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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 Celiac.com's FREE weekly eNewsletter   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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About luluo

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  1. Thank you all. I was planning to make the house almost 100% gluten free. I guess I just needed some extra support in that area. My husband kind of scoffs at the idea. He is supportive but change is hard for him. It is a pain to fix everything separate and have separate toasters, etc. Over the summer I will slowly switch the house to be mostly gluten free. He probably won't even realize. lol. Thank you again.
  2. I am gluten free based on an elimination diet done back in 2004. I never had a blood test because I had been gluten free for a while but my symptoms disappeared when I went gluten free. I never had further testing because I didn't want to load on gluten to have them done since I am doing well. A few years back I did get a genetic test done through my doctor and I have the DQ2 gene. I recently had my children tested. The genetic tests were done through Enterolab and the IGA tests were done through their doctor. They both have tested positive for two genes. Either DQ2/DQ2 or DQ2/DQ8 (not sure which my husband carries as he refuses to be tested). They do not have the HLA-DQB1. Their Transglutimate IGA tests were negative and were <1.2 (standard <4.0). Their Celiac Disease Antibodies were 110 and 46 (standard 29-256). Based on this information would you go ahead and switch them to gluten-free? They have no bowel or digestive issues, they are not vitamin deficient, and do not have cognitive issues. Thanks for any insight you can provide.
  3. Extreme fatigue, all over chronic pain since I was in my teens, migrianes, numbness in the extremeties, breathlessness, palpitations, extreme feelings of hot and cold, etc., that have all gotten much worse in the last few years to the point where my life was being greatly impacted. Yes, my rheumatologist was thinking Lupus or RA as well as a few other things but all tests came back okay. One thing that was certain was that we discovered I had a congenital heart defect (undetected for 34 years). It was fixed 2.5 ago and we are all hopeful that some or many of my symptoms will resolve as I heal. Since discovery of the heart defect, my rheumy was thinking fibro (or fibro like symptoms) brought on by the stress my body was under due to the heart defect. (I had a 1cm hole between the right and left atrium and one of the pulmonary veins was going to the right chamber instead of the left.) My rheumy she says she won't rule anything out and we will just take things one day at a time. In the meantime, I had had this genetic test for celiac done back in April and just got the results back and was surprised by the results. Though after reading the posts here, my results weren't all that surprising. What led me to go gluten-free in 2004 was I was having lots of GI problems, lost a lot of weight in a short amount of time and after tests, colonoscopy, and a dairy elimination, I did a gluten elimination and got better very quickly. I've been gluten-free ever since. Really, I have had so much going on medically, over the last couple of years especially, that I'm just trying to piece the puzzle together to improve my quality of life. Thanks so much for responding. I appreciate the help.
  4. Thank you both for the explanations. I've gotten better info from you than from the GI and staff. I'm very irritated that he made it seem that this genetic test would give me the answers I was looking for. Should have known better. The reason I was looking for a firm dx of celiac was to aid my rheumatologist in my treatment. I have a positive ana and we were hoping to rule in celiac as a cause of that or rule it out. Not that it makes much difference except that if you are labeled with one condition, the docs tend to use that as an explanation for everything and rule out other causes. Thanks so much for the quick responses. I think I'm going to skip the upper endoscopy. I don't want to load myself up on gluten again. Not worth it to me. I'll just stay gluten-free and hopefully that will be good enough for my rheumatologist.
  5. I have been gluten-free since 2004. Been doing well but have had health problems recently that have led to me want to have a firm diagnosis if celiac disease if possible. Blood tests were negative, but I am gluten-free so I expected that. So I paid big bucks to have a HLA DQ test done. GI Doc said that this should give us a definitive answer. I spoke with the nurse practitioner today and she told me that the results were inconclusive because I tested positive for one gene but not the other and in order to be considered celiac disease I have to have both genes be positive but to be considered negative I need both to be negative. I am really disappointed that this so-called "definitive test" is not definitive at all. Has anyone else had this happen? Any insight? GI now wants to do an upper endoscopy. I believe I'd have to get back on gluten for this test, correct? The Nurse Practitioner said that I wouldn't but I dont see how that would work. Also, aren't there lots of false negatives with the upper endoscopy. Not sure it is worth going through all that.
  6. In 2004, it was determined that I need to avoid gluten through an elimination diet suggested by my GI. I have never had any further tests done so I am not familiar with them. My son, 18 months, just had a blood test done by his pediatrician for Celiac due to persistent loose stools. The test came back "between positive and negative" and he needs further evaluation by a GI. Back when I was trying to figure out what was going on with me I read that negative blood tests for Celiac are unreliable, but that a positive test is usually accurate. What does neither positive nor negative indicate? Just that it is inconclusive? I know there are worse things, but I really hoped that my kids wouldn't have to deal with being Celiac and I am of course worried. For parents with Celiac kids, what kind of testing did they have to go through? Any at all or just an elimination diet? Thanks.