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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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    After years of tears and painful adapting, the celiac disease in our family has become a blessing. My three daughters have it, along with my husband and perhaps myself. My daughter and I suffered from terrible bone pain for years, and we discovered it was not the celiac (although it may be the original cause), but a corn allergy (my daughter) and corn intolerance (myself). Already one daughter has a severe dairy allergy. On top of celiac, these realizations were devastating.... However, we have come to embrace our gift. For it is a gift. I was suffering from depression and bipolar tendencies (never diagnosed), and saw my children following suit. But with our change in diet, now that we are free of gluten and even corn, we are rejoicing everyday with health and real Happiness. The kitchen is an outlet for our creativity, and although we must say no to so much our society indulges in, we are very glad of it now. We are more than content. We feel free and at peace. We are more busy than many, but we are so rewarded. We would not go back to our old lifestyle for anything... even if it didn't include the results of celiac! It is good and right to grieve the losses and face the pain, but coming to acceptance is the goal. This lifestyle is more wonderful than I could have ever imagined. Pizza and bagels are a small exchange for what we've discovered in the world of eating well. God has been sweet to us as we've submitted to His strange plans.

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    I can relate! I am one of the 'silent' celiacs who doesn't have the classic symptoms. For one thing, I'm overweight - and couldn't lose for anything! I also have had severe trouble with anemia, bone and nerve pain, thyroid disease, infertility, and low blood pressure. (Not so silent after all, huh?) But because I didn't fit the image of an underweight celiac patient, I wasn't diagnosed until age 35. After living Gluten-Free for two months, I've lost 15 lbs. The lumps on the back of my neck (swollen lymph nodes) are gone. My bone pain has disappeared. My anemia is tons better - I've gone from needing transfusions to actually giving blood!

     

    Thanks for writing an informative article that raises awareness, and thanks for sharing your story. It is nice to know that I'm not the only one out there.

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    Guest valerie behrens

    Posted

    I related to your article and found it very interesting that we celiacs have so many problems with our health care providers, when is the medical community going to start learning about the symptoms of celiac? It took me 4 very long painful years before I was diagnosed.

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    Excellent article! I was ill for quite awhile before finding out that I had celiac disease. This disease was bad enough for me, as I loved making homemade breads for my family, friends and co-workers, but I found out I am also allergic to eggs, milk and a few other foods. The first time I went to the grocery store after finding out about my allergies was a nightmare and very depressing.

    I can relate to your experience of the medical profession and the lack of awareness of this disease. I too, along with I'm sure many others, have experienced this also unfortunately. It felt like I was on that show 'Mystery Diagnosis' on Discovery Health Channel. What a horrible feeling it is. One no one should ever experience.

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    Great article !! Good to hear the truth about this tricky disease. Also I feel less 'lonely' hearing other patient's experiences. Sometimes, I am quite upbeat, too and then, I can become a bit despondent. I feel a social group like people online , here, is very very helpful and psychologically healthy. I'm 60 yrs old and diagnosed 6 years ago, after tackling it seriously for about 6 years. Best of luck to everyone and thanks for sharing !

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    Thanks for sharing your story. Like you, I've suffered from poor digestion and stomach discomfort most of my life. In my adult life I've also suffered from osteoarthritis and loose bowels. I'm now in mid-50's, chronically underweight, with low blood pressure and constant fatigue. But I've been experimenting with diet for 11 months and I've found that by avoiding wheat, barley/malt, rye, oats, soy and corn I can maintain better digestion, virtually eliminate arthritic pain and bowel problems, and marginally improve my energy levels. I now eat lots of buckwheat, rice and millet products, plus meat, fish, eggs, veges and fruit. My health is gradually improving and I'm positive about the future. Good luck to all who're struggling against Nature's little imperfections!

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    I hear you. I'm struggling with keeping myself and my 5 year old on a gluten free diet. It's not easy. I had to talk him out of a pretzel the other day. He wanted it so badly, but I reminded him of how bad it would make him feel if he ate it. I really felt bad for him. Eventually and reluctantly, he gave up the pretzel and settled for some gluten free raisin bread.

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    What the author went through before being diagnosed was typical of many celiacs. I was almost 60 and was fortunate to have the first 'red flag' from the Red Cross when I became persistently anemic. Then, in spite of taking calcium supplements for over 20 years, showed signs of osteopenia. Fortunately my new GP had a wife with celiac disease and started the testing process. And yes, my mother remembered me as a healthy kid - one with aches and pains from infancy on.

    Anyway I'd rather live with my celiac restrictions than have any of the diseases I might get from ignoring it!

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    Reading this I could see my daughter--she has celiac and we just recently found out after 4 years she was very low on vitamin D. Her thyroid doctor put her on vitamin D for 6 weeks now she said she feels a lot better with the joint pains her GI doctor never tested her for this. she gets low on potassium and a lot dehydrated even though she probably drinks 20 bottles of water a day all she drinks now. she found a gluten free bagel that she warms in the microwave and eats it for breakfast or uses it as a sandwich bread. She loves them. good luck with your progress in the future.

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    Wow, your article was really good. I know what you're going through when it comes to having to eat gluten-free. It is a real challenge, and it feels like the rewarding non-sick moments don't come as often as you'd like them to.

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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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