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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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About snowmom

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  1. My Target carries these. They're not quite as delicious as the original (and a little too puffy), but my kids like them pretty well!
  2. This is what we do. 4 yr old daughter is celiac, 2 yr old son tested negative and has no symptoms. Our home is entirely gluten-free (except for the occasional beer for us parents ). Outside the home, our son consumes whatever he likes, which includes a fair amount of gluten through his daycare lunch program. We will continue testing him periodically. My main concern is that I want the re-tests to be accurate, but also it's a hard diet to follow, and not one that I would sign him up for lightly at a young age. Also, our daughter's preschool is bending over backward to accommodate her celiac, and I wouldn't ask the same of our son's daycare unless I believed it was medically necessary. (That might not be as much of an issue with older kids, I haven't been there yet!)
  3. I do think it's worth investigating. Here's our experience: We have a 4 yo celiac daughter. Right after her celiac diagnosis, her then-20-month-old little brother started experiencing chronic diarrhea that went on for weeks and weeks and frequently got him sent home from daycare. He was occasionally on antibiotics also for ear infections, but not all the time. I was totally convinced he also had celiac. But then we did two rounds of blood testing which revealed no celiac antibodies. About two weeks after we got those comforting results, the diarrhea cleared up on its own and he hasn't really had GI issues in the 4 months since. He's now basically healthy, although he occasionally has minor skin issues. Because of the family history, we will retest him periodically, but for right now, he seems to be fine. I'm just offering that as a comforting anecdote to show that frequent diarrhea does not necessarily equal celiac. But I think your doc is def doing the right thing to rule it out, since the tummy issues are combined with a slow down in growth.
  4. Thanks, that seems like it's worth a shot. maybe we'll get someone who can give us a little more info (though I do take your point, Stephanie,about clueless hospital folks!) We're going to a big Children's hospital. After my post it also occurred to me that we can ask someone on the GI staff to help us track down this info from their colleagues....
  5. Really, I'm just posting this because I need to vent, i don't really have a question. My 4 year old daughter is having an adenotonsillectomy in a few weeks. After surgery, she will be on juices and soft frozen foods, and she will need to show that she can hold down liquids before they will discharge her. I'm pretty sure all she will accept in this scenario will be a popsicle. We just went through a similar drill when her non-celiac brother had his adenoids out, so I figured I should call the post-op nurses to make sure that the hospital's popsicles, etc are gluten-free. All that the post-op nurse would tell me is that their apple juice is definitely gluten-free, but she is not sure about anything else they stock in the recovery area. When I asked if she could tell me the brand of popsicles, etc, or even check the packaging, she brushed me off, and told me it wouldn't matter what she told me because "you never know what else they put on the manufacturing equipment." Which is kind of true and kind of not, but it still would have really, really helped me if she could have gotten off her lazy duff to open the freezer and give me a brand name. Instead of doing that, she told me that we should just bring our own popsicles on ice. So now, in addition to getting myself and my poor kid up at 4 a.m. for the procedure, I'm also going to have to worry about keeping popsicles frozen for an hour and a half of travel and check-in time, and then find a freezer in the surgery area. This is soooo annoying, such a lot of fuss over a few little popsicles!
  6. Thanks for everyone's recommendations, and especially for this one!! I hadn't heard of Go Picnic before I read your post. I just headed to Target, and cleaned out their selection of gluten free Go Picnic boxes, and it looks to me like they will be the perfect solution -- healthy gluten-free choices, good portion sizes, well packaged for travel. If they turn out to be a hit on our flights, they might also help out with feeding our kiddos on road trips this summer. Thanks for all the input, guys!
  7. Thanks so much to all of you! These are all great tips. I like the idea about trying to board last, since priority boarding has never helped that much with a high-energy toddler who doesn't need to sit still for an extra 20 minutes while all the other passengers boards. The diabetes doesn't severely limit her food choices in the same way that celiac does -- we just have to count her carbs and emphasize healthy choices. But nothing was truly of limits until celiac. The real problem for traveling with diabetes (at least it has been for us) is that she has been on a pretty regimented eating/meal schedule since diabetes diagnosis, so constant grazing isn't an option for her the way it would be for a lot of little families traveling with little kids. I like the idea to bring stuff I know she can will eat on ice and then just plan to refill the ice after security; I hadn't thought about that as a way to transport healthy/gluten-free food and avoid concessions.
  8. Thanks for the tip about the Schar crackers! I didn't know about those and will try to track them down. And good point about the PB packets. This is still feeling pretty new to us (even 3 months in), so we don't have a great line-up of on-the-go foods yet.
  9. I'm flying solo this weekend with my celiac 4-yr-old and her 2-yr-old little brother (which seems like a very bad idea as I type those words!) We'll be at the airport during the kids' morning snack time and on the plane during their regular lunch time. My 4-year-old also has type 1 diabetes, so keeping her fed on a regular schedule is even more important than with the average preschooler. In the past, pre-celiac, when I've flown with the kids, I've always grabbed them hot bagels right before takeoff and it took them half of the flight to finish the bagels, which addressed both food and entertainment issues. I'm obviously going to have to change things up this time, but I am a little nervous about finding anything gluten-free from airport concessions. Does anyone have good ideas about how to handle this? Or ideas about anything packable that would cause minimal mess on the plane? Also, we're flying out of Denver airport (DIA), if anyone knows any good gluten-free-friendly spots there.
  10. I had a similar issue with my non-celiac younger child. Around the time his sister was dx-ed celiac last fall, he was experiencing chronic diarrhea. His height and weight and behavior were right on track, though. The pediatrician was a little skeptical that he had anything more than "toddler diarrhea" (whatever that is!), and she said that the testing might not be that accurate since he wasn't 2 yet. Still, she humored us, and we ran two rounds of tests that revealed IgA deficiency but no celiac antibodies. I was all set to push for more comprehensive testing in January, but then the diarrhea pretty much resolved on its own very suddenly, with no dietary changes (he has never consumed a lot of refined sugar or juice, so there wasn't much to eliminate from his diet). I think in total he had diarrhea almost daily for about 6 to 8 weeks, and the pedi was never able to give us a satisfactory explanation for what was going on. At this point, he doesn't have any celiac symptoms other than some weird stuff going on with his teeth that I've posted about elsewhere on this board. I'm not sure if this throws any light on your situation, except to say that we went through something similar, and are now pretty satisfied that he's currently healthy. We're gluten-free at home, but he eats a conventional diet at daycare. We do plan to re-test him periodically because of the IgA deficiency and the prevalence of celiac and other autoimmunes in our family.
  11. Thanks to you both for responding! This is really good information to have. I have to go back and pull the 2d panel they did after the low IgA result, but I do recall that when I posted about it on this board, a few of the veteran celiac moms here said the testing sounded incomplete. As for other symptoms: last fall, around the time of sister's dx, he was having quite a bit of diarrhea and I was very concerned that we might be missing something. But his system has regulated since then, and the diarrhea totally resolved about 2 months ago. Besides this enamel thing, he really doesn't have any issues of any kind at the moment -- his appetite, digestion, skin, behavior, and growth all seem perfectly normal. So, like your second child, cmc811, he seems low risk. But I did think it was weird that the dentist made such a big deal about the enamel issues but then was so dismissive of my follow-up questions.
  12. This is interesting, thanks for posting. I have a question about your signature. I noticed that you mentioned your 2d child has enamel issues on his baby teeth? Is that significant for celiac or autoimmune issues? After my daughter was dx-ed with celiac, we had a blood panel done on her 2-year-old little brother. He had low Iga, which led to further testing, but that additional testing was negative. Around the same time, the pediatric dentist said his enamel didn't look right, that he had white spots on most of his baby teeth. Apparently that can be bad for future dental health, but the dentist didn't want to speculate on why it was happening. I specifically asked about whether that could be a symptom of celiac, and the dentist waved off my question. Do you know if there is a link between enamel issues and celiac?
  13. I'm pretty new here (dd just dx-ed in December). Maybe one of the veteran moms can chime in and offer some suggestions about private labs, their reliability, and which blood panels to seek.
  14. Yes, if you want a firm answer on whether they have celiac, you will have to reintroduce gluten and do some testing. Can you go to another pediatrician for advice on this, including how much gluten and how long to do the gluten challenge? I don't know how reliable the private lab tests are; the gold standard is a blood antibody test, typically followed by a biopsy (though some GI docs are apparently a little looser on requiring the biopsy in kids if antibody levels after consuming gluten are very high). It sounds like you got bad advice from the first doctor. When we got my younger non-celiac child tested recently, all we had to was ask for our ped to order the blood draw, and she was happy to oblige even though DS had no major gi symptoms. I agree with you that a celiac diagnosis or a doctor's opinion on gluten intolerance will help get other caregivers (schools, relatives) to take it seriously.
  15. On the pickiness question, maybe our experience will provide some comfort: My DD is extremely picky, and she basically refused all food at many meals in the weeks before diagnosis without ever explaining why. We were on the total wrong track in trying to get the bottom of her food refusal, but fortunately her celiac was diagnosed through a routine screening related to another health condition. Once we initiated the gluten-free diet, she started eating normal to large quantities again (including lots of eggs, fruits, and veggies). DD still has a pretty limited range of foods that she likes, but she will now eat a TON of the food she does like. I'm sure this varies hugely among kids, but the gluten-free diet basically cured our DD's lack of appetite within a week of starting it. Something to keep in mind if your child does turn out to have celiac. As for the protein supplement question: does your GI have a dietitian in his practice that you can call? The dietitian should be able to offer some suggestions, and also flag other nutrient deficiencies that can arise on the gluten-free diet.