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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.

CeliacMommaX2

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  1. 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!
  2. 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!
  3. 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!
  4. 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!
  5. 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!!!!
  6. 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!
  7. 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.
  8. 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.
  9. 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!!!
  10. 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?
  11. Thank you, everyone for your input and for all of the helpful links and personal experiences. At first, we thought we would just follow the doctor's instructions and not change anything and check more labs in 6 months. But it is soooo hard not to DO something! Yet, she doesn't seem to be having any symptoms. What is everyone's thoughts on proposing this to her GI doc: cut quinoa for a month, check labs; then cut corn for a month, check labs. Is a month long enough to see a change?
  12. My daughter's labs have been the following: diagnosis: TTG 69, EMA >1:320 6 months gluten-free: TTG 73, EMA 1:80 12 months gluten-free: TTG 81, EMA 1:80 (we eliminated even gluten-free oats at this point) 18 months gluten-free: TTG 41, EMA 1:20 2 years gluten-free: TTG 64, EMA 1:20 Her TTG levels are right where we started at diagnosis 2 years ago! We are a strictly gluten-free household (including all lotion/shampoo/soap) and she is homeschooled and never eats out. I would be shocked if even cross contamination were an issue. She has never showed symptoms of being glutened. I know other autoimmune diseases can elevate TTG levels... her thyroid levels and glucose are fine. Anyone have any idea what to ask of the doctor? I feel like we are doing nothing but drawing labs every 6 months while we are continuing to have elevated labs. Is she healing? Should we ask for another biopsy? Anyone have any similar experiences or advice? We are also exploring the idea of going to Chicago or some where that there is more expertise in the Celiac world. Any suggestions (we're in Michigan)? Update: We just had her GI appointment and the doc said we are just going to check again in 6 months. No further changes to diet (gluten and oats free only right now). She didn't seem concerned since she is maintaining on her growth curve. The doc seemed to not have a lot of faith in the labs and gave a lot of excuses for why they were still elevated (technician error, not intended for monitoring...) I would still love to hear others opinions and experiences if they have any! I'm desperate to do something to help my little girl get better!!!
  13. Does anyone know if terra cotta clay is gluten free? I assume it is, but thought I'd just check with others. My 4 & 6 year olds are supposed to use it at camp next week for a craft. Thanks!
  14. Anyone know of any baby food pouches that are gluten free? We love to have them on the go for our kids (not just baby), but I have no idea which ones to get now! We used to get Meijer brand and Plum. Thanks!
  15. Thanks for everyone's suggestions! I think I felt at a loss when we had to cut oats- we used to do cheerios and oatmeal regularly and now those are out. She has a sensitivity to oats as well as wheat/barley/rye.