning this, he believed that nobody should have to suffer due to any kind of food allergy or dietary need. From then on, his mission became creating delicious and fearlessly unique gluten-free products that were clean and great tasting, while still being safe for his Celiac customers!
    Premium ingredients, bakeshop delicious recipes, and happy customers were our inspiration from the beginning— and are still the cornerstones of Bakery On Main today. We are a fiercely ethical company that believes in integrity and feels that happiness and wholesome, great tasting food should be harmonious. We strive for that in everything we bake in our dedicated gluten-free facility that is GFCO Certified and SQF Level 3 Certified. We use only natural, NON-GMO Project Verified ingredients and all of our products are certified Kosher Parve, dairy and casein free, and we have recently introduced certified Organic items as well! 
    Our passion is to bake the very best products while bringing happiness to our customers, each other, and all those we meet!
    We are available during normal business hours at: 1-888-533-8118 EST.
    To learn more about us at: visit our site.

    Jefferson Adams
    Celiac.com 06/20/2018 - Currently, the only way to manage celiac disease is to eliminate gluten from the diet. That could be set to change as clinical trials begin in Australia for a new vaccine that aims to switch off the immune response to gluten. 
    The trials are set to begin at Australia’s University of the Sunshine Coast Clinical Trials Centre. The vaccine is designed to allow people with celiac disease to consume gluten with no adverse effects. A successful vaccine could be the beginning of the end for the gluten-free diet as the only currently viable treatment for celiac disease. That could be a massive breakthrough for people with celiac disease.
    USC’s Clinical Trials Centre Director Lucas Litewka said trial participants would receive an injection of the vaccine twice a week for seven weeks. The trials will be conducted alongside gastroenterologist Dr. James Daveson, who called the vaccine “a very exciting potential new therapy that has been undergoing clinical trials for several years now.”
    Dr. Daveson said the investigational vaccine might potentially restore gluten tolerance to people with celiac disease.The trial is open to adults between the ages of 18 and 70 who have clinically diagnosed celiac disease, and have followed a strict gluten-free diet for at least 12 months. Anyone interested in participating can go to www.joinourtrials.com.
    Read more at the website for Australia’s University of the Sunshine Coast Clinical Trials Centre.

    Source:
    FoodProcessing.com.au

    Jefferson Adams
    Celiac.com 06/19/2018 - Could baking soda help reduce the inflammation and damage caused by autoimmune diseases like rheumatoid arthritis, and celiac disease? Scientists at the Medical College of Georgia at Augusta University say that a daily dose of baking soda may in fact help reduce inflammation and damage caused by autoimmune diseases like rheumatoid arthritis, and celiac disease.
    Those scientists recently gathered some of the first evidence to show that cheap, over-the-counter antacids can prompt the spleen to promote an anti-inflammatory environment that could be helpful in combating inflammatory disease.
    A type of cell called mesothelial cells line our body cavities, like the digestive tract. They have little fingers, called microvilli, that sense the environment, and warn the organs they cover that there is an invader and an immune response is needed.
    The team’s data shows that when rats or healthy people drink a solution of baking soda, the stomach makes more acid, which causes mesothelial cells on the outside of the spleen to tell the spleen to go easy on the immune response.  "It's most likely a hamburger not a bacterial infection," is basically the message, says Dr. Paul O'Connor, renal physiologist in the MCG Department of Physiology at Augusta University and the study's corresponding author.
    That message, which is transmitted with help from a chemical messenger called acetylcholine, seems to encourage the gut to shift against inflammation, say the scientists.
    In patients who drank water with baking soda for two weeks, immune cells called macrophages, shifted from primarily those that promote inflammation, called M1, to those that reduce it, called M2. "The shift from inflammatory to an anti-inflammatory profile is happening everywhere," O'Connor says. "We saw it in the kidneys, we saw it in the spleen, now we see it in the peripheral blood."
    O'Connor hopes drinking baking soda can one day produce similar results for people with autoimmune disease. "You are not really turning anything off or on, you are just pushing it toward one side by giving an anti-inflammatory stimulus," he says, in this case, away from harmful inflammation. "It's potentially a really safe way to treat inflammatory disease."
    The research was funded by the National Institutes of Health.
    Read more at: Sciencedaily.com