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      Frequently Asked Questions About Celiac Disease   04/24/2018

      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 is Celiac Disease and the Gluten-Free Diet? 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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    LATENT CELIAC DISEASE AFFLICTS MANY WHO TOLERATE GLUTEN


    Jefferson Adams

    Celiac.com 11/08/2007 - A team of doctors led by Christophe Cellier from the Hopital European Georges Pompidou in Paris examined a group people who were diagnosed with celiac disease as children and who tolerated the introduction of gluten into their diets, and continued to consume gluten into their adult years.


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    A total of 61 patients were evaluated with a bowel biopsy. 13 of the subjects exhibited no indications of the disease, a condition known as latent celiac disease. 48 of the patients without symptoms showed celiac-related intestinal damage, a condition known as silent celiac disease.

    The study team observed that a similar ratio of patients with both latent celiac and silent celiac disease exhibited minor symptoms of celiac disease. Both patients with symptoms and those without symptoms had similar indications of malabsorption and similar body mass idices.

    Loss of bone density was more common in those with silent celiac disease than in those with latent celiac disease. Patients with silent celiac disease more regularly showed elevated levels of celiac-positive antibodies. As far as clinical symptoms of celiac disease, such as blood and antibody tests, the two groups showed no major differences.

    The researchers concluded that even with no symptoms, most people diagnosed with celiac disease as children go on to develop active celiac disease as adults. Such patients should undergo screening for villous atrophy, and osteopenia, and should be encouraged to resume their gluten-free diet in the event that villous atrophy is detected.

    Colleagues at Finland’s University of Tampere go so far as to say that even patients with latent celiac disease should follow a strict gluten-free diet. They feel that villous atrophy is only a small part of the equation, and a sign of well-advanced celiac, and that the use of mucosal damage as a standard for diagnosing celiac disease is incomplete and can lead to missed diagnosis and otherwise preventable damage.

    Gut 2007; 56: 1379-1386, 1339-1340


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    Having a granddaughter diagnosed as a 3 year old, now 23, and doing extremely well, I am pleased that so much is being done in this area. Being on a gluten-free diet since 3, has not inhibited her from any activities in life, including rock climbing, etc.

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    Guest Barbara Coots

    Posted

    I am 57 and onset of symptoms at 52. There are several friends diagnosed after 50. Thanks for the news. Barbara

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    A very concise explanation of the differences between latent and silent celiac disease, and why they both must adhere to the gluten-free diet.

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    Guest Gerald Jones

    Posted

    Much better than a couple of previous articles I read. I am 65 and did not display celiac symptoms until I was 63.

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    Guest Carrie Gervais

    Posted

    As a person with so-called 'silent celiac disease', diagnosed at age 40 after my son's diagnosis, readers need to keep in mind that what seems to be 'silent' may be quite pronounced, in comparison to how one can feel when on the gluten free diet. Clear thinking, much higher energy level, and less anxiety are just a few of the gluten free diet's benefits awaiting those with 'silent celiac disease'.

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    Guest Sue Petit

    Posted

    Excellent article. Though not diagnosed until age 47, but I am pretty sure it was a problem all of my life. Didn't get diagnosed until chronic symptoms. Major wasting due to no absorption of nutrients.

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    Guest David Lapham

    Posted

    I am 61 and have had dermatitis herpetaformis for over 22 years, but was never told anything about celiac disease. I tried a gluten-free diet in the middle 80s' but had to little information to go on. I have had problems since age 6 months that have significantly improved or totally cleared up since I have been gluten-free. To name a few, Upper respiratory infections 100s of times, digestive problems including stomach surgery (Atrophied duodenum and ulcers disease) anxiety, swelling on legs and ankles, dermatitis herpetaformis, peripheral neuropathy, pernicious anemia, and several others.

    So I agree with a previous post that said that after beginning a gluten-free diet one may find a lot of things are better. For me, feeling so much better is what makes it worth all the expense and hard ship involved with the diet. I almost died before I found out what it was. Thanks to the Harvard Medical School's, Beth Israel Hospital, School of Dermatology's web site, I found that dermatitis herpetaformis is a positive diagnosis for celiac disease.

    Thanks for a good article,

    David Lapham Sr

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    Guest Kathleen Eickwort

    Posted

    I have a brother who was diagnosed with celiac as a child and tends to eat now a diet very high in meat and potatoes...little bread, but certainly not gluten-free. He had ITP, though. It could be related.

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    Guest Evelyn Schindler

    Posted

    Diagnosed for 2 years but had celiac problems for so long am still not healed...information is good...has been a big help to me.

    Thanks

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    Guest Patrick Armstead

    Posted

    I have been diagnosed for about 3.5 years now, but I'm sure that I had it well over 30 years before then. By chance I was just talking with a doctor at work after eating a healthy serving of waffles--one of my favorite meals. He made a bet with me that I had celiac--I said no, it was from my stomach surgery 35 years before. He ran some tests Glanin IGG normal was <11 High was 27-30, mine was 97mg/dl. I have been on the diet since June 2005 and with in a few weeks felt so much better, I wouldn't want to go back. But it is hard to go out with friends and family to eat.

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    Guest Bonnell Penne

    Posted

    I was diagnosed with Celiac Sprue 30 years ago at the age of 13 months by biopsy and they said it was a classic case. In March of 2007, 29 years later at the age of 30, after a negative biopsy blood tests were done to confirm and they were negative as well for Celiac Sprue. I questioned the Gastroenterologist as to what is was 30 years prior and I didn't receive any answers. To this day I still have to question if the tests 30 years ago were wrong or not. I have introduce regular foods into my diet and haven't noticed that I feel any different. I include whole grain foods into my diet 1-2 times a day and have been doing fine. After reading this article I hope that the tests so long ago really were wrong as I do not want to be hurting my body and not know it. Could test results come back negative for Celiac when it really is 'Silent or Laten' celiac.

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    Guest patricia

    Posted

    Thank you for the info. Many people think that I am lying when I discuss these issues of more than the typical 'fat-bellied malnourished child with chronic diarrhea'...

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    But in this article, it is said, that adults were reintroducing a normal diet, that is, with a lot of wheat. But, what´s happened with the little quantity every day?

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    admin

    W. Dickey, S.A. McMillan, D.F. Hughes
    Scandinavian Journal of Gastroenterology 1998; 33: 491-3
    Departments of Gastroenterology and Histopathology, Altnagelvin Hospital, Londonderry; Regional Immunology Service, Royal Group of Hospitals, Belfast; Northern Ireland, UK
    Background: Coeliac disease is common yet often undiagnosed because symptoms may be trivial, non-specific, or non-gastrointestinal, or because of lack of clinician awareness. Serum IgA class endomysial antibodies (EmA) have high specificity for coeliac disease and may facilitate case-finding by clinicians other than gastroenterologists. We assessed the appropriateness and diagnostic yield of requests for EmA by primary care general practitioners in a defined geographical area of Northern Ireland. Methods: We identified patients who had EmA requests by their general practitioners during 1994-1996. Individual patient questionnaires were posted to the general practitioners concerned, seeking information on indications for testing, management following the result and final diagnosis. We compared new patient diagnosis rates in two catchment areas, one served by a large district general hospital with a medical gastroenterology facility and the other by smaller hospitals without.
    Results: A total of 239 patients had coeliac profile testing by 69 of 177 general practitioners in the area. Data were available for 181 patients not previously known to have coeliac disease of whom 20 (11%) had EmA. All EmA +ve patients were referred to hospital where 19 underwent small bowel biopsy, which confirmed coeliac disease in all 19. Only 7 (35%) of the 20 had diarrhea and there was no significant difference in EmA prevalence among patients tested with and without diarrhea. Although the mean number of new patients (per 100,000 population per annum) diagnosed by biopsy was 11 at the large hospital compared with 5 elsewhere, the numbers identified by EmA in general practice for the two catchment areas were similar (2, 3). Conclusion: General practitioners have an important role in the identification of patients with coeliac disease, particularly where there is no local medical gastroenterology facility, which is facilitated by EmA testing.

    admin

    The following was sent to me from Rio de Janeiro by Dr. José Cesar da Fonseca Junqueira. If you have any questions you can e-mail him at: cjunqueira@ax.apc.org.br
    Rio de Janeiro - 05/27/96 - Celiac Disease. A Comparative study of two periods. Junqueira JC, Calçado AC, Percope S. 1996 Federal University of Rio de Janeiro Martagão Gesteira - Institute of Pediatrics. The aim of this study was to compare cases of celiac disease diagnosed in outpatients with malabsortion cases. The study was conducted at the Pediatric Gastroenterology Service of the Pediatric Institute Martagão Gesteira at the Federal University of Rio de Janeiro Brazil. It was done in two phases: from 1975 -1984 and from 1985 - 1994 (group 1, N=31 and group 2, N=21). Patients were selected based on the results of jejunal biopsy (group IV) and the favorable reaction to a gluten free diet. Data from the first interview (age, sex, nutritional status and prevalent symptoms) were analyzed. The number of biopsies and the level of compliance with the diet were also observed. The data collected was processed in a computer using EPI INFO 6.03 (January 1996)as software. The frequency of celiac disease over the studied years was compared with international data. There were no significant differences between the two groups in our study. However, the cases free of gastroenterological symptoms (atypical celiac disease) were not observed. The average age difference between the groups (group um X=24,39 months; group 2 X=32,03) was not statistically significant. A bigger study must be carried out to prove this theory. The analysis of nutritional status of the groups reveals the existence of severely undernourished patients. The number of biopsies and the level of compliance with diet were similar in the two groups. The decrease in the number of cases as well the increase in the age of patients were observed in group 2. These phenomena were probably due to a delayed exposure to gluten and to the expansion of the period of breast feeding. Other causes should be analyzed in a bigger research program. The conclusion of this study shows that there has been no change in the clinical features of the disease and points to the need for serological screening so that the entire spectrum of the disease can be established.
    Both groups had malabsorption and were very under-nourished (over 45%). One patient was diagnosed as having Diabetes Mellitus several years after and an other one is under investigation for poliarthrites. Serological investigation is not available in our country. The final conclusion is that we must have such serological screening to know the real spectrum of the disease. Adult celiac disease is not diagnosed in our country, mainly because the adult doctors do not know the full spectrum of celiac disease.
    Ill be presenting this work as a thesis at the University on May 29, 1996.

    Jefferson Adams
    Celiac.com 10/17/2013 - A gluten-free diet is till the only treatment for celiac disease, but a number of companies are working on pharmaceutical treatments. However, very little information exists bout the level of interest among patients in using a medication to treat celiac disease.
    A research team set out to assess interest levels among patients in medical treatments for celiac disease. The research team included Christina A. Tennyson, Suzanne Simpson, Benjamin Lebwohl, Suzanne Lewis and Peter H. R. Green.
    For their study, the researchers submitted a questionnaire to celiac disease patients and collected data on demographics, presentation, and interest in medication. The questionnaire included three validated celiac disease-specific instruments: Celiac Disease Associated Quality of Life, the Celiac Symptom Index, and the Celiac Dietary Adherence Test.
    The team received 365 responses from people with biopsy-proven celiac disease. A total of 276 women and 170 men over 50 years of age responded to the study. Of these respondents, 154 experienced classic, diarrhea predominant celiac disease. In all 339 people responded to the question asking if they were interested in using a medication to treat celiac disease, 66% of whom indicated that they were interested.
    The questionnaire responses broke down as follows:
    Older people showed the greatest interest, with 71% of people over 50 years of age saying they were interested, compared with 60% of people under 50 years of age, (p = 0.0415). More men (78%) than women (62%) women were interested (p = 0.0083). People who ate out frequently (76%) showed a greater interest than those who did not (58%), p = 0.0006). People dissatisfied with their weight showed greater interest (73%) than those satisfied with their weight (51%), (p = 0.0003) Lastly, those concerned with gluten-free diet costs (77%) showed greater interest than those not concerned about gluten-free diet costs (64%), (p = 0.0176). Interestingly, the list of factors that did not seem to influence interest included length of time since diagnosis, education, presentation, and symptoms with gluten exposure.
    Overall, celiacs with lower quality of life scores showed a higher interest in medication (celiac disease-QOL 69.4 versus 80.1, p < 0.0001).
    This survey shows a fairly strong interest among people with celiac disease in non-dietary, medical treatments.
    Interest was highest among men, older individuals, frequent restaurant customers, individuals dissatisfied with their weight or concerned with the cost of a gluten-free diet, and those with a worse quality of life.
    Just how well any drugs developed to treat celiac disease might be received will likely depend on many factors, including efficacy, side-effects, cost, ease of use, etc.
    Source:
     Ther Adv Gastroenterol. 2013;6(5):358-364.

    Jefferson Adams
    Celiac.com 09/03/2014 - What’s potential celiac disease, and what happens to kids who have it and continue to eat a gluten-containing diet?
    Researchers define potential celiac disease as the presence of serum anti-tissue-transglutaminase (anti-TG2) antibodies with normal duodenal mucosa. That is, a positive blood screen, but no intestinal damage. However, not much is known about potential celiac disease because people who have it often show no obvious symptoms. Patients with potential celiac disease present some challenges for doctors trying to determine how likely it is that these patients will develop villous atrophy, the gut damage common in celiac disease patients exposed to gluten.
    A research team conducted a prospective longitudinal cohort study to follow patients with potential celiac disease up to 9 years, and explore the risk factors tied to mucosal damage. The research team included Renata Auricchio MD, PhD, Antonella Tosco MD, Emanuela Piccolo MD, Martina Galatola PhD, Valentina Izzo PhD, Mariantonia Maglio PhD, Francesco Paparo PhD, Riccardo Troncone MD, PhD, and Luigi Greco MD, PhD. They are affiliated with the Department of Medical Translational Science, European Laboratory for the Investigation of Food Induced Disease (ELFID), University Federico II, Naples, Italy.
    For their study, the team found two hundred and ten asymptomatic children with potential celiac disease. They kept 175 of them on a gluten-containing diet. To evaluate histological, immuno-histochemical, and anti-TG2 status, they checked blood antibody levels and clinical symptoms every 6 months, and took a small bowel biopsy every two years. They also genotyped all patients for HLA and non-HLA celiac-associated genes.
    Forty-three percent of patients showed persistently elevated anti-TG2 levels, 20% became negative during follow-up, and 37% showed variations in anti-TG2 course, with many patients testing at zero anti-TG2.
    After three years of follow-up, 86% of study patients continued to have potential celiac disease. After 6 and 9 years, respectively, 73% and 67% of study patients still had normal duodenal structure.
    Individuals prone to develop mucosal damage during the test period were predominantly male, had slight mucosal inflammation at study’s start, and fit a peculiar genetic profile.
    Nine years after follow-up, a large number of patients with asymptomatic potential celiac disease showed reduced antibody production, many even showing zero production, and many of these, with persistently positive anti-TG2, showed no mucosal damage.
    Given the results of this study, and noting that the celiac population is in fact made up of numerous individuals with diverse genetic and phenotypic makeup, the researchers are advising doctors to be cautious in prescribing a strict lifelong gluten-free diet for asymptomatic individuals with potential celiac disease.
    Source:
     The American Journal of Gastroenterology

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    Celiac.com 04/26/2018 - Emily Dickson is one of Canada’s top athletes. As a world-class competitor in the biathlon, the event that combines cross-country skiing with shooting marksmanship, Emily Dickson was familiar with a demanding routine of training and competition. After discovering she had celiac disease, Dickson is using her diagnosis and gluten-free diet a fuel to help her get her mojo back.
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    In 2017 alone, FEMA (Federal Emergency Management Agency) had 137 natural disasters declared within the United States. According to FEMA, around 50% of the United States population isn’t prepared for a natural disaster. These disasters can happen anywhere, anytime and some without notice. It’s hard enough being a parent, let alone being a parent of a gluten free family member. Now, add a natural disaster on top of that. Are you prepared?
    You can find my Gluten Free Emergency Food Bags and other useful products at www.allergynavigator.com.  

    Jefferson Adams
    Celiac.com 04/23/2018 - A team of researchers recently set out to learn whether celiac disease patients commonly suffer cognitive impairment at the time they are diagnosed, and to compare their cognitive performance with non-celiac subjects with similar chronic symptoms and to a group of healthy control subjects.
    The research team included G Longarini, P Richly, MP Temprano, AF Costa, H Vázquez, ML Moreno, S Niveloni, P López, E Smecuol, R Mazure, A González, E Mauriño, and JC Bai. They are variously associated with the Small Bowel Section, Department of Medicine, Dr. C. Bonorino Udaondo Gastroenterology Hospital; Neurocience Cognitive and Traslational Institute (INECO), Favaloro Fundation, CONICET, Buenos Aires; the Brain Health Center (CESAL), Quilmes, Argentina; the Research Council, MSAL, CABA; and with the Research Institute, School of Medicine, Universidad del Salvador.
    The team enrolled fifty adults with symptoms and indications of celiac disease in a prospective cohort without regard to the final diagnosis.  At baseline, all individuals underwent cognitive functional and psychological evaluation. The team then compared celiac disease patients with subjects without celiac disease, and with healthy controls matched by sex, age, and education.
    Celiac disease patients had similar cognitive performance and anxiety, but no significant differences in depression scores compared with disease controls.
    A total of thirty-three subjects were diagnosed with celiac disease. Compared with the 26 healthy control subjects, the 17 celiac disease subjects, and the 17 disease control subjects, who mostly had irritable bowel syndrome, showed impaired cognitive performance (P=0.02 and P=0.04, respectively), functional impairment (P<0.01), and higher depression (P<0.01). 
    From their data, the team noted that any abnormal cognitive functions they saw in adults with newly diagnosed celiac disease did not seem not to be a result of the disease itself. 
    Their results indicate that cognitive dysfunction in celiac patients could be related to long-term symptoms from chronic disease, in general.
    Source:
    J Clin Gastroenterol. 2018 Mar 1. doi: 10.1097/MCG.0000000000001018.

    Connie Sarros
    Celiac.com 04/21/2018 - Dear Friends and Readers,
    I have been writing articles for Scott Adams since the 2002 Summer Issue of the Scott-Free Press. The Scott-Free Press evolved into the Journal of Gluten Sensitivity. I felt honored when Scott asked me ten years ago to contribute to his quarterly journal and it's been a privilege to write articles for his publication ever since.
    Due to personal health reasons and restrictions, I find that I need to retire. My husband and I can no longer travel the country speaking at conferences and to support groups (which we dearly loved to do) nor can I commit to writing more books, articles, or menus. Consequently, I will no longer be contributing articles to the Journal of Gluten Sensitivity. 
    My following books will still be available at Amazon.com:
    Gluten-free Cooking for Dummies Student's Vegetarian Cookbook for Dummies Wheat-free Gluten-free Dessert Cookbook Wheat-free Gluten-free Reduced Calorie Cookbook Wheat-free Gluten-free Cookbook for Kids and Busy Adults (revised version) My first book was published in 1996. My journey since then has been incredible. I have met so many in the celiac community and I feel blessed to be able to call you friends. Many of you have told me that I helped to change your life – let me assure you that your kind words, your phone calls, your thoughtful notes, and your feedback throughout the years have had a vital impact on my life, too. Thank you for all of your support through these years.