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  • Jefferson Adams
    Jefferson Adams

    By Jefferson Adams •

    U.S. Makes Major Improvements in Diagnosing Celiac Disease

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    Reviewed and edited by a celiac disease expert.

    Despite steady numbers of celiac disease, the number of people following a gluten-free diet without a celiac diagnosis has more than tripled.

    U.S. Makes Major Improvements in Diagnosing Celiac Disease - Photo: CC--JFCherry
    Caption: Photo: CC--JFCherry

    Celiac.com 04/04/2017 - From 2009 to 2014, the number of people with celiac disease in the United States held steady, while the number of undiagnosed individuals fell by about half.

    Mayo Clinic researchers, reviewing information from National Health and Nutrition Examination Surveys, say the increase in diagnosis likely stems from better detection, better celiac disease awareness, and/or possibly from the rising popularity of gluten-free diets.


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    The research team reviewed blood test results of more than 22,000 people over age of six years of age.

    Interestingly, while rates of celiac disease ready held steady, the number of people following a gluten-free diet without a celiac diagnosis more than tripled, to an estimated 3.1 million people.


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  • About Me

    Jefferson Adams

    Jefferson Adams is Celiac.com's senior writer and Digital Content Director. He earned his B.A. and M.F.A. at Arizona State University, and has authored more than 2,500 articles on celiac disease. His coursework includes studies in science, scientific methodology, biology, anatomy, medicine, logic, and advanced research. He previously served as SF Health News Examiner for Examiner.com, and devised health and medical content for Sharecare.com. Jefferson has spoken about celiac disease to the media, including an appearance on the KQED radio show Forum, and is the editor of the book "Cereal Killers" by Scott Adams and Ron Hoggan, Ed.D.

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  • Related Articles

    Jefferson Adams
    Celiac.com 08/15/2016 - On May 3rd, 2016, as part of an ongoing effort to learn more about celiac disease, the U.S. Preventive Services Task Force (USPSTF) released its first-ever draft recommendation statement, and draft evidence review.
    The statement basically says that there just isn't enough evidence to adequately weigh the benefits and harms of celiac disease screening in asymptomatic patients.
    This is an "I" recommendation that does not apply to patients with symptoms of celiac disease such as diarrhea, abdominal pain and unexplained weight loss.
    They basically call for "[m]ore evidence on screening for celiac disease…before the task force can recommend for or against screening people who don't have any signs or symptoms of the condition," said USPSTF member Alex Krist, M.D., M.P.H., in a news release. "In the face of unclear evidence, physicians should use their clinical judgment when deciding whom to screen," Krist added.
    The USPSTF pointed out that their future recommendations for screening patients would benefit from research into:
    The effectiveness of targeted screening in patients at increased risk for celiac disease The accuracy of serological markers in asymptomatic patients, particularly those with risk factors The effect of treatment of celiac disease in asymptomatic patients who have positive blood tests for celiac disease, and The clinical outcomes such as changes in health and quality of life in people who are screened versus people who are not screened
    Read more at: AAFP.ORG.
    Jefferson Adams
    Celiac.com 09/22/2016 - There really hasn't been much study done on diagnostic delays and factors associated with celiac disease, as well as on its potential impact on the course of disease.
    To get a better idea of the issue, a research team recently conducted a large systematic patient survey study among unselected celiac disease patients in Switzerland.
    The research team included SR Vavricka SR, N Vadasz, M Stotz, R Lehmann, D Studerus, T Greuter, P Frei, J Zeitz, M Scharl, B Misselwitz, D Pohl, M Fried, R Tutuian, A Fasano, AM Schoepfer, G Rogler, and L Biedermann. They are variously affiliated with the Division of Gastroenterology and Hepatology at Triemli Hospital Zurich in Zurich, Switzerland, IG Zöliakie, Basel, Switzerland, the Division of Gastroenterology and Hepatology at University Hospital Zurich, Zurich, Switzerland, the Division of Gastroenterology and Hepatology, Gastroenterology Bethanien, Zurich, Switzerland, the Division of Gastroenterology and Hepatology, Spital Tiefenau, Bern, Switzerland, the Pediatric Gastroenterology and Nutrition, MassGeneral Hospital for Children, Boston, USA,and with the Division of Gastroenterology and Hepatology, University Hospital Lausanne - CHUV, Lausanne, Switzerland.
    They broke their study down into patient-associated delays, and doctor-associated delays. They found an average total diagnostic delay of 87/24 months (IQR 5-96), with a range from 0 up to 780 months, which was fairly equally divided between doctor delay and patient delay. Both mean/median total (93.1/24 vs. 60.2/12, p<0.001) and doctors' (41.8/3 vs. 23.9/2, p<0.001) diagnostic delay were significantly higher when comparing female vs. male patients, and interestingly patients' delay was similar even after an irritable bowel syndrome diagnosis.
    Patients with a diagnostic delay shorter than 2 years showed a substantially lower dependence on steroids and/or immunosuppressants, better substitution for any nutritional deficiency, and were more likely to be symptom-free between 6 and 12 months after diagnosis.
    Regular, substantial delays in diagnosing celiac disease, are linked to worse clinical outcomes, and this data shows that such delays are significantly longer in female patients.
    This increased diagnostic delay in women is the fault of doctors, not patients, in part because the delay statistics cannot be explained by a diagnosis of IBS prior to celiac disease diagnosis.
    Source:
     Dig Liver Dis. 2016 Jun 23. pii: S1590-8658(16)30475-3. doi: 10.1016/j.dld.2016.06.016.
    Jefferson Adams
    Celiac.com 12/12/2016 - Studies suggest that celiac disease affects about 0.5% to 1% of the North American population. There is no good screening data based on small intestinal biopsy performed during routine endoscopic evaluation.
    Researcher Hugh James Freeman, MD CM FRCPC FACP, of the Gastroenterology unit in the Department of Medicine at the University of British Columbia in Vancouver, British Columbia, recently set out to review the detection of adult celiac disease using duodenal screening biopsies over a 30-year period.
    Dr. Freeman reviewed data from patients referred between January 1982 and December 2011 for evaluation of gastrointestinal symptoms, requiring elective investigative upper endoscopic evaluation, and who underwent duodenal biopsies to determine whether changes of adult celiac disease were present. He found a total of 9,665 patients, including 4,008 male and 5,657 female, who underwent elective endoscopy and duodenal biopsy.
    Of these, 234, about 2.5%, showed celiac-associated physical changes, including 73 males (1.8%) and 161 females (2.8%). During the first 20 years, the number of biopsy-positive patients in five-year intervals progressively decreased, while over the next 10 years, the number progressively increased.
    Dr Freeman's results indicate that celiac disease is far more common in specialist practice than has been suggested by data from healthy populations using serological screening.
    Because endoscopic duodenal biopsy is so effective in spotting celiac-related damage, Dr. Freeman suggests it be routinely considered in all patients receiving elective endoscopic evaluation.
    Source:
    Can J Gastroenterol. 2013 Jul; 27(7): 405–408. PMCID: PMC3956015
    Jefferson Adams
    Celiac.com 03/14/2017 - Recent studies of adult celiacs have suggested that complete, not just partial, mucosal recovery and healing is possible, but, in many cases, may take longer than is currently understood.
    Recently Dr. Hugh James Freeman of the Department of Medicine, Gastroenterology, University of British Columbia, Vancouver, BC, Canada, conducted a study to assess healing time in celiac patients. In this study, 182 patients (60 males, 122 females) referred for evaluation of symptoms, including diarrhea and weight loss, were selected only if initial biopsies showed characteristic inflammatory changes with severe architectural disturbance.
    All patients were treated with a strict gluten-free diet, and diet compliance was regularly monitored. Up to 90% or more of patients showed a complete mucosal response or healing, many within 6 months. However, most patients required up to 2 years for full healing and recovery to take place in the gut.
    In this evaluation, women in each of 4 different age ranges showed better mucosal response and healing than men, while elderly celiacs had lower rates overall. Such factors should be considered before labeling a patient with "non-responsive" disease.
    However, celiacs who are diagnosed later, start a gluten-free diet later, and who have inflammatory changes with persistent gut damage may be at increased risk for a later small bowel complication, including lymphoma.
    The overall good news here is that full mucosal healing can and does occur in most people with celiac disease. Some people may take longer to heal, but the evidence shows that most do eventually heal.
    Source:
    International Journal of Celiac Disease, 2017, Vol. 5, No. 1, xx. DOI:10.12691/ijcd-5-1-4

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