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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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    LONG-TERM HISTOLOGICAL FOLLOW-UP OF PEOPLE WITH CELIAC DISEASE


    Jefferson Adams

    Celiac.com 07/28/2010 - Most people with celiac disease keep themselves healthy by following a gluten free diet. More and more, doctors are recognizing the importance of confirming gut recovery through follow-up evaluation. Still, among clinicians, there is currently no standard for follow-up confirmation of gut healing in celiac disease treatment.


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    Many guidelines recommend an initial follow-up biopsy at 4-6 months after the patient begins a gluten-free diet. However, the use of biopsy to confirm gut healing is still controversial, as it can yield enormously variable results.

    A group of researchers recently set out to establish the amount of time it takes for full gut recovery in patients with celiac disease.

    The research team was made up of J.M. Hutchinson, N.P. West, G.G. Robins and P.D. Howdle. They are variously affiliated with the Sections of Medicine, Surgery and Anesthesia, the Section of Pathology & Tumour Biology at the Leeds Institute of Molecular Medicine in Leeds, and with the Department of Gastroenterology of the York Foundation Hospitals Trust, York, UK.

    The team enrolled patients who attended a specialty celiac disease clinic prior to March 2009, and recorded various clinicopathological information into a database.

    The team reviewed histopathology reports for all duodenal biopsies, and scored each biopsy for histopathology based on a modified Marsh grade.

    The team indexed and performed at least one biopsy on two hundred and eighty-four patients.

    The team found marked gut improvement in two-hundred and twenty-seven patients (80%), and a complete return to normal histology in 100 patients (35%). Average recovery time was 1.9 years, with a range of 1.0–4.8 years.

    Patients with less serious celiac disease at the start showed a better overall response (r = 0.281, P < 0.0001), while older patients recovered more quickly (r = –0.200, P = 0.001).

    Patients who best followed a gluten-free diet showed the best biopsy scores (r = –0.134, P = 0.040) and the greatest degree of histological recovery (r = 0.161, P = 0.014).

    Current guidelines for treatment of celiac disease recommend timing repeat biopsy 4-6 months after commencing a gluten free diet.

    These results shows histological recovery generally takes longer than traditionally thought, and that doctors looking to conduct such follow-ups might do well to factor in the patient’s age at diagnosis, the initial disease score, as well as the level of compliance with a gluten free diet.

    Source:


    Image Caption: QJM celiac study
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    Guest Ian geary

    Posted

    This is rather superficial when dealing with such a complex subject. In the UK there is little opportunity to get endoscopy by request at 4- 6 months. Nor would anyone want one!

    There is follow up but it is more 'general'- from my experience.

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    Guest RD Schrock Jr MD

    Posted

    If I had been asked to undergo a follow-up biopsy, I would have declined respectfully, because I felt so much better on a gluten-free diet and had no doubt about intestinal recovery on that basis. I was no longer lactose intolerant and I was gaining weight. At age 61 the risk of repeat endoscopy outweighed the benefit. My enzymes were repeated and returned to normal.

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    Guest Sarah

    Posted

    I think this article is great. People are so scared of biopsies, when they are fairly routine, safe, and painless (if you choose to be sedated). for the vast majority of adult patients. I've had 2 without any sedation at all, only anesthetic spray at the back of the throat to reduce the gag reflex. Over in 4 minutes or less, no recovery time with no sedation. Walked out of the day surgery room feeling fine. It's important to have a follow up biopsy as it seems like a strict gluten-free diet alone does not "reverse" Celiac in all Celiacs, especially those like me with "serious" disease. These people may also need steroids, immune modulating drugs, and IV nutrition. You can have normal bloodwork and still have significant intestinal damage. Some complications (I.e. osteoporosis) may not show up until much later, even if you're not as sick or symptomatic.

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    Good general feedback which may seem overwhelming to see 4.8 yr but to know 'celiacs' is good.

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    admin

    Troncone R, Greco L, Mayer M, Mazzarella G, et. al.
    Gastroenterology, 1996; 111: 318-324
    The final paragraph says:
    In conclusion, our data show that approximately half of the siblings of patients with celiac disease show signs of sensitization to gluten as they mount an inflammatory local response to rectal gluten challenge. The genetic background and the clinical meaning of such gluten sensitivity need to be established. Further studies, particularly at the jejunal level, are necessary before deciding if any action is to be taken in this subset of first-degree relatives.

    Jefferson Adams
    Celiac.com 06/30/2008 - The results of a Hungarian study published recently in the June issue of Pediatrics suggest that people with untreated celiac disease show abnormal resistance to the hepatitis B (HBV) vaccine, while celiac patients on a gluten-free diet show a near normal response to the vaccine.
    A team of doctors led by Dr. Eva Nemes, at the University of Debrecen, administered 2 to 3 doses of recombinant HBV vaccine to 128 patients with celiac disease and an age matched control group of 113 non-celiac patients within a 6-month period. Twenty-two of the celiac patients were following a gluten-free diet when they received the vaccine.
    One month after the last HBV vaccination, the team took blood samples to look for anti-HBV antibodies. The group of 22 patients who received the vaccination while on a gluten-free diet had a sero-conversion rate of 95.5%, which means that more than 9 out of 10 patients developed the desired resistance to hepatitis B.
    The other 106 patients with celiac disease, as well as the control group, were vaccinated at approximately 14 years of age, and their immune response was evaluated by measuring anti-HBV titers about two years later. Of the 106 subjects with celiac disease, seventy had been diagnosed and were maintaining a strict gluten-free diet when they were vaccinated, twenty-seven were undiagnosed and untreated, and nine were diagnosed, but not following a gluten-free diet.
    The seventy subjects with celiac disease that was diagnosed and treated showed a sero-conversion rate of 61.4%. Given the size of the study samples, that’s not significantly different from the 75.2% sero-conversion rate for the control group.
    The big difference arose in those subjects with undiagnosed celiac disease, who showed a response rate of just below 26%, which was substantially lower than the control group and the treated celiac patients. The nine patients with active celiac disease who were not faithfully following a gluten-free diet showed a response rate of 44.4%. The thirty-seven subjects with celiac disease who had failed to respond to the vaccine were placed on a gluten-free diet and given a follow-up vaccine. One month later 36 of them (over 97%) showed a positive response to the vaccine.
    The team concluded that the positive response to the vaccine by celiac patients who were following a gluten-free diet, and the high resistance shown by subjects with undiagnosed celiac disease, and those not following a gluten-free diet, indicates that active celiac disease may play a major role in a failure to respond to the vaccine.
    The team recommends that newly diagnosed patients be checked for resistance to the HBV vaccine, and that those showing resistance be placed on a gluten-free diet before receiving a follow-up dose. They did not go so far as to suggest that those showing resistance to the HBV vaccine be screened for celiac disease, but that would not seem unreasonable, given their results.
    Pediatrics 2008; 121:e1570-e1576.


    Jefferson Adams
    Celiac.com 04/04/2012 - After numerous studies over several decades showing higher mortality rates in people with celiac disease, including a comprehensive study in 2009, published in Gastroenterology, news of a recent UK study, finding mortality rates for people with untreated celiac disease that are similar to the general population, has raised a few eyebrows.
    With diverse study data fueling differing opinions, questions regarding long-term mortality in people with celiac disease will likely take time to resolve.
    In the meantime, a review of scientific literature brought up this small 2007 study. In it, a research team compared long-term mortality rates in people diagnosed with celiac disease as children with rates for those diagnosed as adults. They wanted to find out how those rates might differ and if the rates might be related to the disease and the length of gluten exposure before diagnosis.
    To find an answer, the team gathered data for 285 children and 340 adults diagnosed with celiac disease. They continued to gather data for each until the end of 2004, excepting those who failed to follow up for other reasons.
    From their data, the team calculated standardized mortality ratios (SMRs) for the period starting five years after patient diagnosis. They found that adults diagnosed with celiac disease had 38% higher mortality rates (SMR 1.38, 95% CI 1.16-1.63). Children on the other hand, faced rates three-times higher (SMR 3.32, 95% CI 2.05-5.07).
    This excess mortality in children was mainly due to higher rates of death from accidents, suicide, and violence (seven deaths, SMR 3.22, 95% CI 1.29-6.63), cancer (five deaths, SMR 3.72, 95% CI 1.21-8.67), and cerebrovascular disease (two deaths, SMR 10.03, 95% CI 1.21-36.00).
    The 2007 study found that adults with celiac disease face a modest increase in mortality rates over the long-term, but that mortality rates for those diagnosed with celiac disease as children were three-times higher starting five years after diagnosis.
    The team proposed that the increased mortality in children from external causes may be due to behavioral changes associated with living with life-long celiac disease and its treatment.
    Stay tuned for further developments regarding mortality rates in people with celaic disease.
    Source:

    The American Journal of Gastroenterology. 2007;102(4):864-870.

    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:
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    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.

  • Recent Articles

    Jefferson Adams
    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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    Read the full study in Science.

    Tammy Rhodes
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    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.
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    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.
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