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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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  1. Takala, the petition is for a cookie free of the top 8 allergens and also gluten-free. This way, one cookie would cover not only the celiacs, but also the peanut-allergic children, and anyone else sensitive to the top 8 - including soy. So many families have multiple children with food allergies to different things - it gets to tricky and limiting! It can be done, and I truly hope the Girl Scouts will decide it is worthwhile to make their cookie program inclusive.
  2. KarenG, ITA, they will need another bakery to make them. Maybe Enjoy Life would contract out, since they are already a gluten-free, nut-free facility.
  3. A girl scout troop has started an online petition for Girl Scouts to come up with a gluten-free allergen-free cookie. Currently, the two baking companies for GS say there isn't enough of a market for them. There are SO many little girl scouts with celiac, gluten sensitivity, or other allergies (peanut, egg, etc) who can't eat the cookies they are asked to sell. Plus countless neighbors, etc, who can't participate because they can't eat the cookies. On behalf of my soon-to-be a girl scout daughter, who is off both gluten and dairy, I'm posting the link to the petition: http://www.change.org/petitions/encourage-the-girl-scouts-to-sell-an-allergen-free-cookie It is just beginning to get traction, but through social networking, I think we can show there really is a demand for this product. PLEASE share with your local celiac groups, pass on to the mom of the peanut-allergic child, etc. We can do this!! Thank you!
  4. Thank you for all your feedback. Just to complicate issues My 5 year old woke up with belly pain last night. Felt like she was going to throw up in the morning, then it went away. By 1pm, she had thrown up at a friend's house. Felt naseous the rest of the evening, D at bedtime, and just woke up to throw up again. She's clearly sick. Now I remember that late last week, when my 3 year old had D for no reason I could trace at all, she was extremely cranky (my husband kept asking me if she had a fever) and complained that her tummy hurt (which she never does when she's having a reaction). So... I think a bug went around my family. Also, I'm being tested for Lyme - my practioner thinks that my non-typical fibro isn't fibro at all. Unfortunately, nothing happens in a vaccum. I plan to stay gluten-free for another week or so, then test again.
  5. Also check zinc levels. I do think the symptoms warrant a trial. OT helped my daughter's SPD quite a bit, but even when she "graduated", she couldn't stand dress-up clothes. Yet several months after being truly gluten-free (she needed a clean-out to reboot her system), she was able to prance around the house in princess dresses.
  6. You feel the effects when? Friday night? Saturday morning? Later? Both my daughters are gluten sensitive/celiac, and I've been off gluten for 6 months - very strict - to see if it would help my fibromyalgia. It didn't seem to help. I tried something with gluten a week ago as a test, and didn't see any effects. So Friday night, my husband and I went out to dinner and I didn't bother with staying gluten-free. I seemed fine on Saturday. We had a late Saturday dinner (gluten-free)and I immediately had some stomach discomfort. Intestinal pain overnight and then some cramping/loose stool on Sunday around noon. So... could it have been a delayed gluten exposure? Or did I eat something bad Saturday night? I'm mostly curious, though, to hear your experiences. I sometimes struggle with tracking down the source of x-contamination/accidental gluten exposure for one of my daughters who seems highly sensitive.
  7. Dr Anca Safta is the pediatric GI with the Celiac Research Center in Baltimore. They are affiliated with the U of MD hospital downtown. The office is within the hospital - but the office is only for pediatric specialists and the surgical procedures are done in a children's hospital-within-a-hospital. The waiting room has toys and murals, the exam room has child-sized chairs. Dr Safta is very nice and is great with kids.
  8. So far, she's getting backed up again. I was trying to be conservative in the doses - frankly, I skipped a couple of days after the cleanse, then chose the smaller of the recommended doses (doc said 1/2 to 1 scoop, and I've been doing 1/2, thinking she's only 35 pounds, why give her the adult dose?) I'm going to slowly increase her dose - want things to be on an even keel before school starts next week!
  9. Up to 5 poops/day, mostly undigested food. Today, her first poop was at 1:30pm, and from a distance, it would have looked normal and formed (up close there was still undigested food, but not as much). So maybe we're turning a corner...
  10. My 2 year old has been gluten free for one week. I have not seen any changes yet. I know one week is not much, but I was so hoping for a magic bullet... When did you first notice changes/improvements?
  11. My older daughter has major constipation issues. Here's what her GI (who happens to be at the Celiac Research Center in Baltimore, but my daughter does not have an official celiac dx): 1. Do a 2-day cleanse. Only clear liquids for 2 days. Strained chicken broth, vegatable broth, clear juices, popsicles, etc, and WATER. Take a double dose of Miralax at 2pm, 4pm, and 6pm on the first day. Take a double dose of Miralax in the morning, 4pm, and 6pm on the second day. 2. After that, take one dose of Miralax every day. 3. Sit on the toilet (don't strain though) after EVERY meal. This will help re-train the bowels. Do #2 and #3 for 6-8 weeks. We just started (did the cleanse last week) and she wants us back for a follow-up appt in 6-8 weeks.
  12. Another possibility is that you are IgA deficient, and so you would otherwise spike a much higher number on Enterolab, but you don't make enough IgA. This is rare, but this is the reason a blood celiac panel includes Total IgA as one of the tests, to make sure the other tests (IgA tissues transglutamase, etc) are valid. I think it's worthwhile to try a completely gluten-free diet (it could take 3-6 months to see results).
  13. JamieCarin - As long as the lab report has the correct age listed, then it should automatically give the correct range for her age. I don't have my personal labs in front of me, but my range is much, much higher and my actual number is something like 260, which would be waaaay high according to your daughter's range, but pretty much in the middle of mine. So her range looks correct to me. Failure to thrive refers only to growth charts - they can be completely perfect otherwise. I've heard both 3rd percentile and actually falling off the charts as being the definition of failure to thrive. My GI actually listed FTT as one of the official reasons for the endoscopy/colonoscopy for my 2.5 year old, who is actually at the 25th percentile - but she was 97th or actually off the charts on the top end for her first 6 months of life. So in this case, it was the falling down the charts that was the reason for concern. But, she's brilliant and super strong She's certainly "thriving"! A traditional allergy test is either a skin prick/scratch test or a RAST/IGE test. It measures the number of immunoglobin E's that your body makes to something. This is how you measure an allergy like... shellfish give you hives or peanuts make your throat close up. An IGG test is one that most allergists think is BS. Some nutritionists, naturopaths, and alternative MDs use them. They are not perfect tests, but can give a clue as to which foods to try to eliminate to see if you get a response. There is something called non-IGE mediated allergies - this is medically recognized - but there is no perfect test for it. The only true test is eliminating it and then monitoring the response (and then doing a challenge where you give it to someone after not having it for 6 months and then see if they react). So, for traditional testing, if you think your kids have a problem with milk, you could get an IGE/RAST test run against casein, which is the protein in milk, and you could also get a lactose tolerance test run (it's like... a breath test or something?). Lactose intolerance and casein allergy are totally different things, though both would show up with drinking cow's milk. Hope that helps!
  14. The Celiac Research Center is part of the University of Maryland hospital/medical school. It is not a stand-alone facility. They have all specialties there, and they have a children's hospital within the big hospital. Dr Safta is actually treating a 19 mos old who was diagnosed with Crohn's at 12 mos, which is quite rare, so she is not exclusive to celiac. Just an fyi - I didn't realize all of that until we went there. I would try both Children's and the Celiac Research Center - see where they can get you in the fastest.
  15. Just noticed you were in the DC area. I am too, but we went to the Celiac Research Center in Baltimore and saw Dr Safta there - she is the pediatric GI who works with Dr Fasano, who is a top celiac researcher. She was knowledgable and really great with little kids.