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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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    CAN ANTHROPOMETRIC MEASURES AND PREVALENCE TRENDS TELL US ABOUT ADOLESCENTS WITH CELIAC DISEASE?


    Jefferson Adams

    Celiac.com 01/04/2017 - A team of researchers recently set out to investigate the impact of celiac disease diagnosis on anthropometric measures at late adolescence, and to assess trends in the prevalence of diagnosed celiac disease over time.


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    The research team included Amit Assa, Yael Frenkel-Nir, Ya'ara Leibovici-Weissman, Dorit Tzur, Arnon Afek, Lior H Katz, Zohar Levi, and Raanan Shamir. They are variously affiliated with the Institute of Gastroenterology, Nutrition and Liver Disease, Schneider Children's Medical Center, Petach Tikva, Israel, the Sackler Faculty of Medicine, Tel Aviv University, Tel Aviv, Israel, the Medical Corps of the Israel Defense Forces, Ramat-Gan, Israel, the Institute of Gastroenterology, Rabin Medical Center-Beilinson Campus, Petach Tikva, Israel, and with the Ministry of Health in Jerusalem, Israel.

    Around 17 years of age, most of the Israeli Jewish population undergoes a general health examination, before enlistment in the Defense Forces. Individual medical information, diagnoses, etc., are entered into a structured database. For their population based study, the research team reviewed the enlistment data base for celiac disease cases between the years 1988 and 2015.

    In all, the team reviewed the medical records of 2,001,353 individuals, focusing on body measurements and physical health at the age of 17 years.

    Overall, they found and assessed 10,566 cases of celiac disease (0.53%). Multivariable analysis showed that adolescent boys with celiac disease were leaner (Body Mass Index 21.2±3.7 vs 21.7±3.8, p=0.02), while girls with celiac disease were shorter (161.5±6 cm vs 162.1±6 cm, p=0.017) than the general population.

    The prevalence of diagnosed celiac disease increased from 0.5% to 1.1% in the last 20 years, mainly among females, who saw a rise of 0.64% vs 0.46% for males. Celiac disease rates were far lower in people of lower socioeconomic status, and those of African, Asian and former Soviet Union origin.

    However, the clinical relevance of the small differences suggests that when celiac disease is diagnosed during childhood, final weight and height are not severely impaired.

    The team's cohort supports an observed rise in celiac disease diagnoses in the last couple of decades.

    Source:


    Image Caption: Can body metrics and rate data help us better understand adolescents with celiac disease? Photo: CC--Wellness GM
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    Guest Rebecca acaatellano

    Posted

    This is exactly how my son Luke was diagnosed at 12. For years he was off the growth chart with doctors scratching their heads. They thought it was a growth hormone issue. Thankfully a doctor finally asked if he was ever tested for celiac? Bingo!

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  • Related Articles

    Jefferson Adams
    Celiac.com 07/16/2014 - Information about the number of cases and and overall rates of celiac disease and dermatitis herpetiformis in the UK have not been well studied over time, either by region or by age. Yet, this type of information is essential for determining potential causes and quantifying the impact of these diseases.
    To provide this information, a team of researchers recently conducted a population-based study to assess incidence and prevalence of celiac disease and dermatitis herpetiformis in the UK over two decades.
    The researchers included J. West, K.M. Fleming, L.J. Tata, T.R. Card, and C.J. Crooks. They are variously affiliated with the Division of Epidemiology and Public Health, City Hospital Campus, The University of Nottingham, the NIHR Biomedical Research Unit in Gastrointestinal and Liver Disease at Nottingham University Hospitals NHS Trust, and the Division of Epidemiology and Public Health at the City Hospital Campus of The University of Nottingham in Nottingham, UK.
    They used the Clinical Practice Research Datalink to identify patients with celiac disease or dermatitis herpetiformis between 1990 and 2011, and calculated incidence rates and prevalence by age, sex, year, and region of residence. They found a total of 9,087 incident cases of celiac disease and 809 incident cases of dermititis herpetiformis.
    From 1990 to 2011, the incidence rate of celiac disease rose from 5.2 per 100,000 (95% confidence interval (CI), 3.8-6.8) to 19.1 per 100,000 person-years (95% CI, 17.8-20.5; IRR, 3.6; 95% CI, 2.7-4.8). During that same period, incidence of dermatitis herpetiformis decreased from 1.8 per 100,000 to 0.8 per 100,000 person-years (average annual IRR, 0.96; 95% CI, 0.94-0.97).
    The absolute incidence of celiac disease per 100,000 person-years ranged from 22.3 in Northern Ireland to 10 in London. Celiac disease showed large regional variations in prevalence, while dermatitis herpetiformis did not.
    The team found a fourfold increase in the incidence of celiac disease in the United Kingdom over 22 years, with large regional variations in prevalence.
    This contrasted with a 4% annual decrease in the incidence of dermatitis herpetiformis, with minimal regional variations in prevalence.
    These contrasts could reflect differences in diagnosis between celiac disease (serological diagnosis and case finding) and dermatitis herpetiformis (symptomatic presentation) or the possibility that diagnosing and treating celiac disease prevents the development of dermatitis herpetiformis.
    Source:
    Am J Gastroenterol. 2014 May;109(5):757-68. doi: 10.1038/ajg.2014.55. Epub 2014 Mar 25.

    Jefferson Adams
    Celiac.com 01/14/2015 - Recent epidemiological studies show that celiac disease rates are still underestimated, both in Europe and in Mediterranean regions. But how is better testing impacting higher celiac numbers in Europe?
    To get a clearer picture, a team of researchers recently set out to review the latest data on celiac rates and incidence in the European Union (EU) as of September 2014.
    The research team included E. Altobelli, R. Paduano, R. Petrocelli, and F. Di Orio. They are variously affiliated with the Department of Life, Health and Environmental Sciences at the University of L'Aquila in L'Aquila, Italy, and with ASREM in Molise, Italy.
    They assessed the celiac disease rates and cases by conducting a search of PubMed for papers in English using the key words "celiac disease", "celiac disease plus prevalence" (limits: 1990-2014), "incidence" (limits: 1970-2014), and "frequency", plus "in Europe". They conducted additional searches using the same key words plus the name of each European country.
    The team included only prevalence data obtained by serology using anti-gliadin antibodies (AGA), EMA test, tTG test, and/or duodenal biopsy, and only studies that were retrospective and prospective, such as population-based, cross-sectional, case-control and cohort studies.
    They found that the overall undiagnosed celiac population in EU is 0.5-1%, whereas the highest estimate reported in population-based studies is approximately 1%.
    Considering data from different periods, incidence seems to range from 0.1 to 3.7/1000 live births in the child population and from 1.3 to 39/100,000/year in the adult population.
    Interestingly, though perhaps unsurprisingly, the data show clear geographical variation in both cases and rates of celiac disease in various European countries.
    They note a rising occurrence of celiac disease in recent decades in European countries, due partly to the advent of improved serological testing (tTG + EMA) and partly to increased awareness of its clinical presentation.
    Source:
    Ann Ig. 2014 Nov-Dec;26(6):485-98. doi: 10.7416/ai.2014.2007.

    Jefferson Adams
    Celiac.com 06/24/2015 - The Danish National Patient Registry records about 50 cases of celiac disease per 100,000 persons. This is much lower than the celiac rates reported in other Nordic countries, and many doctors have suspected that the condition is being under-diagnosed.
    So, how common is under-diagnosis of celiac disease? A team of researchers recently set out to answer that question by conducting a population-based study of Danish adults. The research team included A. Horwitz, T. Skaaby, L.L. Kårhus, P. Schwarz, T. Jørgensen, J.J. Rumessen, and A. Linneberg. They are affiliated with the Research Centre for Prevention and Health, The Capital Region at the University of Copenhagen in Copenhagen, Denmark.
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    None of the above 56 participants had a known history of celiac disease or a recorded diagnosis of celiac disease in National Patient Registry.
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    This figure is 10 times higher than the registry-based prevalence of celiac disease.
    Of 11 participants diagnosed with celiac disease in our screening study, 10 were unaware of the diagnosis prior to the study.
    Thus, the team suggests that celiac disease is profoundly under-diagnosed in Danish adults.
    Source:
    Scand J Gastroenterol. 2015 Jul;50(7):824-31. doi: 10.3109/00365521.2015.101057.

    Jefferson Adams
    Celiac.com 09/26/2016 - Previous studies have indicated an increase in celiac disease rates in the United States, but these studies have been done on narrow populations, and did not produce results that are nationally representative.
    Researchers recently released an new comprehensive report, called, Time Trends in the Prevalence of Celiac Disease and Gluten-Free Diet in the US Population: Results From the National Health and Nutrition Examination Surveys 2009-2014. The research team included Hyun-seok Kim, MD, MPH; Kalpesh G. Patel, MD1; Evan Orosz, DO; Neil Kothari, MD; Michael F. Demyen, MD; Nikolaos Pyrsopoulos, MD, PhD, MBA; and Sushil K. Ahlawat, MD. They are variously affiliated with the Division of Gastroenterology and the Department of Medicine at Rutgers New Jersey Medical School in Newark.
    Using data from the National Health and Nutrition Examination Surveys, a team of researchers recently examined current trends in both celiac disease rates, and gluten-free diet adherence.
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    This research teams recent surveys examine the current trends in the prevalence of celiac disease and adherence to a gluten-free diet, including people without celiac disease, using nationally representative data from the National Health and Nutrition Examination Surveys (NHANESs) 2009-2014.
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    The researchers found that 106 (0.69%) individuals had a celiac disease diagnosis, and 213 (1.08%) followed a gluten-free diet but didn't have celiac disease. These results correlate to an estimated 1.76 million people with celiac disease, and 2.7 million people who follow a gluten-free diet without a diagnosis of celiac disease in the United States.

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  • Recent Articles

    Connie Sarros
    Celiac.com 04/21/2018 - Dear Friends and Readers,
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    Jefferson Adams
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    First, the team used liquid chromatography-tandem mass spectrometry (LC/MS) to analyze amino acid levels in fasting plasma samples from 141 children with celiac disease and 129 non-celiac disease controls. They then crafted a general linear model using age and experimental effects as covariates to compare amino acid levels between children with celiac disease and non-celiac control subjects.
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    Source:
    PLoS One. 2018; 13(3): e0193764. doi: & 10.1371/journal.pone.0193764

    Jefferson Adams
    Celiac.com 04/18/2018 - To the relief of many bewildered passengers and crew, no more comfort turkeys, geese, possums or other questionable pets will be flying on Delta or United without meeting the airlines' strict new requirements for service animals.
    If you’ve flown anywhere lately, you may have seen them. People flying with their designated “emotional support” animals. We’re not talking genuine service animals, like seeing eye dogs, or hearing ear dogs, or even the Belgian Malinois that alerts its owner when there is gluten in food that may trigger her celiac disease.
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    Delta was the first to strike. As reported by the New York Times on January 19: “Effective March 1, Delta, the second largest US airline by passenger traffic, said it will require passengers seeking to fly with pets to present additional documents outlining the passenger’s need for the animal and proof of its training and vaccinations, 48 hours prior to the flight.… This comes in response to what the carrier said was a 150 percent increase in service and support animals — pets, often dogs, that accompany people with disabilities — carried onboard since 2015.… Delta said that it flies some 700 service animals a day. Among them, customers have attempted to fly with comfort turkeys, gliding possums, snakes, spiders, and other unusual pets.”
    Fresh from an unsavory incident with an “emotional support” peacock incident, United Airlines has followed Delta’s lead and set stricter rules for emotional support animals. United’s rules also took effect March 1, 2018.
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    Source:
    cnbc.com

    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