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      Frequently Asked Questions About Celiac Disease   09/30/2015

      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 FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Thanks For The Welcome
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1 post in this topic

I would like to thank everyone for the welcome to the forum. I haven't posted lately, because I could get on the boards-looks like I finally have that problem cleared up.

My Son won't be tested for Celiac too. He says he doesn't want to know, and doesn't want to change his lifestyle. But, I know he carries the gene, because his 7 year old Daughter has tested postitive. So, being a Mother I will just watch him for any signs. But, I hate the fact he will develop Arthritis, and he is so sports minded. Hopefully, he will change his mind.

My Daughter has her endo on the 26th of this month. Then she will be able to start the gluten-free diet. She is so thrilled-Not! Her 2 boys will be tested later this month. Her oldest son has OCD, and I am wondering if the gluten-free diet would be of help for him?

Guess I better get off here-we are having a bad storm in Cedar Rapids right now.

Talk Later

T-Bell

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    • Celiac.com: Celiac Disease Screening An Uncertainty
      http://www.uspreventiveservicestaskforce.org/Page/Document/UpdateSummaryDraft/celiac-disease-screening?ds=1&s=celiac This is a link to the USPSTF page on celiac screening.  It says the recommendation is still in draft until 30- May-16. ---------------------------------------------------------------------------------------------------------------------------- " Draft Recommendation Statement Importance Celiac disease is a multisystem autoimmune disorder in genetically predisposed adults and children that is triggered by dietary gluten. Ingestion of gluten by persons with celiac disease can cause immune-mediated inflammatory damage to the small intestine, which can cause gastrointestinal and nongastrointestinal illness. The clinical presentation, severity of symptoms, and natural history of the disease varies, and includes asymptomatic (or “silent”) celiac disease. In studies of U.S. populations, the estimated prevalence of celiac disease among adults ranges from 0.40% to 0.95%.1 Prevalence is higher than average among non-Hispanic whites, persons with a family history of celiac disease, and those with other autoimmune conditions. Detection The USPSTF found inadequate evidence regarding the accuracy of screening tests for celiac disease in asymptomatic populations. Benefits of Early Detection and Intervention or Treatment The USPSTF found inadequate evidence on the effectiveness of screening for celiac disease in asymptomatic adults, adolescents, and children with regard to morbidity, mortality, or quality of life. The USPSTF also found inadequate evidence on the effectiveness of targeted screening in persons who are at increased risk for celiac disease (e.g., persons with family history or other risk factors). The USPSTF found inadequate evidence on the effectiveness of treatment of screen-detected, asymptomatic celiac disease to improve morbidity, mortality, or quality of life compared to no treatment or treatment initiated after clinical diagnosis. Harms of Early Detection and Intervention or Treatment The USPSTF found inadequate evidence on the harms of screening for or treatment of celiac disease. USPSTF Assessment The USPSTF concludes that the current evidence is insufficient to assess the balance of benefits and harms of screening for celiac disease in asymptomatic persons. Evidence is lacking, and the balance of benefits and harms cannot be determined. .... Potential Harms of Screening or Treatment The USPSTF found no trials or controlled observational studies on the harms of screening for celiac disease in asymptomatic populations. Potential harms of screening in asymptomatic populations include false-positive, inconclusive, or unnecessary serologic tests and biopsies, with possible anxiety or complications from testing. However, the USPSTF found no studies on these harms. *** Some persons with biopsy-confirmed celiac disease may never develop symptoms; therefore, overdiagnosis is also a potential concern. ***                                              One small fair-quality trial of treatment with a gluten-free diet16 reported no withdrawals due to major symptoms or complications. The USPSTF found no other studies on the harms of treatment with a gluten-free versus nongluten-free diet in persons with screen-detected celiac disease.  " Send Us Your Comments In an effort to maintain a high level of transparency in our methods, we open our draft Recommendation Statements to a public comment period before we publish the final version. Leave a Comment >> ... article continues... this is  a link to the comment form: http://www.uspreventiveservicestaskforce.org/Comment/Collect/Index/draft-recommendation-statement150/celiac-disease-screening ------------------------------------------------------------------------------------------------------------------------- I don't agree with the italicized quote myself.  It seems they think if you have silent celiac with no symptoms it's ok to keep damaging your body by eating gluten.  that just doesn't make sense to me. The comment period seems to be open still, and they have a comment option on that page a the bottom.  Since it seems the people doing the research aren't totally aware of the issues related to celiac disease and it's effects, maybe we should leave them some comments.  Right now they are saying they are not making any recommendation regarding celiac disease screening due to not having enough evidence of a benefit.  That's not an issue I don't think, except in the case of first degree relatives.  First degree relatives should be screened as they have a much higher chance of having celiac or developing it.  The current draft leaves testing relatives up to the individual doctor.  I  know my doctor won't test my 2 brothers even though I have celiac disease.   That isn't right IMHO. It seems like they should seek input from experts in the field, like Dr Fassano and the U of Chicago celiac center etc. It's a draft recommendation right now though, so they are seeking public comments.      
    • New Celiac Doctor - Atlanta/Duluth, GA
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    • New Celiac Doctor - Atlanta/Duluth, GA
      Hello! I have Celiac Disease (confirmed by blood tests and endoscopy done in 2013) and was going to a doctor at Atlanta Gastroenterology Associates until the end of last year (2015) when they started charging me for things that happened in 2013 - two years late. I had since changed insurance and was forced to pay out of pocket for the charges or be sent to collections. All in all, I loved my doctor there, but was very unhappy with the way the billing was managed.  So, I found a new doctor and have seen her once. I like her very much so far, but have recently moved and my home is so far from her office it often takes me 1-2 hours to get there with Atlanta traffic. (Her office is at Emory St. Joseph's hospital.) I should say one of the reasons we moved to Duluth was to get away from Atlanta traffic. I don't want to change practices, but I'm considering it. Does anyone out there live in North Atlanta? Alpharetta, Lawrenceville, Duluth, Suwanee? And have a doctor in the area they would recommend that is NOT associated with Atlanta Gastroenterology Associates? I would rather drive 5 hours to see a doctor than go back to that group, no matter how good the doctors are! Any recommendations are welcome!
    • Sjogren's, Celiac, or both?
      Welcome!  Unfortunately, you would have to go back on gluten to get tested (8 to 12 weeks for the blood test and 2 to 4 weeks for the endoscopy).  Here are the tests: http://www.cureceliacdisease.org/screening/ I am sorry that your doctor is so mis-informed! There are over 300 symptoms attributed to celiac disease and some celiacs are considered "silent" with no symptoms at all!  I personally was anemic and had no tummy issues that I was aware of at the time of my diagnosis.   There are other forum members who have Sjogren's who might have some good advice (@Gemini).   I wish you well!  
    • Sjogren's, Celiac, or both?
      Hi! This is my first post here. I'm wondering if anyone else has had a similar experience. I'm in the diagnostic process for Sjogren's, which my rheumatologist is very sure that I have even though my dryness symptoms are very mild. (I am positive for SSA, the autoantibody associated with Sjogren's.)  The symptoms I initially went to my GP with are: fatigue, hair loss, irregular menstrual cycle (very unusual for me), headaches (migraines, almost daily), elevated temperature, weight loss My GP did not do the blood test for Celiac disease. She opted not to because when she asked me if I had loose stool, I said "No, actually, I've been constipated every day for the last 10 years." She said, "Ok, no Celiac then."  ???????? During the diagnostic process, I also lost a pregnancy.  When I eliminated gluten because of recommendations from the Sjogren's Foundation website, almost all of my symptoms disappeared. I still have the hair loss, but no headaches, fatigue is better, cycle is regular, and I'm back to my normal weight. Even my temperature is closer to my norm. I feel like an entirely new person. I still sometimes have mild dryness symptoms but nothing that would have prompted me to go to the doctor without the other symptoms. Should I make an appointment with my rheumatologist and try to get tested for Celiac disease? Has anyone had a similar experience? And how hard do you think it will be to get tested? (Like most doctors I've worked with, my rheumatologist likes to be the one who makes the suggestions.) Thanks for any input! Kristen
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