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    • Frequently Asked Questions About Celiac Disease   09/30/2015

      This 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 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 Store. For Additional Information: Subscribe to: Journal of Gluten Sensitivity


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About Benshell

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  1. Hi - I'm the "good news" poster. WHen my child was diagnosed, I didn't know any better and the first year was a learning experience. Once my daughter moved up to elementary school (k-1 is in a seperate building), the vice prinicipal is the one who actually approached me about the 504plan - which I know from others probably never happens. So onece you get a diagnosis from the gastro, you will need it in writing saying your kid has celiac, must eat gluten free, not be exposed to any gluten products. The reason I say that is they need to make accomodations for classroom activities such as cooking, science and art where there could be exposure to gluten as well as precautions in the cafeteria. I would not suggest buying lunch until you learn as much as possible and feel comfortable with it (took me 3 years). Luckily, my daughter's art teacher has a daughter with celiac (we've become friendly) so she ordered gluten-free art supplies for my daughter before we even had the 504 plan. But the 504 plan is necessary to cover the costs. In order to get the 504, we sat down at a meeting with the VP, school nurse, teacher. We do this yearly. 1/2 way through the year I wanted to start my daughter on buying lunch and sat down with the VP, nurse, food manager for the district and manager of the cafeteria for my school. I refused to let her eat what everyone else was having because of contamination issues (i.e. a burger without a bun). So they make her a gluten free equivelent. We've only done gluten-free nuggetts and gluten-free waffles about twice a month. Thats enough for her and me. Next year we will get it incorporated into her 504 plan. As far as responsibility goes. My daughter was about 6 when this started. In the beginning of school I came in and we did a presentation on celiac and what is gluten free, why no one can touch her food, etc.. She was fine until this year (3rd) when an idiot classmate kept sticking her hands into my daughters chips and touching her drink. It was solved by moving the girl to another table as she just wouldn't stop no matter how many times she was told. Most kids are OK with it, but you need to teach your child the importance of contamination. I probably overdid it and my daughter is really scared of contamination, but better to be safe than sorry. My daughter actually has a kid in her class for the past 2 years with celiac. I have a talk with the teachers ahead of time and they keep gluten-free snack (I provide) for parties/treats. They send home notes listing the ingredients in any science experiements, etc.. I have to say, my school district has been amazingly accommedating. We'll see what happens as she moves up and has Home ec and chemistry, but for now, they have been great. Please feel free to email me with any more questions as I don't come on the forum too often (busy with work). Good luck!
  2. My daughter has celiac and no one else in the family does. I make our family dinners 100% gluten free - MOSt of the time. My husband complains that when I make food with gluten free substitues - like gluten-free pasta or bread, he gets constipated. I tried going gluten-free due to thyroid issues and felt great for about a month until I started getting really bloated because of constipation -sorry to be gross, just trying to be honest. So now when I make pasta with meat sauce, I will make 2 different pastas - one gluten free and one not. Just be careful to use seperate strainers and spoons to avoid contamination. Otherwise we have steak & mashed potatoes with vegies/salad, chicken with rice & vegies, taco night, etc.. Works out pretty well. I get gluten free deli for lunch (boars head) and we just make sure to put the deli on our plate BEFORE we take out the bread to avoid contamination. We all ahve our own cereal, so no issues there too. good luck.
  3. Quick question, my daughter who has celiac has started to complain about armpit oder. Her pediatric endo said she can start using deoderant/anti-persperant, but it must be gluten free as well as fragerence free as the fragrences can cause irritation/rashes as well as spur on hair growth (she has none yet). Can anyone recommend a good deoderant for my 9 year old to start with that is gluten free and fragerence free? Everything I've looked up online is several years outdated and I want her to have a positive experience. Thanks.
  4. I cook ALL of the holiday meals for our family/extended family. However, I started doing this before diagnosis just because of aging parents. I make mostly gluten free dinners and I tell my daughter ahead of time what she can/can't have. She always takes first and takes plenty as I don't want her taking 2nds in case of contamination issues. When we do go to other peoples houses for dinner, I bring her own dinner, usually something comprable to what is being served...or worse comes to worse, Amy's gluten-free mac & cheese is always a quick meal to bring. Some family members will cook, but have been instructed on putting tinfoil on the grill, seperate utensils with no sauce, etc.. I basically explained gluten as "raw meat" whatever it touches must be washed off and if it can't be, its contaminated. They kinda get it. I have a "mixed" kitchen - both regular and gluten-free as my husband likes his wheat. I label stuff like butter and mustard what is gluten-free and what isn't and we use the raw meat example for washing. Seems to work out fine. We even share a toaster over (SHOCKING!)...we just put down tinfoil for anything gluten-free. As far as playdates go, I feel and most of my friends feel more comfortable with the kids being at my house, just cause I have all the gluten-free food here and to be honest - most of my daughter's friends LOVE her gluten-free food and some of my friends are scared of getting my daughter sick. When she does go over to a friends, I explain to the parent about her celiac and she CANNOT eat anything from her house. I always bring a snack not just for my daughter, but enough for all involved. My daughter knows to serve people so they don't stick their hands in the bag to avoid contamination. She also knows she can always have fresh fruit or carrots if they are washed off in front of her face. There have been times when she'll spend a whole day at a friends, I pack lunch just like school and bring several snacks just in case. Hope that helps. It gets easier!
  5. We're venturing into camp possibly this year. I have the luxury of working from home, so previous summers my daughter did 1/2 day enrichment programs. The first day I spoke to the counselor and explained about my daughter and simply said - it needs to be treated like a severe peanut allergy. I know its not, but it tends to get their attention and usually the counselors are just college kids and only take it seriously if its life threatening. The few camps I've spoke to seem to be very accomodating as they are used to kids with allergies. They've said they will find alternate programming for my daughter when there is cooking, will purchase her pre=packaged gluten free snacks and ice cream. One offered gluten free lunch, but I'm not quite sold on it without speaking to the chef, so I may just send her in with lunch daily. Most of the activities she does outside school don't expose her to gluten. If there is cake for a b-day, she just skips it. Most instructors let me know ahead of time so I can bring an equivelent snack for her. As for eating out...thats still a really tough one for me - trusting someone else to make her food gluten-free with no contamination issues. Major trust issues here. We started out at Uno's and Outback since they are chain restaurants with gluten free menus. While both offer great food, I found Uno's to be a little more conscious of the contamination issue by having a seperate server wearing gloves bring out the gluten free food. My daughter once got 'glutened' at outback because our server had his thumb in breaded shrimp (while putting the plate down) and then handed my daughter her meal. We've mentioned it to the manager and they are 'working on the issue'. Just google gluten free restaurants wherever you are going and you can usually find someplace. Often, small mom/pop places don't advertise - its word of mouth. So ask around at your local ROCK group or celiac support group. I'll often email a group where I will be visiting months in advance to ask for recommendations of local restaurants. Ask to speak to the manager and explain your child can't have any gluten and they must use clean pots/utensils, etc.. Also, we always go out to eat early. I find the later we go, the busier places get and mistakes are made. So we eat out at 5pm. Its tough, but it can be done. We eat out about once a month at a resturant and bring in gluten free pizza about twice a month (we have great gluten-free pizza by us). Sometimes you just have to take a deep breath and jump...
  6. The chances of a false positive are almost none, false negatives are more common. Also, once you have one auto-immune disorder, the chances of having another, increase dramatically (you mentioned thyroid disorder and diabetes). I felt the same way when my daughter was diagnosed - like what else can go wrong, she's got no thyroid (been on medication since birth), joint issues and now this! And people with untreated celiac can have constipation or diahrhea - its not one or the other. Chances are, her instestines are damaged, not absorbing the nutrients, leading to failure to grow or put on weight. Also, not absorbing the fiber necessary and therefore making her constipated. FIrst thing - if her bloodwork came back positive, call the GI dr and insist on getting an earlier appt - play the sympathy card that your daughter is extremly sick, are there any other offices the dr goes to that may not be as busy. Ask to be put on a waiting list for a cancellation. Yes, there always is a wait. I have several friends that tried to get an appt with my daughter's gastro and were told to wait 3 mos. Some were able to be slipped in one month by going to a different office. Yes, she will need to stay on gluten until she sees the dr in case they want to do an endoscopy since her #'s are not that high or redo blood work. However, you don't need to give her a loaf of bread a day. I can almost guarantee once your daughter goes gluten free, her sinus issues will clear up, possibly improvement in diabetes (you must see a nutritionist b/c a lot of gluten-free products are made with simple starches which could affect her blood sugar levels) Just so you know, you're not daughter was born without a thyroid at all and it was her endocrinologist who actually tested her for celiac. We've been on the thyroid medication rollercoaster - the ups & downs, joint issues, hernia issues, teeth issues. Its hard, then with the celiac diagnosis I also couldn't believe it. But I did a ton of research. Celiac is genetic, so if you dh has it, chances are she does too. No one in my family has celiac, but we've never done the genetic testing, so who knows. Also, a gluten free diet actually helps people with thyroid disorders as gluten acts as a trigger for the auto-immune system. In the first 6 mos of going gluten free, my daughter's thyroid medication was cut from 80mcg to 50mcg because all the sudden her body was absorbing the medication. You will see a miraculous difference. Please feel free to message me with any questions. Yes its, scary, but once you know whats definatley wrong and can fix the problem, she'll get better real fast.
  7. First - it is not your fault! Whomever was left in charge was responsible for giving your son gluten. Had it been a severe peanut allergy, would they have not said anything??? I found water and sleep are the best medicine for being "glutened". He needs to get it out of his system to feel better. I know its not a medical treatment, but the only thing that I found helps is pepto, tons of water/broth and naps. Sometimes ginger candy drops. To prevent something like this happening in the future: How much have you taught him about celiac and being gluten free? My daughter is 8 also and has been gluten free for almost 3 years now and knows that she doesn't eat anything that mom hasn't given her. People have made her gluten free cupcakes and she will still refuse to eat them as she tells them "you don't know how to avoid contamination" then proceeds to give them the 'butter example' - when you use butter on your toast, you leave crumbs in the butter - that is gluten contamination and can get her sick. People are usually shocked at this coming out of the mouth of an 8 year old and only a few are offended, but she needs to consider her health first. The only snacks she eats at friends houses (I usually provide a gluten-free one for all the kids) is fruit and carrots and only if it's washed off in front of her eyes. Teaching him to be responsible is the best thing you can do for himself and for you. I keep thinking, what am I going to do when she goes to college. The kids need to learn now so as they grow older and are more independent (being left alone at parties) they can assert themselves or decide what they can or cannot eat. If they make a bad choice, they pay the price. We never want to see our kids sick, but in a way, its the only way they'll learn.
  8. I know this may be long - but for all those struggling or just starting out...please read, I guarantee it will make you feel better. I think back 3 years ago, my daughter's stomache was bloated, she hadn't grown in 10 months, she had dark circles under her eyes, belly aches and BM 5 times a day. When I first got the call from my daughter's doctor saying she tested positive for celiac and I needed to see a pediatric be honest, I didn't believe her as no one else in the family had celiac. The first thing I had the gastro dr do is do another blood workup, insisting that there must have been a mix up in the lab. Sure enough, it was positive. We chose to skip the endocscopy, going straight to the gluten free diet. Our gastro dr was OK with that, saying he was 98% sure the endoscopy would come back positive anyway, with the outcome being a gluten free diet. After freaking out, reading every possible book and piece of information I could get my hands on (BTW-thanks all in this group who helped me out), I dove into the gluten free lifestyle for my daughter age 5 1/2 at that time. I treated gluten like raw meat - washing my hands and counters constantly to avoid contamination. I did not buy seperate dishes or pots, but I do have a seperate strainer for pasta (those small holes are just too tricky). 6 months later her bloodwork showed her anti-bodies were within normal range. The doctor was SHOCKED at her progress, saying people always slip up, cheat, contamination, etc.. But was very proud of her (and me) for sticking to it. After 1 year of my daughter being gluten free, I finally got the courage up to go out to eat with her. I felt, I couldn't have her living in a bubble. So far, we've probably eaten out almost 100 times and she only got sick once and we saw the servers thumb in breaded shrimp before he handed her the food. We made sure to tell the manager about that one immediately. Anyway - 3 years later, we just got back from the pediatric gastro dr and her #'s are still fine...she looks healthy and is doing just great. My daughter loves being gluten free. The dr asked her - do you ever want to cheat on the diet? She answered "no, why would I want to eat something that is going to make me sick?". I'm so proud of her. I've made sure to teach her about contamination issues, how to read ingredients and what to look for. She is very comfortable googling a company or calling them to ask if their product is gluten free. She even teaches her classmates about celiac and often shares her gluten free snacks with friends. I know this may not be the norm, but I remember being completely freaked out when my daughter first got the diagnosis. I just wanted to let parents out there know that it does get better. yes, we've dealt with family not being compassionate or understanding, making jokes like "don't touch that fork, it could be gluten". I've had to threaten to cut off contact with family because of that. Luckily, my daughter's school is great (yes, its public). She has a 504 plan where she gets gluten free art supplies (even though she doesn't get a skin reaction to gluten) and she buys a gluten free lunch at school 2-4 times a month (yes, I said she BUYS A GLUTEN FREE LUNCH AT SCHOOL - shocking!). They prepare her lunch seperate from everyone else, all I have to do is give them a heads up a week ahead of time. The school nurse keeps her snacks for class b-day parties and the school even offered to reimburse me when they made gluten-free gingerbread houses and I supplied gluten-free supplies for my daughter. I feel I'm probably jinxing myself by posting this. But I wanted those parents out there that are scared, struggling to know that it gets better and easier. You start with the flourescent stickers on the gluten-free food in the fridge and before you know it, you're making gluten free thanksgiving for the whole family! Please feel free to respond and ask questions. I just ask for no negative comments...I know some parents are going through a lot worse, dealing with other issues as well (my daughter has no thyroid) and I always think of you when times are hard with my daughter. Good luck to all of you.
  9. my 8 year old has celiac, was diagnosed when she was 5. We have not had the genetic tests done in the family (too expensive $), but we've all been tested for celiac and no one in the family has it (parents, grandparents, aunts). I know there is a genetic componant to celiac, but not always. My daughter has a thyroid problem and once you have one auto-immune disease, your chances of having another go up dramatically. Do not rule out celiac just because there are no genetic markers. Have the blood test done for celiac and go from there. Good luck.
  10. My 8 year old daughter is doing a research project on Celiac Disease. She is in the gifted & talented program at her school and they are required to do an Independent Research Project which will result in a paper, oral presentation for her class and a presentation in from of her peers grades 3-8. She was diagnosed with Celiac at age 5 and has done wonderfully on her gluten free diet. While she understands the basics - eating gluten will make her sick. She now must learn about the science of celiac disease...the cause, effect, symptoms, future cures, etc.. Can anyone suggest any child/teen friendly publications - books, website, etc.. that she could use for her research? She has already set up an interview with her pediatric gastroenterologist, but she needs to site book & website sources as well. She plans on creating and publishing a kid friendly book on celiac disease and a cookbook as well. So when she gets to that point I'll let you all know as you all have been so helpful in answering my questions and offering support, especially in those first few overwhelming months of starting gluten free. I would appreciate any help/guidance anyone can offer. THank you.
  11. Best way to answer you is to tell our story. My now 8yr old was diagnosed with Celiac at age 5 via blood work (symptoms - frequent BM, lack of growth, big belly). The pediatric gastro wanted to do a scope - saying it was the "gold standard" of diagnosing celiac and it was the "norm". When I heard they put kids out completely, not a twilight sleep like adults, I got worried. I asked the dr what the outcome would be if it was positive - his response was that 98% of time time, the scope comes back positive for celiac when the blood work is positive and the result is having to go gluten free, then they recheck the bloodwork in 6 months to see if the antibodies have gone down. We suggested to him that she just try the gluten free diet and if her #'s go down in 6 months at the bloodwork, would that suffice as proof. He completely agreed with us and didn't fight us at all not doing the scope - he said better #'s would be proof but if it didn't improve he would have to scope her. 6 months later following a STRICT gluten free diet - no slip ups, no sneaking food, no contamination, her #'s were PERFECT. He said he has never seen anything like that - that there are always slip ups the first few months...he didn't realize he was dealing with an overly controlling OCD type of parent and child We've followed the gluten-free diet with no problems. My daughter loves eating gluten-free, doesn't miss any food and realizes she's eating healthier than other kids. She's very smart, so her level of understanding is much better than other kids her age that try and sneak food. SHe has had a couple of "glutening" incidents due to contamination of potato chips at a party (other people were eating from it too) and at a restaurant. Otherwise, she's great and our family has gluten-free dinners every night (just easier to make). Otherwise we have a mixed household (gluten-free & not gluten-free) and just are very careful not to contaminate things - butter and condiments are labeled gluten-free or not, etc.. Good luck
  12. I'm hoping some experienced parents can help me figure this out. My 8 year old daughter was sent home sick from school yesterday. The school nurse said that several kids were sent home sick with a "quick stomach bug" that is going around. This was at 3pm (she got sick at about 2:30). She was throwing up about every 1/2 hour, fell asleep for an hour and a half, threw up a few more times and was done with it by 6pm. No fever, no diahrea....just severe stomach pain and vomiting over the course of about 3 hours. Here's my concern: My daughter bought lunch at school that day at about 12:15. The cafeteria has 1 person prepare a special gluten free meal for her that is stored seperate from the other kids. They do not use the same equipment because of contamination issues. SHe has bought lunch about 6 times in the past few months and never had a bad response - everything has been perfect. She said that she had a new type of chicken strip (usually Bell & Evans). Her previous reaction to being "glutened" about a year ago at a party eating chips from the same bowl as everyone else (the chips were gluten-free, but everyone was having bread) was vomiting for a few hours after ingestion and then being fine. This most recent experience seems to mimic it exactly, but the fact that a bug is going around makes me question it. What are your thoughts? I'm going to notify head of food services just in case so they can check the ingredients of this new chicken, but I don't want to be accusitory as it could just be a bug. I wish there was a quick diabetics have for their finger that could tell parents whether its gluten or not. Thanks for your help.
  13. My daughter is going into 2nd grade and I've spoken to the teacher about her celiac and the precautions that need to be taken, not just with food (she knows what she can/can't eat), but with contamination, school supplies (glue, paint, etc..). The teacher was very nice and concerned and asked me to come into the class on the 2nd day of school to give a little talk to explain it to all the kids. Any suggestions? I want to keep this brief, like 5 minutes. Explain that its not contagious, what happens when she gets sick, what she needs to be careful of. I'm also making gluten-free cookies so they can see/taste that there is no real difference (I can just see one of them yelling at her when she eats a sandwich, not knowing that it is made with gluten-free bread). I want to also hand out a worksheet/coloring page or puzzle. something for them to be able to bring home...any ideas/links for me to check out? I'm glad the teacher is being so open to this and our school has been wonderful about it (offers gluten-free options for lunch). Thanks.
  14. My now 7 yr old was diagnosed a year ago at age 6 was also almost completely asymptomatic..just a few tummy aches and no one in the family has celiac, so it came as a complete shock when the blood work came back positive. We decided to skip the endoscopy and just try the gluten free diet and then recheck her bloods - which 6 mos later were completely normal...that was proof enough for us and the dr. We never cried over what she can no longer eat...we've turned the whole thing into such a positive experience that my daughter has wonderful self esteem. Instead of being said that she "can't eat that", she says "I eat healthier than all my friends". Your kid will feed (not literally) off of if you are depressed and sad, they will be too. If you make it a positive experience, they will feel the same. For us, I threw myself into cookbooks, support groups, talking to people here, local health food shops, dieticians to gain as much info as possible about food. I've turned my regular favorite recipes gluten free for the whole family - ribs, meatloaf, fried chicken fingers, pancakes and NO ONE can tell the difference. WE just had her b-day and the kids loved the gluten-free cupcakes, couldn't tell (all betty crocker gluten-free mix). Being that our kids are the same age I would LOVE to give you a ton of ideas about food that yours make like so feel free to email me direct. Most important is to STAY POSITIVE. WHile I can understand the persons point of view feeling like it was a miscarraige, I felt it as a blessing..our whole family is eating much healthier now...less carbs (so we've lost weight), no more fast food and we spend time together food shopping and cooking. It's really been great for us that she had to go gluten free. Good luck and feel free to send me a message direct. Michele
  15. Just need some help/feedback/examples. My 7 year old daughter was diagnosed last year with very few physical symptoms (tummy aches, frequent BM, lack of weight gain/growth). We've been gluten free for a year and she's done fact after 6 mos her #'s were back to normal. In the past year, she's had accidental glutening perhaps 3 or 4 times. It seems each time she has a different time was a rash, another time diahhrea and last night it was throwing up. Is this normal to have a different response anytime she is "glutened"? does it depend on what or how much she's consumed? As we're not sure of the culprit as we believe the 3 accidents were purely contaminations (eating chips from a community bowl, eating out, etc.) and not outright consumptions, we can't be sure of the amount/type of gluten she had. Just curious as I wish I knew if there was a consistancy to her symptoms or if it always changes. Or perhaps it was a stomach bug last night rather than contaminated chips. Thanks.