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  • Janet Doggett
    Janet Doggett

    I Dream of Bagels: A Personal Narrative about Being Diagnosed with Celiac Disease


    This article appeared in the Winter 2008 edition of Celiac.com's Scott-Free Newsletter.

    Celiac.com 07/19/2008 - When I was 6 years old, I lived in Dallas, Texas, and I had a best friend named Judy. It was at her house that I first ate a bagel. I fell in love with its chewy, crusty texture. I didn’t know much at that age, but I knew that I loved eating those bagels – I couldn’t get enough.

    I also knew, from a very young age, that something was wrong with me. Something that they would one day discover and name after me. I had stomachaches all the time. I can’t remember a time when my stomach didn’t hurt at least a little bit.

    “You were so healthy when you were young,” my mother is fond of saying. Painfully shy and uncomplaining–yes. Healthy, no. We were just blissfully unaware of what lay in wait for future doctors to discover.

    In high school, I was anemic, and experienced several bouts of tachycardia that were written off to anxiety. And then after I was married, I twice struggled with infertility. Later, the “stomachaches” returned and worsened and doctors removed my gallbladder thinking that stones were to blame and then my uterus thinking it might be hormones causing my symptoms.

    Along the way, in trying to diagnose me, doctors discovered insulin-dependent diabetes, low thyroid and high cholesterol. I also have bipolar disorder. I take a combination of 13 medications a day for my health maintenance, and I’ve been to the hospital at least 18 times in the past year. But still, I felt that they hadn’t hit upon that one thing that was really wrong, that was causing my stomach to hurt so badly.

    Then, two years ago, I had added “severe bone pain” to my ever-growing list of symptoms and went to see a rheumatologist. He refused to believe it was a simple case of arthritis and tested me for malnutrition. I had no Vitamin D in my blood – a tell tale sign that something was wrong with my gut. Next came the antibody test and then a biopsy that proved that the tiny villi that lined my intestines were indeed “flattened.” We had a diagnosis after only 10 years of actively seeking one. I had celiac disease, an auto-immune disease where you can’t digest wheat or gluten, the wheat protein.

     “What? I can’t eat bread? I can’t have bagels?”

    I was sure I would starve to death when I heard that this removal of all glutens from the diet was the only treatment for the disease whereby the lining of a person’s intestines is badly damaged. If left untreated, it can lead to things like malnutrition, brain ataxia, osteopenia, and eventually a cancer called lymphoma.

    More specifically, what was happening was the lining of my intestines was shriveling, shrinking in reaction to the gluten in the bread or other products made with wheat. The damaged intestines repair themselves with the removal of gluten from the diet, but it must be strictly adhered to for life. Even the smallest taste of wheat or gluten would immediately return my villi that line the intestines to a flattened mass. 

    At first I was afraid to eat anything. All day long, gluten loomed at me from dark corners. At night I dreamt of bagels and pizza.

    The problem is that gluten is hidden in many foods. Obviously it is in bread, bagels, pizza, pasta, most fried foods (all wheat flour-based products) but it also is in many processed foods like canned soups and salad dressings, ice creams, foods made with caramel color, malt, barley, rye, HVP, spelt, and the list goes on. It also means that I must use separate utensils to butter my gluten-free bread, separate pots and pans to cook my food and separate colanders to drain my corn or rice-based pastas. Even certain toothpastes and lipsticks are suspect.

    To have celiac disease means that you no longer can rely on that convenience factor of ordering take-out or eating fast-food. It means that you have to be prepared each and every time you eat, bringing with you sauces and dressings, buns and breads.

    You learn, too, that part of the reason bread is bread is because of the gluten. It is what holds it together and gives it its chewy texture. Breads made from rice and corn and the like are mealy and fall apart. They must be kept frozen and then toasted, and even then are just not the same.

    Eating out is risky. You must carefully research a restaurant before you go, finding out if they offer any gluten-free foods and usually speaking to the manager and the chef. I usually go to one of two restaurants that I know to have gluten-free menus. Even then you risk cross-contamination or accidents. The other day, I found a crouton in the bottom of my salad bowl. This can be disastrous to a person with celiac disease.

    It signaled all things dark and dastardly, and sure enough, later that night, it started: a gnawing, a clawing from the inside out. Something akin to severe hunger but more raw than that. Then it settled in the pit of my stomach and churned into a piece of broken glass. A reaction to gluten can feel as though every time you move you’re stabbed by a shard of glass until you’re bleeding from the inside out. This can result in severe projectile vomiting and other gastrointestinal symptoms that are mostly unmentionable.

    The Other Celiacs
    There are those people who have celiac who are really upbeat about it all – perky even. There are also celiac patients who have mild or no symptoms of the disease. I’m not one of them. They will tell you that we are among the lucky ones, the ones who know they have the illness, the ones who have been diagnosed and now have all this healthy good-for-you food at our disposal. They laud the nature of the illness whereby the only treatment is dietary and does not require surgery or other invasive means. But if you ask me, I would much rather have one surgical procedure that would “cure” me and be able to digest wheat the rest of my life than to have to make such a lifestyle overhaul. To have celiac is to be socially awkward at best and to be in constant pain at worst. It is not something one wishes to have.

    The worst part is no one (other than another celiac sufferer) understands, from the family member who wants you to try “just one bite” of her homemade streusel to the restaurateur who mistakes white flour for a non-gluten product because it has been “bleached” to the medical professional who thinks it’s a simple allergy rather than an auto-immune disease. The lack of awareness of celiac is astounding given that nearly two million Americans are said to suffer from it.   The problem is it is widely under-diagnosed. One in 133 Americans are said to have celiac disease but only one in 2000 knows they have it.

    Lack of Awareness
    When we are little kids, we are taught that doctors are there to help us. I have very few doctors who actually help me. I had one doctor -- an endocrinologist – say that they would figure it all out at the autopsy. To have a chronic illness is to realize that there is no cure. You will not be cured. You will learn to live with some amount of pain and illness.

    This lack of awareness of the disease and its effects even among medical professionals is unnerving. I’ve shown up at hospitals vomiting blood, writhing in pain with blood pressure so low I should be crawling yet I’ve been told nothing was wrong with me, that all of my blood work was “perfectly normal” and therefore I should just go home and rest.

    Of course if they had checked my gluten antibodies, they would have found that they were twice as high as was normal, pointing to an accidental ingestion of gluten, which sent my body into a tailspin of auto-immune hell. Yet there is no “auto-immunologist” to which I can turn for help.

    What’s even more frustrating is that celiac disease is not a rare illness – it is estimated that it could even affect three million Americans!

    Lessons Learned
    I dream of bagels that I can digest that taste good. I dream of hospitals where treatment comes without scrutiny and care comes with respect.

     And I dream of a place I can go and be welcomed where “everybody knows the name” of celiac sprue. A place where people understand that it is not a simple thing to just“eliminate gluten” from one’s diet as gluten – the wheat protein – isin many, many foods, some obvious, yes, but many hidden, too.

    In the meantime, I’m learning to eat to live and not the other way around. And I’m enjoying the simple things in life – the friends who will drive far enough to find a gluten-free restaurant; the same friends who won’t devour the bread basket in front of you!


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    Guest Barbara Vivian

    Posted

    Another celiac who lives your life! I was diagnosed with celiac about 3 years ago at age 43. I had no symptoms. A yearly physical showed a zero level of iron and my nurse practitioner (not doctor) put me on iron pills. When the levels did not change she sent me to a hematologist. They suspected lupus or celiac. I had never heard of celiac and didn't think much of it. I sat once a week in an oncology unit getting iron transfusions for two months. After an endoscopy, biopsy, etc., I was diagnosed. I did not adjust well to this new diet and my doctor's reply was 'I guess you will have to change your diet'. I considered him a moron. This diet changes your life. It effects your family, friends and your everyday existence. I probably would have been grateful for this diagnosis if I had severe pain, diarrhea, constipation, vomiting, etc., but I had nothing. I wasn't sick. It has been three years and I hate this diet just as much today than I did when I got it. I don't like the constant explanation when I go out to eat. I hate that it dictates where I go to eat with my friends. That I have to continue cooking for my family the things that I would love to eat. Let's face it, not having a bagel, a bowl of Honey Bunches of Oats w/Almonds, pancakes, or an English muffin for breakfast sucks. Having your family cook a turkey with no stuffing inside and having them all suffer because you can't have it sucks. Not having the chocolate cream pie after, none of this is good. Yes I am grateful I do not have cancer, that I am not blind, etc., but boy I sure do feel ripped off. Luckily my children have not tested positive for this disease that literally came out of nowhere. I only hope it does not pass on beyond me. All of this negativity and hatred from me, and I am medicated. Some days are better than others. Hopefully, someday soon, all canned and boxed products that are gluten free will be listed with a readable label stating the same. I hope some day I come to peace with this thing, but it ain't today!

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    Guest Dr. Eydi Bauer

    Posted

    You are not alone! I am a doctor with celiac disease (diagnosed 4 years ago) and I am dedicating my practice to uncovering the other 2.8 million sadly misdiagnosed celiacs.

    I enjoyed your article, you write well. I am about to publish my first book on the subject of gluten intolerance. The awareness is growing and you will be healthier from here on in.

    Dr. Eydi Bauer

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    I was diagnosed with celiac 2-1/2 years ago after years of severe anemia. I did not have any other symptoms--no stomach aches, etc. I loved whole wheat products. I received my diagnosis, cried all the way home and went cold turkey on a gluten free diet three days later. It was right before my birthday, thanksgiving and Christmas. I gained 15 lbs. in the next few months because my homemade fudge was gluten-free....while all the other holiday goodies were not. I now have a row of gluten free cookbooks. No one eating dinner at my house would suspect a problem. My daughter prefers my gluten-free pizza to the one I have always made. I make ciabatta buns to take on trips for sandwiches and burgers. Life goes on!

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    Very interesting article and I sympathize completely. I was diagnosed with 'gluten intolerance' over 30 years ago after growing up with 'stomach aches', or as my mother's diary's state 'E is sick with that mysterious illness again'! Included wth the stomach aches was severe joint (knees) pain. As I got older most doctors suggested that I visit a 'head doctor' since there was nothing wrong with me. It took a teaching doctor in Albuquerque to diagnose my situation, and I immediately removed all known gluten from my diet and wonder of wonders, started getting better immediately. (Of course, for the first year I was afraid to fix anything, since then I have gotten very creative with foods!) All of that to say, there is light at the end of the tunnel.

    It has just been in the last 5 to 10 years when there has been gluten free products on the market that are edible. Interesting, while traveling in South America and Europe over the last 20 years, it has been easier to eat gluten free there than in the US!

    One thing for me is that I cannot go into bakeries, and I studiously avoid the bread and bakery area in grocery stores, also I avoid the high baking times in grocery stores, all of this to avoid the symptoms of celiac. I have discovered that eventually the desire for wheat products disappears, but it isn't easy.

    Hang in there, living 'gluten free' does get easier with time. We eat out, eat with friends, I always carry 'emergency rations' wherever I go and friends are very understanding, most consider cooking 'gluten free' a fun challenge!

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    Thanks to everyone who has written me and posted here! There have been so many responses I can't even answer them all. I have been humbled by all who have written, by all who struggle with celiac and gluten intolerance. I no longer feel alone! I also have recently moved more toward acceptance of my illness... please keep writing!

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    Guest Marilyn Brookes

    Posted

    It disturbs me that you sound so depressed. Finding out I am celiac and what to do about it has given me a whole new lease on life. I don't hurt, I can stray more than a few feet from the bathroom, I have more energy than in years... I could go on and on about how good I feel.

     

    The funny part is that I am a real foodie. Eating is my hobby. So how do I handle it? At home is no problem. I can make most of the things my family & I enjoy without gluten. Eating out is a bit difficult, but I have found, with very few exceptions, restaurants will really strive not to make you sick. (Can you say lawyer?) So, I go anywhere, within reason, and eat well.

     

    Try to look at the bright side. Maybe your bipolar medication needs adjusting.

     

    I hope you will find a way to be happier.

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    My experience was different; but I have learned so much from your writing about your difficulties before your diagnosis. People should also be vigilant for how teeth are affected as in my case I had calcium resorption, wherein two teeth were removed even though I was checked twice a year. It occurs below the gum line and is out of sight.

    The cook book series by Betty Hagman has been valued and helped me to learn to adapt my own recipes.

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    I read your article and while it was very well written, I felt that it is time for you to stop complaining. I was diagnosed 4 years ago and miss many of my favorites. However, after spending ten sessions in a chemo lab getting iron infusions (due to almost no iron in my system from undiagnosed Celiac) I looked around at people getting chemo and felt that I had little to complain about. Stop moaning and realize that your glass if half full!!!

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    I am a nurse, and was diagnosed 3 months ago. Despite my medical training, I knew very little about Celiac Disease, and have been busy learning ever since!

     

    I have been dreaming of biscuits (cookies) and sandwiches, and refusing them in my dreams! I never dreamed about them before I couldn't have them....

     

    I guess it's a learning journey, and I get frustrated and annoyed at my lack of choice, but hope that in time it will become a natural thing. I hope when my energy returns 100% and my anemia is corrected it will all be worth it. Keep speaking out and lets' change the way labeling in the US and UK is done!

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    I agree with your testimony in living with celiac disease.

     

    I suffer with Dermititis Herpetiformis and I must have gotten some cross contamination in a Wendy's baked potato that I ate last week. (Sorry, Wendy's)

    I loved eating your food before my diagnosis. I have eaten baked potatoes before this week and did not suffer this reaction. I am sad knowing that now I am without anywhere that I can safely stop and eat if I am on the go.

     

    Today, I am laying here in my bed with ice on my neck trying to rid myself of yet another migraine headache that ruins my entire day whenever I ingest gluten.

     

    No, it's not cancer as one of the comments was clear to say. I thank God for that, but saying that to a person with celiac disease is very insensitive and rather cruel, your comparison is trying to diminish the pain and suffering that we have endured and this is certainly not fair.

     

    If you are celiac sufferer yourself, I can hardly believe that you would say something like that to a fellow sufferer of the disease.

     

    Saying something callous like this to someone who has a disease of any kind, no matter what it is, makes you seem very cruel and indifferent.

     

    If you think that we are dramatic, try living with this illness for 12 years, undiagnosed, like I did, when I finally found out what I have, I was overjoyed to know the source of my affliction.

     

    It may sound crazy to someone who has never gone through this kind of misery, but I feel liberated now that I know. I have a diagnosis and I can finally help myself to feel normal and well again.

     

    I have good days and bad days, but I am grateful to God for giving me a way, through diet and perseverance to combat a rare skin disease and over all a very difficult medical condition to deal with. I have other health issues from this condition as well as this which complicates things

     

    Dear Celiac Brothers and Sisters,

     

    You are in my thoughts and prayers, stay strong and let God help you to have peace and joy even when you are having it tough.

     

    May God Bless you!

     

    Kathleen

     

     

    So please if you are out there thinking that celiacs are just cry babies who complain too much, try walking in our shoes for a few days, let alone 11 years begging God to please show me what is wrong....

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  • About Me

    I'm a writing professor at a small Christian New England college. I was diagnosed two years ago with Celiac disease but suspect I have had it for a number of years -- even as a youth. I have battled with bone pain, stomach pain, digestive disorders, infertility, rashes, and other ailments for years. Finally, my rheumatologist dx the celiac after finding that I had no Vitamin D in my blood. I hope to share my writing on this blog and help others with Celiac.

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