<<Disclaimer: Verify this information before applying it to your situation.>> Hi listmates. I thought I would share something each of us needs to be aware of no matter how long you have been GF, no matter whether you are officially diagnosed or not...no matter what anyone else tells you about the diet. no matter how well you think you comply. The below study is the first, I believe, to really look at how people are following the GF diet. Sadly, over 56% of the Celiacs showed positive blood work and some intestinal damage indicating dietary noncompliance had occurred to some degree.. most correlated with miseducation or lack of education on the diet. My point is that there is a good possibility that, like this research, 25% of the listmates here are in severe disease condition and most might not even know it. Perhaps this is a wakeup call to those who do not make the effort to verify whether something is GF or not. So, when you give advise on what to eat, when you are told or hear that something was gluten-free or not, keep in mind that we have a responsibility to each other and ourselves to as accurate as possible in being correct. It is not known how partial compliance to the GFdiet helps or hurts in ways besides intestinal cancer. We know that to avoid long term intestinal complications requires 5 years of a fully GF diet. But there are other medical issues...systemic, bone, neurological, mental, dental and many associated autoimmune diseases that some of us have and their source is not fully known. Please be smart ... get smart if you are not. and follow the diet completely and when in doubt, don't eat it. I care about every single one of you here and do not want to see anyone get mislead. Kathy ============================================================== Long-Term Follow-Up of Celiac Adults on Gluten-Free Diet: Prevalence and Correlates of Intestinal Damage Digestion 2002;66(3):178-85 PMID: 12481164 Ciacci C, Cirillo M, Cavallaro R, Mazzacca G. Department of Internal Medicine, Gastrointestinal Unit, Federico II University of Naples, Naples, Italy. Celiac.com 01/12/2003 - Background and Aims: Celiac disease is the most common severe food intolerance in the Western world and is due to gluten ingestion in genetically susceptible children and adults. Intestinal biopsy is the golden standard for evaluation of mucosal damage associated with celiac disease. Gluten-free diet is the key treatment for celiac disease. Data on the long-term control of celiac disease are few and limited to small series of patients. The study reports data on the control of celiac disease and on its correlates in a large cohort of celiac adults during long-term treatment with gluten-free diet. Methods: The study cohort comprises 91 men and 299 women having undergone treatment with a gluten-free diet for at least 2 years and with complete records for visits at the time of diagnosis of celiac disease (baseline). Data collection included gender, age, education, weight, bowel habit, blood hemoglobin, plasma albumin and cholesterol, serum antiendomysium antibodies (EMA), dietary compliance to gluten-free diet (coded as good, low, or very low), and intestinal damage at biopsy (coded as absent, mild, or severe). Results: The duration of follow-up was 6.9 +/- 7.5 years (mean +/- SD, range 2-22 years). At follow-up visit, intestinal damage was absent in 170 patients (43.6%), mild in 127 (32.6%), and severe in 93 (23.8%). At follow-up, intestinal damage was significantly associated with dietary compliance, EMA, and plasma albumin (follow-up value and change value from baseline to follow-up). Baseline education significantly predicted dietary compliance and intestinal damage at follow-up. Conclusions: Celiac disease is often poorly controlled in the majority of patients on long-term treatment with a gluten-free diet as demonstrated by intestinal biopsy. Lack of adherence to strict gluten-free diet is the main reason of poorly controlled disease in adults. Laboratory and clinical information have a high positive predictive value and low negative predictive value for intestinal damage on long-term treatment. Dietary compliance as assessed by interview is the best marker of celiac disease control due to low cost, noninvasivity, and strong correlation with intestinal damage. Copyright 2002 S. Karger AG, Basel (PS:If each of us put some effort into getting the labeling laws changed to identify gluten content in foods most questions would be answered. If you are sincerely interested in helping in that cause, contact Mandy assistant to Cynthia Kupper, RD, CD Executive Director Gluten Intolerance Group at [log in to unmask] for further info.) ============================================================ Posted with permission Dear Mrs McBride Thank you for your mail dated January 14, 2003 in which you request permission to post the abstract from article Ciacci C. et al.:Digestion 2002;66(3):178-85 to the Celiac support e-mail list. Permission is given herewith under the condition that the original source and S. Karger AG, Basel are mentioned. Yours sincerely, Carmen Scaglia Rights and Permissions S. Karger AG Medical and Scientific Publishers Allschwilerstrasse 10 CH - 4009 Basel Tel +41 61 306 14 75 Fax +41 61 306 12 34 E-Mail [log in to unmask] *Support summarization of posts, reply to the SENDER not the CELIAC List*