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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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    FACTORS AFFECTING HEALTH-RELATED QUALITY OF LIFE ISSUES FOR ADULTS WITH CELIAC DISEASE


    Jefferson Adams


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    Celiac.com 05/08/2007 - For people with celiac disease, accurate and comprehensive information on maintaining a healthy, high-level quality of life can be difficult to find. Research is particularly sketchy with respect to factors that have a negative impact on health and quality of life for adults with celiac disease.

    Factors that have a negative impact on health and quality of life are often modifiable through changes in diet, or adjustments in treatment. Thus researchers are motivated to identify which celiac patient groups are at risk of being impacted in a negative way, and to determine which adjustments might bring positive results.

    In an effort to refine treatment approaches and improve the lives of patients with celiac disease, clinical researchers in Gastroenterology have become increasingly interested in health-related quality of life issues as primary or secondary endpoints in their studies.

    A recent study published online in Medscape Today suggests that, in addition to physical and mental co-morbidities, a failure to sustain a gluten-free diet and disappointment with doctor-patient communication are also important factors associated with health-related quality of life concerns in people with celiac disease.

    Motivated by inconsistencies in available data, a team of German researchers made up of Drs. W. Häuser, A. Stallmach, W. F. Caspary, and J. Stein, set out to evaluate the various predictors for reduced health-related quality of life in adult patients with celiac disease.

    Using logistic regression analysis, the researchers catalogued responses to medical and socio-demographic questionnaires by 1000 adult celiac disease patients who were members of the German Coeliac Society.

    The subjects responded to the following three survey questionnaires, which were administered by post:
    1) the Short-Form Health Survey (SF-36); 2) the Celiac Disease Questionnaire; 3) the Hospital Anxiety and Depression Scale.

    The results showed that physical co-morbidities (ß = -0.41; OR = 0.66, P < 0.001) and mental disorder (ß = 0.88; OR = 2.4, P = 0.03) were associated with a reduced physical summary score of the SF-36 Scale.

    Mental disorder (ß = 2.5; OR = 11.9, P < 0.001), physical co-morbidities (ß = -0.26; OR = 0.77, P = 0.004) and younger age at diagnosis (ß = -0.10; OR = 0.91, P = 0.05) predicted a reduced mental summary score of the SF-36 Scale.

    Mental disorder (ß = 0.90; OR = 2.5, P = 0.03), non-compliance with gluten-free diet (ß = 0.44; OR = 1.6, P = 0.009), active medical co-morbidities (ß = -0.28; OR = 0.76, P = 0.007) and dissatisfaction with doctor–patient communication (ß = 0.55; OR = 1.7, P = 0.03) were associated with reduced Celiac Disease Questionnaire scores.

    In adult patients with celiac disease, the following factors were associated with reduced health-related quality of life: female gender, younger age at diagnosis, newly diagnosed patients, latency of diagnosis, failure to follow a gluten-free diet, anxiety and somatic and psychiatric co-morbidity.

    Until this study, attempts to measure health status in patients with celiac disease relied on generic health-related quality of life methods, rather than validated, disease specific instruments, and thus the relative predictive value of these variables had not been fully assessed.

    Aliment Pharmacol Ther. 2007;25(5):569-578.

     


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    I need to do more studying on this to really get an understanding of the terms used in this article.

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    admin
    The following Medline abstract describes a unique study that was done on the quality of life of two groups of people with celiac disease: One that was diagnosed as the result of having symptoms, and the other which had little or no symptoms and whose diagnosis was reached via screen-detection. Both groups were treated for one year with a gluten-free diet, and were then studied to determine their overall response, including their psychological response. Here is the abstract:
    Eff Clin Pract 2002 May-Jun;5(3):105-13
    Mustalahti K, Lohiniemi S, Collin P, Vuolteenaho N, Laippala P, Maki M.
    Department of Pediatrics, Tampere University Hospital, Finland.
    CONTEXT: Since the advent of serologic testing for celiac disease, most persons who receive a diagnosis of celiac disease have few or no symptoms. Although pathologic changes of celiac disease resolve on a gluten-free diet, how a gluten-free diet affects the quality of life for patients with screen-detected celiac disease is unclear.
    OBJECTIVE: To evaluate the effect of a gluten-free diet on the quality of life of patients with screen-detected celiac disease.
    DESIGN: Prospective study of patients before and 1 year after initiating a gluten-free diet.
    PARTICIPANTS: 19 patients with screen-detected celiac disease (found by serologically testing first-degree relatives of celiac patients) and 21 consecutive patients with symptom-detected disease. In all cases, celiac diagnosis was confirmed by finding villous atrophy and crypt hyperplasia on small-bowel biopsy.
    INTERVENTION: Gluten-free diet (explained during a single physician visit). MAIN OUTCOME
    MEASURES: Gastrointestinal Symptoms Rating Scale (GSRS), in which scores range from 0 to 6 (higher scores represent worse symptoms); and quality of life measured with the Psychological General Well-Being Questionnaire (PGWB). Scores range from 22 to 132 (higher scores mean greater well-being).
    RESULTS: At baseline, patients with symptom-detected celiac disease had poorer quality of life and more gastrointestinal symptoms than those with screen-detected celiac disease. Reported compliance with the gluten-free diet was good. All mucosal lesions of the small bowel had resolved at the follow-up biopsy. After 1 year of following the diet, quality of life for patients with screen-detected disease significantly improved (mean PGWB score increased from 108 to 114; P
    CONCLUSIONS: Gluten-free diet was associated with improved quality of life for patients with symptom-detected celiac disease and patients with screen-detected celiac disease. Concerns about the burden of a gluten-free diet, at least over the short term, may be unfounded.
    PMID: 12088289


    admin

    Scand J Caring Sci. 2003 Sep;17(3):301-7
    Celiac.com 09/03/2003 - A recent study published in the Scandinavian Journal of Caring Sciences looked at the differences in how men and women cope with celiac disease. The study concludes that gender should be taken into account in the treatment of celiac disease to improve its outcome. The biggest flaw in this study is with the number of people in it—only 10. I think that it is difficult to draw such conclusions using such a small sample of people, and that a larger study of this type needs to be done to draw more solid conclusions. Additionally, the poorer outcome for women in this study may be due to the fact that they experienced more bowel-related symptoms than did the men, which may not be due at all to their "emotionally oriented strategy" of coping. It could just be a fact that women with celiac disease experience more real health problems than men, which is also in need of further study. - Scott Adams
    Here is the abstract:

    "Perceptions of health-related quality of life of men and women living with coeliac disease."
    Hallert C, Sandlund O, Broqvist M.
    Coeliac Centre, Faculty of Health Sciences, Linkoping University, Linkoping, Sweden.
    "Women with long-standing coeliac disease express poorer health-related quality of life (HRQoL) than men do for unclear reasons. This led us to explore differences in their understanding of HRQoL using a phenomenographic approach. We interviewed 10 coeliac subjects (mean age 57 years, range 35-73) who had been on a gluten-free diet for 10 years and had scored either high or low in the Short Form 36 Health Survey (SF-36) General Health and Vitality scales. Three dimensions were revealed that pertained to their perception of HRQoL: bodily sensations, social consequences and coping strategies. Within these, the women experienced more bowel symptoms than men did, despite keeping to a strict diet. This item was the only one predicting the SF-36 scores. The women also described more distress caused by the restrictions in daily life, closely related to their controlling of food contents. The coeliac men took advantage of using a problem-oriented coping approach while the women seeking an emotionally oriented strategy showed less satisfaction with the outcome. We conclude that the intriguing difference in HRQoL between coeliac men and women may have some of its origin in the way living with the disorder is conceptualized and coped with. The results imply that in the management of coeliac patients, gender-related aspects need to be taken into account to improve treatment outcome."

    Jefferson Adams
    Celiac.com 06/30/2008 - In the crypts of the small bowel, there is a group of small, granular epithelial cells, called Paneth cells, which play an important part in innate immune system. There has been some controversy about what role Paneth cells might play in complicating celiac disease, so team of Italian researchers set out to examine the distribution, proliferation, and function of paneth cells in adults with uncomplicated and complicated celiac disease.
    The research team was made up of P. Biancheri , Cdel V. Blanco, L. Cantoro, M. De Vincenzi, A. Di Sabatino, W. Dhaliwal, E. Miceli, R. Salerno, A. Vanoli,  T.T. Macdonald, and G.R. Corazza. The team is affiliated with the Celiac Specialty Center at the First Department of Medicine at University of Pavia in Pavia, Italy.
    Seeking to better understand the function and the numbers of Paneth cell adults with celiac disease (celiac disease), the team measured Paneth cells and human alpha-defensin (HD)-5 and HD-6 in 28 adults with uncomplicated celiac disease, 8 patients with complicated celiac disease (3 with ulcerative jejunoileitis, 2 with refractory sprue, and 3 with enteropathy-associated T-cell lymphoma), and 14 control subjects.
    Subjects with uncomplicated untreated and treated celiac disease showed similar numbers of Paneth cells, with similar cell proliferation, compared to the control group, while subjects with complicated celiac disease showed much fewer Paneth.
    Subjects with uncomplicated untreated celiac disease, and those with treated celiac disease showed similar levels of mucosal HD-5 and HD-6 compared to the control group, while cells taken from the biopsies of subjects with treated celiac disease and challenged with gliadin proteins showed no change in mucosal HD-5 and HD-6 transcripts.
    Furthermore, those subjects with uncomplicated celiac disease showed no reduction in mucosal Paneth cell numbers and alpha-defensins.
    Clearly, a small study such as this will not tell us exactly how a reduction in the numbers of Paneth cells might complicate celiac disease, but since the role of Paneth cells is so vital to healthy innate immune function, it does point to the need for further examination.
    Am J Clin Pathol. 2008 Jul;130(1):34-42.


    Jefferson Adams
    Celiac.com 03/13/2009 - A recent study confirms that celiac disease affects adults with Turner Syndrome at rates of up to 5%, compared to 1% for the general population.
    A team of researchers recently set out to assess rates of celiac disease in adults with Turner Syndrome. Led by doctor A. Frost of the Department of Endocrinology at University College Hospital in London, UK, the research team included doctors M. Band, G. Conway.
    The researchers enlisted 256 adults with clinically proven Turner Syndrome. Five turned out to have existing diagnosis of celiac disease. The team conducted IgA endomysium antibody (EMA) screening for celiac disease on the remaining 251 Turner Syndrome patients.  Eight patients (3.2%) showed positive EMA screens. Doctors offered those eight patients endoscopy with duodenal biopsy.
    Seven patients committed to duodenal biopsy, and all seven (2.8%) showed positive histological confirmation for celiac disease. Thus, the doctors reasonably estimate the rate of sub-clinical celiac disease to be between 2.8% and 3.2%. When the existing cases are factored in, the total population shows rates between 4.7% and 5.1%.
    The team conducted human leukocyte antigen (HLA) typing in the existing celiac disease cases and new EMA-positive cases. Ten of those 13 patients submitted to HLA typing. Eight showed positive results for HLA-DQ2, one for HLA-DQ8, while one showed negative results for both HLA-DQ2 and HLA-DQ8.
    The study demonstrates that celiac disease affects adults with Turner Syndrome at rates of up to 5 times those of the general population, and the results are consistent with previous data published in pediatric populations.
    European Journal of Endocrinology. 2009 Feb 10


  • Recent Articles

    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.

    Jefferson Adams
    Celiac.com 04/20/2018 - A digital media company and a label data company are teaming up to help major manufacturers target, reach and convert their desired shoppers based on dietary needs, such as gluten-free diet. The deal could bring synergy in emerging markets such as the gluten-free and allergen-free markets, which represent major growth sectors in the global food industry. 
    Under the deal, personalized digital media company Catalina will be joining forces with Label Insight. Catalina uses consumer purchases data to target shoppers on a personal base, while Label Insight works with major companies like Kellogg, Betty Crocker, and Pepsi to provide insight on food label data to government, retailers, manufacturers and app developers.
    "Brands with very specific product benefits, gluten-free for example, require precise targeting to efficiently reach and convert their desired shoppers,” says Todd Morris, President of Catalina's Go-to-Market organization, adding that “Catalina offers the only purchase-based targeting solution with this capability.” 
    Label Insight’s clients include food and beverage giants such as Unilever, Ben & Jerry's, Lipton and Hellman’s. Label Insight technology has helped the Food and Drug Administration (FDA) build the sector’s very first scientifically accurate database of food ingredients, health attributes and claims.
    Morris says the joint partnership will allow Catalina to “enhance our dataset and further increase our ability to target shoppers who are currently buying - or have shown intent to buy - in these emerging categories,” including gluten-free, allergen-free, and other free-from foods.
    The deal will likely make for easier, more precise targeting of goods to consumers, and thus provide benefits for manufacturers and retailers looking to better serve their retail food customers, especially in specialty areas like gluten-free and allergen-free foods.
    Source:
    fdfworld.com

    Jefferson Adams
    Celiac.com 04/19/2018 - Previous genome and linkage studies indicate the existence of a new disease triggering mechanism that involves amino acid metabolism and nutrient sensing signaling pathways. In an effort to determine if amino acids might play a role in the development of celiac disease, a team of researchers recently set out to investigate if plasma amino acid levels differed among children with celiac disease compared with a control group.
     
    The research team included Åsa Torinsson Naluai, Ladan Saadat Vafa, Audur H. Gudjonsdottir, Henrik Arnell, Lars Browaldh, and Daniel Agardh. They are variously affiliated with the Institute of Biomedicine, Department of Microbiology & Immunology, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden; the Institute of Clinical Sciences, Sahlgrenska Academy at the University of Gothenburg, Gothenburg, Sweden; the Department of Pediatric Gastroenterology, Hepatology and Nutrition, Karolinska University Hospital and Division of Pediatrics, CLINTEC, Karolinska Institute, Stockholm, Sweden; the Department of Clinical Science and Education, Karolinska Institute, Sodersjukhuset, Stockholm, Sweden; the Department of Mathematical Sciences, Chalmers University of Technology, Gothenburg, Sweden; the Diabetes & Celiac Disease Unit, Department of Clinical Sciences, Lund University, Malmö, Sweden; and with the Nathan S Kline Institute in the U.S.A.
    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.
    Compared with the control group, seven out of twenty-three children with celiac disease showed elevated levels of the the following amino acids: tryptophan; taurine; glutamic acid; proline; ornithine; alanine; and methionine.
    The significance of the individual amino acids do not survive multiple correction, however, multivariate analyses of the amino acid profile showed significantly altered amino acid levels in children with celiac disease overall and after correction for age, sex and experimental effects.
    This study shows that amino acids can influence inflammation and may play a role in the development of celiac disease.
    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.
    Now, to be honest, some of those animals in question do perform a genuine service for those who need emotional support dogs, like veterans with PTSD.
    However, many of these animals are not service animals at all. Many of these animals perform no actual service to their owners, and are nothing more than thinly disguised pets. Many lack proper training, and some have caused serious problems for the airlines and for other passengers.
    Now the major airlines are taking note and introducing stringent requirements for service animals.
    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.
    So, 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 and emotional support animals.
    Source:
    cnbc.com