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  • Janet Doggett
    Janet Doggett

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

    Reviewed and edited by a celiac disease expert.

    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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    I agree with you! Thank you for sharing your thoughts and pain. I discovered my gluten intolerance after a relative was diagnosed. I read up on everything and noticed my symptoms were the same. One noticeable symptom was pain, mostly joint pain every single day. My doctor said I probably had arthritis. Only in my 50's, I was feeling old and tired. After going on the gluten-free diet, my joint pain stopped after only about 2 weeks. Fabulous! I hope it is the same time frame for you. With respect to the bagels, I was dying for that taste again, too. After a year of longing for bagels and that wonderful 'crunch', I discovered it in the frozen section of a store. They're frozen whole, but just defrost one in the microwave about 30 seconds, cut it in half, and toast the two parts in your clean toaster for a couple of minutes. Top with the cream cheese and jelly -- yum! Just like before! You shouldn't have any trouble finding them!

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    I can identify with this. I couldn't find a doctor who would test me. I was sent to a psychologist, diagnosed with anorexia, tested for gall bladder problems, tested for fertility, diagnosed with IBS, treated for psoriasis, taken allergy shots every day for 2 years and still kept loosing weight. My husband put me on a liquid diet for a week and then started adding one thing at a time. When we got to anything with wheat/gluten I got real sick again. When I told my physician he told me I didn't need any test and to just not eat wheat. I learned how to make a good bread that is like an English muffin. Getting groceries takes longer since you have to read the whole package. Eating out is very limited. It is real hard to make people understand. It's kind of like trying to feed a diabetic candy. A diabetic would get sick and possibly die. It may take longer for us but the same goes and some people need to treat it more seriously. 'Get over it' isn't what any of us really want to hear. Thank you for your article.

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    I was lucky to be diagnosed not too long after the onset of symptoms, thanks to a nurse who recognized the symptoms. The first few months I think I lived on rice cakes and peanut butter, but gradually learned to shop carefully and through the internet found many companies that produced foods without gluten.

     

    I'm glad you finally were diagnosed and now can enjoy life without the risks, but I must take issue with one statement at the end of your story. You don't like it when your friends 'devour the bread basket in front of you.' I used to love bread, and I miss the good breads with that marvelous texture, but it doesn't bother me at all when my dining companions enjoy the bread basket. I know the pain and other issues that follow if I were to taste the bread, and that's enough to make me stay away from it. I love smelling fresh bread, and I love that my friends enjoy dining out with me even though I have dietary restrictions. I find that going to any nice restaurant at an off hour allows me the chance to talk to the manager and the chef and they are happy to prepare foods that are safe for me. I guess I must be one of those 'upbeat' celiacs who feels that now that I know what I'm dealing with, I can deal with it, and move on to the best part of life.

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    You have said everything I have wanted to shout from the rooftops!!! Fortunately I had a nurse friend who diagnosed my symptoms. After ten years of the physician medical maze, and many, many, many debilitating years of my life!!! How do we get the word out sooner?

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    I think Diane's comment is a little harsh. Of course, it's not cancer but as someone who has celiac and not cancer either it's comforting to realize you're not alone. This is celiac.com not cancer.com. The pain and discomfort is real to her and she's simply expressing herself for the benefit of others. To belittle someone because they're not suffering worse is not fair. I can only assume you have neither celiac nor cancer. I hope you don't.

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    I too think Diane's comment is a little harsh. I have cancer and have recently been diagnosed with celiac disease. As part of my treatment for cancer I underwent multiple surgeries, 12 months of chemotherapy, 6 weeks of radiation therapy, followed by another 12 months of chemotherapy. While you can't compare the two diseases (cancer - celiac) treatment for cancer doesn't give you a choice what you get to pass through your digestive system...it all gets vomited up...with celiac disease you just have to have the willpower of steel to stick to the gluten free diet. I have always loved home baked breads, biscuits, scones, muffins etc and I too am dreaming of bagels!!!

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    Are you sure you "had no vitamin D in your blood"? Finding a better way to state that you had severe Vitamin D deficiency would be more effective. Similarly, I'd like to see clearer information on your hysterectomy. If you're providing medical information, specificity matters.

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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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