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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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

CeliacMommaX2

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  1. Boston- dedicated gluten-free restaurants?

    Thanks for all the great info! Great to know about the Whole Foods nearby. My daughter has proven to be very sensitive, so we really appreciate the input! I hope someday we can actually feel comfortable going out to eat with her. Hopefully we can learn more at her appointment in Boston!
  2. Boston- dedicated gluten-free restaurants?

    Thanks!
  3. How is everyone handling the non-celiac siblings? Mine have 2 little sisters who have not had gluten (living in a strictly gluten-free household and go no where without us). I know it would be easier when we are off visiting family or friends to just feed them the "gluten" food provided, but we just bring gluten-free food for the whole family. I'm not sure when to "gluten challenge" them or just let them eat whatever when not at home. Can they have a reaction the first time they eat gluten or would they need to eat gluten for a while to trigger celiac?
  4. Wow! It sounds like you are describing my 7 year old! We have the same problem. Celiac is making us so very anti-social. There have been multiple occasions that I just declined invites because she is that sensitive to tiny amounts of gluten. I struggle enough with just family get-togethers in which I'm there! I wish I had good advice for you...
  5. We are taking our children to see Dr. Fasano at Mass Gen and will be in Boston. We will only take them to dedicated gluten-free restaurants right now- Does anyone know of a good one in the Boston area? Thanks!
  6. TTG questions

    Thank you for the congrats! We were thrilled to have her TTG finally come down. We were prepared and about to start the Fasano diet if it wasn't! We're actually having a bit of a hard time believing it is actually down and are trying to determine if it is because we also recently cut quinoa from her diet. Thank you also for the information about the labs... that makes so much more sense. They have been testing EMA and TTG only. (EMA is now negative too!!!) We asked the GI last year if we should start checking DGP and she said it was pointless at this point since it wasn't tested for initially. Thoughts on that one? Should we request it? Thanks again!
  7. I just wanted to chime in that we have 2 children diagnosed (at ages 3 and 4 1/2) with their great aunt as the closest known celiac. We now suspect at least another great aunt and maybe grandmother also had/have celiac but don't have confirmed diagnoses. Remember, that a large number of celiacs (80%?) are undiagnosed as the symptoms vary so drastically. Best wishes for your daughter's health!
  8. Our daughter has been strictly gluten-free for over 2 years now. She's had labs checked every 3-6 months and this is what we've seen (TTG only): 69, 73, 81, 41, 64, 14. They are telling us she's "negative" now that her TTG is at 14 (looks like the reference range on the lab is negative is <15). I'm seeing other places where <10 is negative, or <20 is negative... can anyone explain this to me? What does this mean? What do celiac's typically see with their TTG levels? Thanks!
  9. Here's our story: 2 years ago, our 3 and 4 1/2 year olds (at the time) were diagnosed with celiac. We were convinced to put them both through a biopsy after having positive labs. Our 4 year old's small intestine was clearly and significantly damaged and she was quickly diagnosed. Our 3 year old's biopsy only showed a little damage, but not enough to diagnose. Shortly after, we had a new GI doctor who actually knew celiac disease and diagnosed our 3 year old as well because he had elevated TTG and EMA which went to zero after starting a gluten-free diet. There was nothing else that could have explained the elevated labs... He was either too young to have had much damage done or they biopsied an area that was not damaged (yet). I believe there is new research that is saying the biopsy is not necessary to diagnose children with elevated celiac labs. However, after your son is put on a gluten-free diet and heals, there is no way to assess what damage is/was there at a baseline upon diagnosis. We have been struggling to get improved labs on our daughter for 2 years now and are sort of grateful to have a biopsy when she was diagnosed, so we can know if she's healing should we choose to re-biopsy. Good luck with your decision!
  10. Thank you for the corrections! I hope I didn't lead anyone wrong! Sad, that after 2 years, I'm still not sure about all of the labeling!!!!
  11. I just wanted to chime in and say I hope your daughter gets to feeling better soon. I know how overwhelming it can be as a parent to navigate the celiac world for our little ones. My daughter was diagnosed at 4 (almost 7 now) and was very sick with a lot of damage. It takes a while, but you will soon get used to bringing her food where ever you go. I keep frozen cupcakes (chocolate is the best) on hand for any time she has an occasion that others are having treats. I found nutella makes an easy, quick icing too (without needing to open an entire can of frosting). Good luck!
  12. Someone correct me if I'm wrong, but I believe companies can label foods "gluten free" as long as they have no gluten containing products in the ingredients. "Gluten free" labeled foods can still be highly cross contaminated and even test above the 20 ppm standard. I've started only purchasing foods labeled with the "certified gluten free" label as I believe they are tested as less than 10 ppm (once again, correct me if I'm wrong!) We think our daughter cannot tolerate oats even if gluten free, so Cheerios are definitely out for us. We really did love the Van's products (crackers, bars, cereal), but most are made with oats.
  13. We've been completely oat free for a year now. We've eliminated quinoa and decided we are going to go for the Fasano diet, but only for her (which I know will be tough to see her little brother and sisters getting foods she can't have). I don't think I can make things from scratch for a family of 6. We plan to make a vacation of the road trip to see Dr. Fasano and see Boston. We figured we can have him see our son too while we're there anyway.
  14. Does anyone know where I can get more info about Dr. Fasano's diet? I plan to start my 6 year old on it and can't any find details... I have so many questions! Any blogs out there that anyone knows about with recipes/ideas? Why no frozen fruit? I get that frozen veggies are often processed with seasonings, but fruit? Why is Gatorade allowed?! Can I make my own rice flour to use? Is the following allowed: fresh garlic, peanuts, ground beef/turkey, cocoa, maple syrup, sugar, coconuts, cinnamon sticks... (that's my list so far) Thanks for any help anyone has!!!
  15. I posted last month about not knowing what to do about my 6 year old daughter's elevated TTG... "Elevated TTG after 2 years of gluten free diet in 6 year old" (TTG over the 2 years: 69 -> 73 -> 81 -> 41 -> 64) We saw our GI doc and she was not concerned and just said we'd check her labs in another 6 months and to not change anything since she was continuing on her growth curve. Someone on that post mentioned Fasano and we started to look into him. We are now planning to : 1) start the Fasano diet with our whole family (our 5 year old also has celiac but with normal labs and our other children are ages 3 and 1) 2) drive out to Boston to see Dr. Fasano in August (which will not be easy with 4 young children and maintaining the Fasano diet) Am I over reacting with this plan?