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      Frequently Asked Questions About Celiac Disease   04/07/2018

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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    DIAGNOSED WITH CELIAC DISEASE? HOW LUCKY YOU ARE! BY DANNA KORN


    Danna Korn

    This article originally appeared in the Summer 2004 edition of Celiac.com's Journal of Gluten-Sensitivity.


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    Celiac.com 06/08/2010 - At first, a diagnosis of celiac disease can be daunting, to say the least, and for some people, even devastating.  It means giving up some of your favorite foods—pastas, breads, pizzas, cakes, cookies, and pretzels—at least as you used to know them.  So why should you consider yourself lucky if you’ve been diagnosed with celiac disease?  Because you’ve been given the key to better health.

    Okay, so I’ve never been good at saving the punch line for the end.  It’s true, though, you DO have the key to better health: A gluten-free diet.

    Still not feeling like you just won the lottery?  Well, consider this: Celiac disease is the most common genetic disease of humankind—yet for every person diagnosed with celiac disease, 140 go undiagnosed.  They may still suffer from gastrointestinal distress, headaches, depression, joint pain, or other symptoms.  Many are told they have “irritable bowel syndrome,” fibromyalgia, or chronic fatigue syndrome—and that there’s nothing that can be done for them.  “Go forth and live your life in misery,” is, in essence, their lifetime sentence.  You, however, know that simply a dietary modification (no, I didn’t say a “simple dietary modification,” and you’re probably acutely aware of the difference) is the key to better health.

    The gluten-free diet is a medical necessity for our family, but it is also a healthy way of life.  Sometimes I used to think, “If only I could not have to worry about making tonight’s meal gluten-free, I’d make…” What?  What would I make?!?  Would I make macaroni and cheese from 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 there’s a healthy meal (well okay, every now and then maybe!).

    People often tell me they find the cost of the gluten-free diet to be prohibitive.  True, the cost of a loaf of gluten-free bread could buy you an entire meal in some restaurants…but think of this: What if your condition required prescription medication?  The cost of even some of the cheapest medications could buy (at least) a loaf of gluten-free bread each day.

    We are fortunate to live in a time when celiac awareness is at an all-time high.  Gluten-free foods are delicious and readily available (even the “PollyDanna” in me couldn’t have said that with so much conviction 13 years ago when we first began this lifestyle!).  These days, customer service reps on the other end of the toll-free lines at food companies actually know what we’re talking about when we ask if their products are gluten-free.  Excellent cookbooks and resource books abound, as do support groups and seminars. 

    Yes, if you’ve been diagnosed with celiac disease, you can consider yourself lucky for a number of reasons.  If you’ve read my books or heard me speak, you know my mantra, so sing it with me now:  “Deal with it…don’t dwell on it!”  Before long, you too will realize how very lucky you are.


    Image Caption: Diagnosed with Celiac Disease?
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    Guest Sara Gird

    Posted

    Wow....I have been saying this to anyone who would listen for many years now. Was diagnosed 13 years ago when no one even knew what Celiac was. How much healthier can a diet be than fresh vegetables and meats and fish without all that processed stuff that everyone else eats. Glad to hear it from someone else!!!

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    Guest Yafa Greenzweig

    Posted

    When people ask me what the secret is to my healthy figure and perfect BMI, at almost 48-years-old, I no longer think of my mandatory gluten-free diet as a curse. It is a blessing!

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    Guest Kay Idol

    Posted

    A very encouraging article for those of us who have celiac disease. I have yet to think of it as a blessing.

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    Guest LReburn

    Posted

    A wonderful positive outlook on a less than wonderful diagnosis. You have given me a new vision for a life long issue with wheat gluten, and for me corn too. I have lost twenty five pounds since eliminating wheat and corn from my diet. I am more clear headed and feel healthier. Thank you!

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    Guest Becky

    Posted

    Fabulous article...I have been saying this to many people for many years. I have been a diagnosed celiac since I was 18 months old and I am now 38. I live in Kenya and every time I meet a new group of people they ask me how I cope without eating gluten and wheat-based products. I tell them I look at it as a way: to keep me trim and fit because I do not have access to all that bread and all those sweet snacks that are so easy to eat if you are not gluten free. Give me a bowl of fruit or a plate full of broccoli any day!

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    Fabulous article...I have been saying this to many people for many years. I have been a diagnosed celiac since I was 18 months old and I am now 38. I live in Kenya and every time I meet a new group of people they ask me how I cope without eating gluten and wheat-based products. I tell them I look at it as a way: to keep me trim and fit because I do not have access to all that bread and all those sweet snacks that are so easy to eat if you are not gluten free. Give me a bowl of fruit or a plate full of broccoli any day!

    I too live in Kenya, Becky, and would like to know how and where you were diagnosed because I suspect my husband has coeliac disease.

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    Guest WildEdibles

    Posted

    I haven't been diagnosed but I had a hint that I was having issues with wheat. I switched my diet took out all wheat, oats and barley and am using less sugar when I make things by scratch.

    I feel so much better my belly doesn't hurt anymore even my woman time has less pain.

    But the energy level of improvement WOW!!

    I lost way too much weight but now that I have found buckwheat I am starting to put some weight back on I can make nice breads and deserts still cutting the sugar in recipes having issues with blood sugar levels too low usually but things are starting to balance out. Thanks for all the information. I think my 2 kids have issues too with sugar and wheat but they love my new baking so a switch for them might make them feel better as well...thanks again!

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    I too live in Kenya, Becky, and would like to know how and where you were diagnosed because I suspect my husband has coeliac disease.

    My father lives in Kenya and a physician there suggested he may have celiac disease. Does anyone happen to know if blood tests are available in Kenya?

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    I too live in Kenya, Becky, and would like to know how and where you were diagnosed because I suspect my husband has coeliac disease.

    Hi, I am a Kenyan and I think that my brother who is 31, and has been sick all his life but has being treated for acute eczema has problems with gluten. Do you know of a doctor in Nairobi where we can take him for blood test? Please help.

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    Hi, I am a Kenyan and I think that my brother who is 31, and has been sick all his life but has being treated for acute eczema has problems with gluten. Do you know of a doctor in Nairobi where we can take him for blood test? Please help.

    Be sure to join our forum to get help: www.celiac.com/gluten-free/

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    admin
    WHAT IS CELIAC DISEASE?
    Celiac disease is an autoimmune condition that affects around 1% of the population. People with celiac disease suffer an autoimmune reaction when they consume wheat, rye or barley. The immune reaction is triggered by certain proteins in the wheat, rye, or barley, and, left untreated, causes damage to the small, finger-like structures, called villi, that line the gut. The damage occurs as shortening and villous flattening in the lamina propria and crypt regions of the intestines. The damage to these villi then leads to numerous other issues that commonly plague people with untreated celiac disease, including poor nutritional uptake, fatigue, and myriad other problems.
    Celiac disease mostly affects people of Northern European descent, but recent studies show that it also affects large numbers of people in Italy, China, Iran, India, and numerous other places thought to have few or no cases.
    Celiac disease is most often uncovered because people experience symptoms that lead them to get tests for antibodies to gluten. If these tests are positive, then the people usually get biopsy confirmation of their celiac disease. Once they adopt a gluten-free diet, they usually see gut healing, and major improvements in their symptoms. 
    CLASSIC CELIAC DISEASE SYMPTOMS
    Symptoms of celiac disease can range from the classic features, such as diarrhea, upset stomach, bloating, gas, weight loss, and malnutrition, among others.
    LESS OBVIOUS SYMPTOMS
    Celiac disease can often less obvious symptoms, such fatigue, vitamin and nutrient deficiencies, anemia, to name a few. Often, these symptoms are regarded as less obvious because they are not gastrointestinal in nature. You got that right, it is not uncommon for people with celiac disease to have few or no gastrointestinal symptoms. That makes spotting and connecting these seemingly unrelated and unclear celiac symptoms so important.
    NO SYMPTOMS
    Currently, most people diagnosed with celiac disease do not show symptoms, but are diagnosed on the basis of referral for elevated risk factors. 

    CELIAC DISEASE VS. GLUTEN INTOLERANCE
    Gluten intolerance is a generic term for people who have some sort of sensitivity to gluten. These people may or may not have celiac disease. Researchers generally agree that there is a condition called non-celiac gluten sensitivity. That term has largely replaced the term gluten-intolerance. What’s the difference between celiac disease and non-celiac gluten-sensitivity? 
    CELIAC DISEASE VS. NON-CELIAC GLUTEN SENSITIVITY (NCGS)
    Gluten triggers symptoms and immune reactions in people with celiac disease. Gluten can also trigger symptoms in some people with NCGS, but the similarities largely end there.

    There are four main differences between celiac disease and non-celiac gluten sensitivity:
    No Hereditary Link in NCGS
    Researchers know for certain that genetic heredity plays a major role in celiac disease. If a first-degree relative has celiac disease, then you have a statistically higher risk of carrying genetic markers DQ2 and/or DQ8, and of developing celiac disease yourself. NCGS is not known to be hereditary. Some research has shown certain genetic associations, such as some NCGS patients, but there is no proof that NCGS is hereditary. No Connection with Celiac-related Disorders
    Unlike celiac disease, NCGS is so far not associated with malabsorption, nutritional deficiencies, or a higher risk of autoimmune disorders or intestinal malignancies. No Immunological or Serological Markers
    People with celiac disease nearly always test positive for antibodies to gluten proteins. Researchers have, as yet, identified no such antobodies or serologic markers for NCGS. That means that, unlike with celiac disease, there are no telltale screening tests that can point to NCGS. Absence of Celiac Disease or Wheat Allergy
    Doctors diagnose NCGS only by excluding both celiac disease, an IgE-mediated allergy to wheat, and by the noting ongoing adverse symptoms associated with gluten consumption. WHAT ABOUT IRRITABLE BOWEL SYNDROME (IBS) AND IRRITABLE BOWEL DISEASE (IBD)?
    IBS and IBD are usually diagnosed in part by ruling out celiac disease. Many patients with irritable bowel syndrome are sensitive to gluten. Many experience celiac disease-like symptoms in reaction to wheat. However, patients with IBS generally show no gut damage, and do not test positive for antibodies to gliadin and other proteins as do people with celiac disease. Some IBS patients also suffer from NCGS.

    To add more confusion, many cases of IBS are, in fact, celiac disease in disguise.

    That said, people with IBS generally react to more than just wheat. People with NCGS generally react to wheat and not to other things, but that’s not always the case. Doctors generally try to rule out celiac disease before making a diagnosis of IBS or NCGS. 
    Crohn’s Disease and celiac disease share many common symptoms, though causes are different.  In Crohn’s disease, the immune system can cause disruption anywhere along the gastrointestinal tract, and a diagnosis of Crohn’s disease typically requires more diagnostic testing than does a celiac diagnosis.  
    Crohn’s treatment consists of changes to diet and possible surgery.  Up to 10% of Crohn's patients can have both of conditions, which suggests a genetic connection, and researchers continue to examine that connection.
    Is There a Connection Between Celiac Disease, Non-Celiac Gluten Sensitivity and Irritable Bowel Syndrome? Large Number of Irritable Bowel Syndrome Patients Sensitive To Gluten Some IBD Patients also Suffer from Non-Celiac Gluten Sensitivity Many Cases of IBS and Fibromyalgia Actually Celiac Disease in Disguise CELIAC DISEASE DIAGNOSIS
    Diagnosis of celiac disease can be difficult. 

    Perhaps because celiac disease presents clinically in such a variety of ways, proper diagnosis often takes years. A positive serological test for antibodies against tissue transglutaminase is considered a very strong diagnostic indicator, and a duodenal biopsy revealing villous atrophy is still considered by many to be the diagnostic gold standard. 
    But this idea is being questioned; some think the biopsy is unnecessary in the face of clear serological tests and obvious symptoms. Also, researchers are developing accurate and reliable ways to test for celiac disease even when patients are already avoiding wheat. In the past, patients needed to be consuming wheat to get an accurate test result. 
    Celiac disease can have numerous vague, or confusing symptoms that can make diagnosis difficult.  Celiac disease is commonly misdiagnosed by doctors. Read a Personal Story About Celiac Disease Diagnosis from the Founder of Celiac.com Currently, testing and biopsy still form the cornerstone of celiac diagnosis.
    TESTING
    There are several serologic (blood) tests available that screen for celiac disease antibodies, but the most commonly used is called a tTG-IgA test. If blood test results suggest celiac disease, your physician will recommend a biopsy of your small intestine to confirm the diagnosis.
    Testing is fairly simple and involves screening the patients blood for antigliadin (AGA) and endomysium antibodies (EmA), and/or doing a biopsy on the areas of the intestines mentioned above, which is still the standard for a formal diagnosis. Also, it is now possible to test people for celiac disease without making them concume wheat products.

    BIOPSY
    Until recently, biopsy confirmation of a positive gluten antibody test was the gold standard for celiac diagnosis. It still is, but things are changing fairly quickly. Children can now be accurately diagnosed for celiac disease without biopsy. Diagnosis based on level of TGA-IgA 10-fold or more the ULN, a positive result from the EMA tests in a second blood sample, and the presence of at least 1 symptom could avoid risks and costs of endoscopy for more than half the children with celiac disease worldwide.

    WHY A GLUTEN-FREE DIET?
    Currently the only effective, medically approved treatment for celiac disease is a strict gluten-free diet. Following a gluten-free diet relieves symptoms, promotes gut healing, and prevents nearly all celiac-related complications. 
    A gluten-free diet means avoiding all products that contain wheat, rye and barley, or any of their derivatives. This is a difficult task as there are many hidden sources of gluten found in the ingredients of many processed foods. Still, with effort, most people with celiac disease manage to make the transition. The vast majority of celiac disease patients who follow a gluten-free diet see symptom relief and experience gut healing within two years.
    For these reasons, a gluten-free diet remains the only effective, medically proven treatment for celiac disease.
    WHAT ABOUT ENZYMES, VACCINES, ETC.?
    There is currently no enzyme or vaccine that can replace a gluten-free diet for people with celiac disease.
    There are enzyme supplements currently available, such as AN-PEP, Latiglutetenase, GluteGuard, and KumaMax, which may help to mitigate accidental gluten ingestion by celiacs. KumaMax, has been shown to survive the stomach, and to break down gluten in the small intestine. Latiglutenase, formerly known as ALV003, is an enzyme therapy designed to be taken with meals. GluteGuard has been shown to significantly protect celiac patients from the serious symptoms they would normally experience after gluten ingestion. There are other enzymes, including those based on papaya enzymes.

    Additionally, there are many celiac disease drugs, enzymes, and therapies in various stages of development by pharmaceutical companies, including at least one vaccine that has received financial backing. At some point in the not too distant future there will likely be new treatments available for those who seek an alternative to a lifelong gluten-free diet. 

    For now though, there are no products on the market that can take the place of a gluten-free diet. Any enzyme or other treatment for celiac disease is intended to be used in conjunction with a gluten-free diet, not as a replacement.

    ASSOCIATED DISEASES
    The most common disorders associated with celiac disease are thyroid disease and Type 1 Diabetes, however, celiac disease is associated with many other conditions, including but not limited to the following autoimmune conditions:
    Type 1 Diabetes Mellitus: 2.4-16.4% Multiple Sclerosis (MS): 11% Hashimoto’s thyroiditis: 4-6% Autoimmune hepatitis: 6-15% Addison disease: 6% Arthritis: 1.5-7.5% Sjögren’s syndrome: 2-15% Idiopathic dilated cardiomyopathy: 5.7% IgA Nephropathy (Berger’s Disease): 3.6% Other celiac co-morditities include:
    Crohn’s Disease; Inflammatory Bowel Disease Chronic Pancreatitis Down Syndrome Irritable Bowel Syndrome (IBS) Lupus Multiple Sclerosis Primary Biliary Cirrhosis Primary Sclerosing Cholangitis Psoriasis Rheumatoid Arthritis Scleroderma Turner Syndrome Ulcerative Colitis; Inflammatory Bowel Disease Williams Syndrome Cancers:
    Non-Hodgkin lymphoma (intestinal and extra-intestinal, T- and B-cell types) Small intestinal adenocarcinoma Esophageal carcinoma Papillary thyroid cancer Melanoma CELIAC DISEASE REFERENCES:
    Celiac Disease Center, Columbia University
    Gluten Intolerance Group
    National Institutes of Health
    U.S. National Library of Medicine
    Mayo Clinic
    University of Chicago Celiac Disease Center