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      Frequently Asked Questions About Celiac Disease   04/07/2018

      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 kb27

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  1. Thanks for your comments. We don't have a 504 plan - the school said they could take of everything without one. He does have a health plan on file. I like the idea of asking them to have the non-cooking part of the cass taught elsewhere. Then we wouldn't have to worry about what the other classes are doing in there. I agree whole-heartedly that kids should learn to cook. I think it's even more important for celiac kids to learn to cook! We have been teaching our sons at home - I don't think he will be missing anything by skipping the school cooking section. Here is what the school has offered so far: The guidance counselor suggested he could just take another class (which is my preferred option!). But then the principal said she would like him to take the rest of the class and he would be excused on days in which the class is cooking. That's what is in his file right now. I am concerned that he also needs to be excused on the days other classes are cooking, too, for the reasons many of you mentioned above - gluten in the air. I pointed this out but have not heard any more back. Maybe I just need to contact the teacher and see how many days kids are "cooking" and how many they aren't. If he's going to be pulled half of the days, he might as well take art or music. If it's just 2 weeks, then that's not so bad. Honestly, I have heard this class is terrible (cooking is only one small part of it), and thus I think my desire to figure out a way to make it work is not very strong. I don't think he would be missing much in terms of curriculum, and then we wouldn't have to worry about him getting sick all the time.
  2. My son was diagnosed with celiac 3 years ago. We (immediate family) were all tested and came up negative. The specialist he went to said all immediate family members should be retested every 2-3 years. Since we made the whole house gluten-free, none of the non-celiacs in the family each much gluten. Thus, in order to get re-tested, we need to eat some. Does anyone know what the current recommendations are for a gluten challenge? I've seen everything from 4 pieces of bread for 6 weeks to a couple of crackers a day for 12 weeks. Nobody will likely get sick doing this, so we don't need the bare minimum, but since all gluten is eaten outside the home, I don't really want to have to stuff 4 slices of bread in me every day at work if I don't have to. Also - when we were originally tested, the doctor ran total IGA and ttg IGA. Do we need both again? Or is just ttg IGA enough? (Total IGA #s were normal for everyone last time.) Thanks!
  3. My celiac son is due to take the modern equivalent of home ec next year. Part of it involves cooking. I got a note from his doctor stating that he should be excused from cooking class for medical reasons, but we are at the point now of trying to structure alternatives. My concerns are that being in a classroom in which a bunch of 12-yr-olds have been trying to cook with flour will give him a permanent stomach ache all semester. I took that class when I was 12. It was a mess. It doesn't help that he chews his fingers constantly, so if there's gluten around, he'll ingest it. I think it will be easy to get the school to excuse him from classes in which the kids are using gluten ingredients. But what about the times in which his class is doing something else but other classes are still cooking? One possibility that came up is to just have him take something else the whole semester (art or more music), but the principal seems to be resisting that idea. Has anyone else gone through having a celiac kid in home ec? Thanks!
  4. It really depends on the school as to whether or not you need an official diagnosis. Our elementary school was willing to work with my son even without a letter from the doctor. We had no problems with any teachers, from art to after-school care. They were very accommodating. We did not attempt to have him eat at the cafeteria. Now he's in middle school. There, I think the letter is more important. He had to get a note from the doctor to get accommodations in the cafeteria. And then we needed another note specifically relating to cooking class (because the first note just said he couldn't eat gluten). We did not get a 504 plan set up because the school seemed able to just work with a doctor's note.
  5. We don't know anyone else in person who has a kid with celiac, but we do have friends who have been very supportive. They make sure that there is food our son can eat when we go over to visit. And my son's friends know that he can't just eat whatever they are having. He's older though (11 now, but 8? when diagnosed). We have found an active ROCK group in our "area", but it's in the city 3 hours away, so I haven't actually met the people posting on their facebook page, for instance. 2 is hard - there is food everywhere. My suggestion would be to show up at playdates with snacks to share with the other parents and kids. Ask if they would mind putting away the cheerios during the playdate, so that your child could eat what everyone else is eating, too. And hope that over time, your friends "get it". Sometimes you just have to forceful and explain what gluten does to your child. Not everyone knows what celiac is or that minute amounts of something (like the cheerios everywhere) can make your child sick. You don't need to have friends with celiac kids or gluten-free kids to still have a safe and accepting environment for your child, but you do need friends willing to support your efforts to keep your child safe. We have found most places we take our son have been great (school, day care, friends' homes, relatives houses, etc.), and some want to be helpful but need help knowing how to do that. Sometimes, just showing people what is and is not ok (and lots of "regular" foods are gluten-free) helps them to know what to have on hand when your child comes over to play. Maybe the next time you have everyone over, put out some yummy gluten-free snacks that fall into the "regular foods" category (fruit, veggies, cheese, chips & salsa, etc.) so that people start to realize that you don't need to go to great lengths to accommodate eating gluten-free, but you do have to pay attention to it. Good luck!
  6. We have one kid with and one without celiac. We keep a gluten-free home, but kid #2 (non-celiac) can eat gluten whenever he is out (school lunches, etc.). When we got everyone screened for celiac, after kid #1 was diagnosed, we also had kid #2 (and me) have the genetic test done. Although I have one of the celiac genes, kid #2 did not have any of the ones they tested for (DQ2 and DQ8). Although I know sometimes people can get celiac without these genes, it is rare, so we are assuming kid #2 is safe. If we see symptoms, we'll get him checked. Otherwise, I'm the one who is going to be checked every few years, and I have to make myself eat enough gluten ahead of time to make the test accurate.
  7. Schar cheese bites taste like Goldfish & Cheezits, too.
  8. Thanks for the reply. I think he probably had both the glutening and some illness at the same time. The fever and full-body rash seemed a bit at odds with the standard GI issues. He's not on any medications, but I suspect the same kind of thing could be at play - the immune response to the gluten exacerbated other conditions. And he is better now, although he ended up missing 2 days of school and the last day of camp.
  9. Thanks for the replies. He was only at camp for 24 hours (it was just a weekend thing), so I can't just blame the kids. Of course, he spends all day with them at school during the week, so it could still be a bug. Now he's totally itchy all over. This is weird.
  10. My son got glutened this weekend at a camp. It's the first time since he was diagnosed with celiac and went gluten-free that I know he had gluten. Within about 12 hours he was nauseous, unhappy, and running a fever. So we came home early. By that evening he was able to eat again and the fever broke overnight so I sent him to school yesterday. And now this morning the fever, nausea, and lack of appetite are back. It seems way too coincidental to just be a stomach bug, but the fever seems weird. And since we know he accidentally ate some gluten, it seems like the cause-and-effect is clearly there. But I'm curious if others have had fevers when glutened. I posted on the parent's board, too, but thought I might catch more people over here. Thanks!
  11. Cara - we just had a similar issue with our son, who was glutened and got quite sick afterwards (about 12 hours later he got really nauseous and actually got a fever). His symptoms were a little different (so I put my query in a separate post to not hijack yours...), but he had not had any GI symptoms prior to going gluten-free. From what I hear here, celiacs who are gluten-free can become more sensitive to gluten, and vomiting seems like a perfectly normal reaction to accidentally ingesting some. It's hard when you don't really know if he had any or not. My son has certainly had unexplained stomach pains that always made me wonder if he had been glutened, even though he was fairly asymptomatic before going gluten-free. This time the cause-and-effect seemed pretty clear to us, but he got a fever in addition to the nausea which seems like a somewhat weird thing to happen from eating gluten. It's hard when you don't really know if he's actually had gluten or not, isn't it?
  12. My son was at a camp this weekend (with me). The camp actually had pretty good procedures for keeping kids with dietary restrictions safe, but one night procedures weren't followed and my son was given some gluteny gravy. He got about 3 or 4 bites down before we figured out what was up. Oops. It's the only time in the last 2 years that I know for sure he has eaten gluten. The next morning he was nauseous, unhappy, exhausted, and felt rotten. I took him home early. He slept for 5 hours straight and woke up with a fever of 101. He didn't eat most of the day, but by dinner seemed to be doing better. His fever was gone this morning, so I sent him back to school today. Before going gluten-free, he didn't have any outward symptoms. He was just anemic. I know that celiacs often get more sensitive to gluten once going gluten-free, but the fever thing seems weird. It also seems too coincidental that this wouldn't be from glutening, given the timing and the fact that he was also nauseous and didn't want to eat all day. Anyone else get a fever from being glutened?
  13. Our experience is just one of many, but we did see growth right away. My son was 8.5 when he was diagnosed, and he, too, was small. He grew a lot in the first 6 months gluten-free (like 10 pounds and 4 inches). We were shocked. We hadn't really noticed how small he was and then he was outgrowing all of his clothes. Two years later now, and he's been going up in his growth charts. It sounds like you are seeing positive signs physically and mentally. I would give it time! Every kid is different.
  14. My son was 8.5 when diagnosed. He was small (maybe 50 pounds), but not overly so. And he was anemic, but borderline so. It was the iron deficiency that caught our doctor's eye - on a blood test run for something else. And his iron levels didn't improve with supplements. That was what prompted the celiac test. He never had GI problems. After going gluten-free, I think he gained 10 pounds and grew 4 inches in the next six months. It was amazing. He's been gluten-free for 2 years now, and has been shooting up in the growth charts. So I guess to answer your question, my son didn't really lose weight before going gluten-free, but his weight gain was really slow (almost stagnant for awhile). And his iron levels weren't extremely low, they were just below threshold. It was enough for one pediatrician to notice and another not to. I'm glad ped #1 followed up. What prompted the celiac test was that iron supplements didn't seem to do anything to improve his levels.
  15. I can't help you with New England camps, but we sent my son to one of the Concordia Language Village camps in Minnesota last summer. They did a great job with his food, even though the camps are set up around family-style eating. They let him know which dishes he could and could not eat, and the chef prepared gluten-free alternatives for him for the ones he couldn't eat off the shared plates. He went to the Japanese camp and had a great time.