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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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    Your article described me and my twin sister perfectly , so much that it has given us hope. I just found out that I have celiac disease due to some major problems this past year. So she and I have been researching the symptoms, Now I am convinced that she does also. she has always had severe problems with her bowels since we were children more so than me. Today she is malnourished, anemic with thyroid problems. She is terribly underweight and her stomach is bloated daily with constipation. But the most interesting thing in your article was the severe bone pain. She has had 4 surgeries to correct her neck shoulder and elbow but it seems like nothing helps. She is and has been in extreme bone and nerve pain everyday now for about 3 years now. Please let us know if being gluten free helped relieve the bone pain and if so how long did it take?

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    I am so sorry that you are having to deal with desire of bagels. I too, loved bread. I loved homemade bread, hot from the oven and butter waiting. It was a passion. My daughter and my granddaughter have Celiac as well. My granddaughter (age 9) remembers just how yummy pizza was, but she knows that she does not want the belly pain. Thank you for sharing. Barbara

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    I identify completely with your frustration that gluten is hidden everywhere. I miss being able to eat anywhere and to eat everything. I hate being a 'pain in the neck' every time I enter a restaurant, and since I've never really learned to cook, I hate being forced to eat my own cooking just to be safe! We lose the ability to be spontaneous -- everything has to be planned in advance. I, too, long for the day when all restaurants and markets offer safe selections for us!!

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    I understand how frustrating the lack of awareness by the medical profession can be and how difficult doing without a favorite food is, especially when it involves either family traditions or childhood memories. My Sunday mornings were given back to me by a gluten-free backing company. The bagels I remembered are the bagels they sell. You can't tell the difference between them and the wheat bagels except you don't have to go out to get them on Sunday morning.You just put them in the oven I hope you can satisfy your own bagel dreams again.

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    31 years of incorrect diagnoses (IBS, colitis, etc.) and then a fine doctor ordered an endoscopy when I demonstrated some anemia at a blood drive. Voila`. Celiac. My angel wife immediately bought a Gluten-Free cookbook and I have never been deprived of any of the joys of fine cuisine. Her English Muffins would make old man Thomas blush with shame. BTW, maltodextrin, if made in this country, is Gluten-Free according to the FDA.

    Good luck! It doesn't have to be a problem anymore!

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    I have severe pain in my bones and muscle when I eat gluten. I do better when I do NOT eat gluten. I have a lot of problems now that won't go away. If at all possible you need to get off of gluten to stop the problems before it is too late. I suffered a long time. Even seizures. I was told I was faking them and sent to a psychiatric ward twice to see what was wrong with me. I wasn't treated well in any hospital I lived in. I missed a lot of holidays and birthdays. You have to stop it before it gets too late. It is a nightmare to live. If one doctor won't help you, go to another.

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    While I don't suffer from celiac disease, I am highly allergic to gluten, potentially fatal. I feel for you about eating out, reading the ingredients on whatever you buy to eat, and especially, the ignorance of people. People who tell you that you are so strong not to eat whatever. I don't have a choice, my life is a stake. Just yesterday I stood in a shop looking at all the pies, rolls, tarts, etc, thinking that I would never eat that again in my life. However, time has taught me to be grateful that I can lead a normal life, I can walk, I can see, I can work. Eating becomes of secondary importance, as long as I am healthy and alive. Good luck to you - I hope you stay healthy and pain-free.

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    Guest Laura Hatfield

    Posted

    A very well written, if negative article. I understand it comes from your heart and I do know how difficult the whole lifestyle change thing is. (I shed a husband who was NOT helpful) however, you do not speak of the absolute relief that being Gluten-Free brings (you may not have been Gluten-Free long enough to experience it). It is hard for me as a single woman, but I find that the people I meet who are truly caring folk step up to the plate (pun intended) for me. So in a way it is a great litmus test to see who your true friends are!

    Best of luck to all of us as we move forward...the good news is that even main stream grocery stores are marketing Gluten-Free foods...so hope is just around the corner :-)

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    Hi,

    There is a product out there called 'Glutagenics' by a company, Metagenics. It contains glutamine, licorice root, and aloe and aids in restoring the intestinal lining which would hopefully minimize those bleeds you write about. I have wasted hundreds of dollars on useless supplements, but this stuff truly helps improve absorption and overall health on the gluten free diet. You can Google it, or get it through a local chiropractic physician (they may only sell to health care providers). I get mine from my chiropractor.

    I hope this helps,

    Jennifer

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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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