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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? - 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 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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Well I promised I would post regarding my expedition to Children's Hospital in Los Angeles. I have very little positive to say about the office staff so I will keep my mouth shut, but Dr. Pietzak was wonderful once we were able to actually get in front of her. She was a wealth of information, took the time to listen to my daughter's very extensive medical history, all the while my two year old was playing devil child and bouncing off the walls(not the child with celiac disease, she was very well behaved, sat quietly and wolfed down a bag of gluten free pretzels). Anyway, given my daughter's off the charts positives on all the blood tests and her amazing reaction to being on a gluten free diet for over a month Dr. Pietzak felt comfortable officially diagnosing her with celiac disease. We need to get one more blood test to test nutrition levels but we are forgoing the biopsy. So, for anyone in the LA area that is looking for a specialist, I highly recommend Dr. Pietzak, but you need to be pretty tough and persistent to get an appointment in a timely manner. I look forward to learning as much as possible, this forum has been a wealth of information already.

Take care,

deb, mom to a newly diagnosed 7 year old.

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    • Cheetah, We all have to make our own health decisions based on our individual circumstances.  There is not any “one size fits all” approach.  ☹️In your daughter’s case, she was asymptomatic.  I also would find it hard to believe that she had celiac disease despite confirmed biopsies and antibodies tests.  I get the denial.  I just had anemia that was disguised by a genetic anemia.  I was shocked at the suggestion of celiac disease.  My hubby had been gluten free for 12 and I knew exactly what the treatment meant — gluten free for life.  A total game changer.   Because we have bought our health insurance for over 20 years, we have lived through the times that I was uninsurable due to my Hashimoto’s, Rosacea and toe nail fungus (yes, that is right).    I never went without, but I could not freely jump from plan  to plan.  My premiums were higher than my hubby’s.  So, we worry that health insurance could change and I would be uninsurable again.  (Did I mention that our annual premium is $24,000?) However, the genetic test can be invaluable but is mostly used to help rule out celiac disease.  There are other genes associated, but they have not been studied well.   “So far, scientists have identified over a dozen possible non-H.L.A. genes that may be associated with celiac disease, but whether these genes actually play a role remains to be seen.”  (Sheila Crowe, now head of the American GI Association).   https://consults.blogs.nytimes.com/2010/01/13/genetic-testing-for-celiac-disease/ The antibodies test, in conjunction with the biopsies is the best means of diagnosing celiac disease to date.  The blood test is the least reliable as there are false positives (rare).    It is hard to dispute villi damage.  Too bad your Aunt did not get a biopsy, but understandably, an endoscopy can be costly if you lack insurance and there are many other reasons, so many are forced to forgo this procedure.   https://www.ueg.eu/education/latest-news/article/article/mistakes-in-coeliac-disease-diagnosis-and-how-to-avoid-them/   It is unfortunate that we must weight the risks and benefits of everything.    
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    • I know this thread is eight years old, but I'm bringing it back because ingredients have (very likely) changed since 2009. Jimmy Dean breakfast bowls still don't list gluten, wheat, etc. But they did give my mom and I terrible stomachaches. I know the scientific method calls for repeat experiments but we don't really feel like it. However, I will say we usually stick to a strict gluten-free diet (only eat if it states gluten-free or if there's no way it contains gluten; fruit, veggies, etc) So it's extremely unlikely it was anything else. These were just a risk we took because there's so few explicitly gluten-free quick meals- we both work long-hour jobs and have school so quick meals are very helpful. TL;DR: They are very likely NOT gluten-free. Just because it doesn't say gluten/wheat in the ingredients doesn't mean it's not present. Call me paranoid, but I feel it's a good rule.
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