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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

CeliacMommaX2

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  1. My daughter's TTG levels were elevated for 2 years, then she hit 14 (<15 is negative), then went back up to 24. Her EMA is negative. I just saw the article "Can Undetectable Negative Tissue Transglutaminase IgA antibodies Predict Mucosal Healing in Treated Celiac Disease Patients?" and am all worried again about her. Does this mean she's not healing? We are above super strict, gluten free household, keep her in a bubble and don't know why her TTG is elevated. Her doctor is not concerned, so I am trying not to be, but I want me little girl to be healthy! Anyone else have any thoughts on this? Thanks!
  2. Everyone here has had great advice! Celiac has made me a stronger person in standing up for myself and my family. I HAVE protect my children as their mother, so I must stand up and do what is best for them. We travel to visit family often, and while we get lots of questions and people who don't get it, I bring our own pots/pans, utensils, cutting board, etc. Meal planning is a must when we're away and we've invested in a nice Yeti cooler that practically lives in our trunk. We bring our own ham, sweet potatoes, green beans, etc to holiday functions even when family has insisted what they are making is safe. It's just easier for me to relax and enjoy family when I know my kids have safe foods to eat. Good luck! The first times traveling are really hard, but you'll soon get into a groove.
  3. We were stressed about this as well with our daughter. It ended up taking 2+ years to get her to "negative" TTG levels (which then came up again at 2.5 years). We also live in a gluten-free household and never go out to eat. Because she started growing again, the doctors are not concerned. But as a mother, I'm always worried about it! Just do your best and I'm sure he will continue to heal. I've been told the younger a child is diagnosed, the more fully they are able to heal.
  4. I know this started out as an old post, but I wanted to comment that an encopresis diagnosis is what led us to finding celiac in our 4 year old. What helped us to beat the encopresis is Dr. Collins method- Soiling Solutions. (plus I'm sure the gluten-free diet helped!)
  5. Boston- dedicated gluten-free restaurants?

    Thanks everyone for the tips on where to eat in Boston! We had lunch at Whole Foods and were going to try to go to Legal Seafood, but they were too busy and the kids were tired. We did find a great allergen free bakery in one of the markets and got the kids muffins and blueberry coffee cake as a treat! Loved our time in Boston- what a great place!
  6. My husband and I have been convinced to go through genetic testing (if not too expensive). I have a few questions... Do I ask the doctor's office or call our insurance about how much it will cost? If both my husband and I have both genes, does that mean all of our children will also have both genes? We already have 2 with celiac, so it seems our odds are high... I wonder if we would need to bother getting the non-celiac kids tested if that was the case. Is there any reason to test a person who has already been diagnosed with celiac? (probably a stupid questions, but I'm asking anyway ) Thanks!
  7. 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!
  8. Boston- dedicated gluten-free restaurants?

    Thanks!
  9. 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?
  10. 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...
  11. 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!
  12. 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!
  13. 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!
  14. 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!
  15. 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!