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  • Jefferson Adams
    Jefferson Adams

    Poor Medical Follow-up Means Worse Disease Control for Kids with Celiac

    Celiac.com 01/05/2015 - Doctors recommend medical follow-up of celiac disease patients for gluten-free diet (GFD) adherence monitoring and complication detection. But, what happens to celiac kids who don’t get good medical follow-up?

    A team of researchers recently tried to figure out how the LTFU kids fared health-wise compared to kids who did receive follow-up, and what barriers the LTFU kids might face in successfully following a gluten-free diet.

    Photo: CC--Sam NasimThe research team included L. Barnea, Y. Mozer-Glassberg, I. Hojsak, C. Hartman, and R. Shamir. They are variously affiliated with the Institute of Gastroenterology, Nutrition and Liver Diseases, Schneider Children's Medical Center of Israel, Petach Tikva and the Sackler Faculty of Medicine at Tel-Aviv University in Tel Aviv, Israel.

    They had previously shown that 35% of children with celiac disease were lost to follow-up (LTFU), that is, they did not receive follow-up care for their celiac disease. The study team used a telephone questionnaire to assess 50 LTFU patients regarding frequency of follow-up, serology testing, and adherence to GFD measured by validated Biagi score. They had fifty two regular follow-up patients serve as a control group.

    The results showed that the LTFU patients had poor adherence to GFD, with an average Biagi score of 2.0 ± 1.4, compared to control scores of 3.0 ± 1.0 (p < 0.001).

    Only 22% of LTFU performed periodic celiac serology testing compared to 82% of the control group (p < 0.001).

    Fifty percent of the LTFU kids had higher prevalence of positive celiac serology tests, compared to 25% of controls, (p = 0.01).

    Just 24% of LTFU kids were National Celiac Association members, compared with 44% of control kids (p = 0.05).

    Regression analysis showed positive relationships between LTFU and poor adherence to GFD (R2 = 0.26737, p = 0.001), older age at diagnosis (R2 = 0.30046, p = 0.03), and non-membership in a celiac association (R2 = 0.18591, p = 0.0001).

    So, when the dust settled, the study showed that children LTFU were more likely to not follow a strictly gluten-free diet, and to have positive blood tests for anti-gluten antibodies. Accordingly, the team recommends that risk factors for LFTU be identified and addressed in order to improve patient care.

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    I realize this study only looked at antibodies but I wanted to say how important follow-up up is for other reasons. Within my family of six, four of us have celiac disease. My kids always have good blood work as far as antibodies. However, my oldest at 9, now 5+ years gluten-free still has issues with vitamin deficiencies. He had a bone scan that showed low bone density. He also has other symptoms because of deficiencies. It's important to keep on top of not only your diet but follow-up care. (I have found my kids' doctors to be great; my experience is not so much - I was told to go on a gluten-free diet and that's it).

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  • About Me

    Jefferson Adams earned his B.A. and M.F.A. at Arizona State University, and has authored more than 2,000 articles on celiac disease. His coursework includes studies in biology, anatomy, medicine, science, and advanced research, and scientific methods. He previously served as 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.

  • Related Articles

    Jefferson Adams
    Celiac.com 06/25/2010 - Recent scientific evidence suggests that gut microbiota may play a significant role in celiac disease. To further examine the role of gut microbiota in celiac disease, an Italian research team conducted a study of children with celiac disease.
    The research team included Serena Schippa, Valerio Iebba, Maria Barbato, Giovanni di Nardo,Valentina Totino, Monica Proietti Checchi, Catia Longhi, Giulia Maiella, Salvatore Cucchiara, Maria Pia Conte.
    To gain a better understanding of any role played by dominant duodenal microbiota, the team analyzed the mucosa-associated microbiota of 20 children with celiac disease, both before and after treatment with a gluten-free diet. The compared the results with a group of 10 control subjects.
    The team extracted total DNA from duodenal biopsies and amplification products of 16S ribosomal DNA. They then compared the results using temporal temperature gradient gel electrophoresis (TTGE). They assessed TTGE profiles by statistical multivariate analysis.
    They found that, on average, patients with active celiac disease showed a significantly higher number of bands in TTGE profiles (P<0.0001) (n.b. 16.7 +/- 0.7), compared to patients with treated, or inactive disease (n.b. 13.2 +/- 0.8) compared to control subjects (n.b. 3.7 +/- 1.3).
    Average inter-individual similarity indices were 54.9% +/- 14.9% for active disease patients, 55.6% +/- 15.7% for treated (inactive) celiac disease, and 21.8% +/- 30.16% for controls. Similarity index between celiac children before and after treatment with gluten-free diet was 63.9% +/- 15.8%.
    Variation in microbiota biodiversity between active and remission state was P=0.000224. Between active celiac disease and control subjects, variation was  P<0.001.
    Patients with celiac disease showed higher populations of Bacteroides vulgatus and Escherichia coli, compared to control subjects (P<0.0001).
    Overall, the results demonstrate a peculiar microbial TTGE array, coupled with substantially greater biodiversity of duodenal mucosa in children with celiac disease.
    Further study is needed to assess any possible pathophysiological role for these microbial differences.
    Source: BMC Microbiology 2010, 10:175


    Destiny Stone
    Celiac.com 07/26/2010 - There is very little information currently available regarding the effects of follow up strategies for those celiac patients that follow a gluten-free diet. Therefore, it was the aim of of researchers in Italy to determine the t-transglutaminase antibodies (t-TG) in celiac disease patients while they were enrolled in a community based follow-up program over a 5-year period.
    Most patients that are diagnosed with celiac disease are told they need to adhere to a gluten-free diet for the remainder of their lives, and then they are usually left to figure it out on their own. However, it is recommended that celiac patients have regularly scheduled  follow-ups after diagnosis for early detection of celiac related complications, and to reinforce the importance of adhering strictly to a gluten-free diet.
    In the year 2000, a community based “celiac disease-Watch” follow-up program was designed by the Local Health Authority of the Brescia Province in Northern Italy. The hope for the celiac disease-Watch program was to increase awareness of celiac disease  and to standardize diagnostic criteria  for celiac disease among health care professionals.
    Beginning in January 2003, all celiac patients that reside in the Province of Brescia have been enrolled in an ongoing celiac disease-Watch follow-up program. To encourage celiac patients to enroll in the follow-up program, the Italian government gives patients a bonus to subsidize their gluten-free diets, and all patients are required to contact the Local Health Authority every year to renew their bonuses.
    Furthermore, the celiac disease-Watch program requires all patients to have their serum tested once a year for detection of t-TG antibodies. Testing for the antibodies begins 12-16 months after a celiac diagnosis. The testing is free of charge to the patients and they can choose any laboratory they like. Results from the t-TG testing is reported to the Local Health Authority, and it is a requirement to continue to receive subsidization, although patients continue to receive subsidization regardless of their t-TG results.
    Those that test positive for t-TG antibodies during their annual follow up, are referred back to the clinic where they were initially diagnosed. At the clinic they receive a clinical evaluation, and dietary counseling. While those that have a clean bill of health are scheduled for follow up appointments every 3 years.
    Through this study, researchers found that  as a result of the celiac disease-watch program, celiac patients with negative t-TG antibodies advanced from 83% to 93%. Respectively, using mathematical modelling to t-TG conversion rates observed in the study, the projected population of t-TG negative patients increased in population from 90% to 95% over the 5 year period.
    From this study, researchers were able to determine with confidence that without a follow-up strategy in place, patients with celiac disease will be inconsistent with adhering to a gluten-free diet. It is therefore strongly emphasized that regular serological and clinical follow-ups are a sustainable strategy to promote dedicated compliance to a gluten-free diet.
    Source:

    Digestive and Liver Disease doi:10.1016/j.dld.2010.05.009

    Jefferson Adams
    Celiac.com 04/22/2014 - Blood tests are highly valuable for diagnosing celiac disease. However, their role in gauging mucosal healing in celiac children who have adopted gluten-free diets is unclear.
    A team of researchers recently set out to compare the performance of antibody tests in predicting small-intestinal mucosal status in diagnosis and follow-up of pediatric celiac disease.
    The research team included Edith Vécsei, Stephanie Steinwendner, Hubert Kogler, Albina Innerhofer, Karin Hammer, Oskar A Haas, Gabriele Amann, Andreas Chott, Harald Vogelsang, Regine Schoenlechner, Wolfgang Huf, and Andreas Vécsei.
    They are variously affiliated with the Clinical Department of Pathology and the Department of Internal Medicine III of the Division for Gastroenterology and Hepatology, the Center for Medical Physics and Biomedical Engineering, the Department of Pediatrics and Pediatric Gastroenterology of St. Anna Children's Hospital, all at Medical University Vienna, and with the Institute of Pathology and Microbiology, Wilhelminenspital in Vienna, and with the Department of Food Science and Technology, Institute of Food Technology, University of Natural Resources and Life Sciences in Vienna, Austria.
    The team conducted a prospective cohort study at a tertiary-care center, where 148 children received biopsies either for symptoms ± positive celiac disease antibodies (group A; n = 95) or following up celiac disease diagnosed ≥ 1 year before study enrollment (group B; n = 53).
    Using biopsy (Marsh ≥ 2) as the criterion standard, they calculated areas under ROC curves (AUCs) and likelihood-ratios to gauge the performance of antibody tests against tissue transglutaminase (TG2), deamidated gliadin peptide (DGP) and endomysium (EMA).
    They found that AUC values were higher when tests were used for celiac disease diagnosis compared with follow-up: 1 vs. 0.86 (P = 0.100) for TG2-IgA, 0.85 vs. 0.74 (P = 0.421) for TG2-IgG, 0.97 vs. 0.61 (P = 0.004) for DPG-IgA, and 0.99 vs. 0.88 (P = 0.053) for DPG-IgG, respectively.
    Empirical power was 85% for the DPG-IgA comparison, and on average 33% (range 13–43) for the non-significant comparisons. A total of 88.7% of group B children showed mucosal healing, at an average of 2.2 years after primary diagnosis.
    Only the negative likelihood-ratio of EMA was low enough (0.097) to effectively rule out persistent mucosal injury. However, out of 12 EMA-positive children with mucosal healing, 9 subsequently tested EMA-negative.
    Among the celiac disease antibodies examined, negative EMA most reliably predict mucosal healing. In general, however, antibody tests, especially DPG-IgA, are of limited value in predicting the mucosal status in the early years after celiac diagnosis, though they may do better over a longer time.
    Source:
    BMC Gastroenterology 2014, 14:28. doi:10.1186/1471-230X-14-28

    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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    When I spoke to the owner a few years back, she told me people are not allowed to bring thier lunches into the facility.  Here is a link to their gluten-free info   https://canyonglutenfree.com/uploads/Canyon-Bakehouse-Mission-&-Values.pdf  
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