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 FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan 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-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs 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 BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
No, actually it is true. I suppose it shouldn't matter whether or not you believe me, but my original question is about elimination diets. She has a gluten reaction, maybe once or twice a year, and that's typically not my fault. That's really good for the past six years so obviously I've been doing something right with her diet. For her to be sick daily for the past week and a half is odd. My understanding has always been that celiac disease is due to an intolerance from wheat, barley, rye and sometimes oats. She has never had a problem with oats so believing that Lucky Charms is okay is not a huge mistake on my part. I have pulled it since we're not sure what is going on, but she had one bowl today, not daily for the past week and a half.
She has received a great education in her diet. She googles if she's not sure, reads books about her diet and attends camps for kids with celiac disease. If anything we are overly picky. She is capable of making mistakes, and so are we, but after the first day of being ill, we were double-checking. Nothing has changed with what we feed her.
We are all actually really good at this diet. Lucky Charms is something that years ago I was told was okay. (And it's not something any of the kids get on a regular basis, we don't typically use cereal). When she was learning to read, gluten was one of the first words she learned. We told her if it said gluten free she could eat without checking with us. At her age, she educates others on what she can eat. Mostly, we eat meats, vegetables and fruits. My husband and I do the shopping and check. She double-checks.
We buy gluten free bread and noodles. We make most of our own sauces and jellies. We have dedicated toasters. There's not much to err on with her food. We've been double-checking for the past week to see what we could have missed, but I'm coming up blank. I'm still going through our pantry and I can't find anything. Her foods are the same as they've always been.
argh! Six years on the diet and I'm STILL trying to figure things out. After some googling, yeah, the Lucky Charms aren't okay. I guess I became too relaxed because she had no problems with oats (we purchase the ones that are certified gluten free). We don't eat Lucky Charms often (actually I bought them for me, lol) so that's not what's caused her problems in the past two weeks, but that can be what's caused her problems today. So, dairy may still be the culprit.
The Lucky Charms we only started eating today. But...we've always eaten them. She doesn't have problems with oats. Was there another ingredient that makes it not gluten free? (Regardless, I'm taking her off of them until I know for sure).
Yes, the problems have only been for two weeks but they're incapacitating. She cries, moans in pain and usually can't get out of bed or off the couch. We homeschool, so school work is slow but still continuing. She ate a banana and water for breakfast this morning because she had a theatre audition. She did get the part she wants, but now we're under pressure to get her better, quickly, so she can attend rehearsals. And honestly, the pain is now at a point where we can't control it with her medicine for cramping. So, I think a doctor visit is quickly heading our direction.
I'll try the probiotics and see if that helps any.
That was my first thought as well. She hasn't had any dairy today but is still sick with D and cramps. Today she had a banana and toast with water for breakfast. She had boarshead lunchmeat and grapes for lunch. She had Lucky Charms (no milk) for a snack.
I'm not sure if it would take a few days of no dairy to stop her symptoms? We've stopped the dairy for now.
My daughter is 12 years old and has been gluten free since she was 6. She strictly follows her diet and with very few exceptions our household is gluten free. She's considered very sensitive but not super sensitive. The only thing she's ever had a problem with, other than gluten, has been pork products that are Publix brand (I have no clue why, but bacon, pork loin, etc make her sick).
For the past week and a half, she has become sick with stomach cramping and some diarrhea nearly every day. I believe that I've read that people with celiac can develop other intolerances and I think this may be what is happening.
She has always tolerated dairy and loves to drink milk. Can someone give me some tips on how to start an elimination diet? Do I start her on just rice morning, noon and night? Or just leave out one food group every few days? Or a food journal to look for patterns? What is the easiest and most efficient way to get to the problem?
Also, we have a family history of Crohn's. Should I take her to the doctor for more blood work? Thanks for any suggestions.
Thanks for all the replies. We're home! We came home yesterday and I immediately went to the store. It was one of those trips where I had no list or menu in mind. I had little time to plan and just bought meat, veggies, fruit, milk (whole and full cream) and cheese. (We live 30 minutes from a decent store).
I am actually grateful that the kitchen staff refused to guarantee it. I think it's ridiculous, but I'd rather people be up-front and tell me they can't do it than to just guess at things. I do think it's possible to cook gluten free though. Aluminum foil and steamer bags can do wonders as long as the prep/cutting area is safe. It was an odd situation - the doctors and dieticians maintained that it could be done, the nurses were uneasily caught in the middle and relaying the concern of the kitchen, and the kitchen staff personally told me that they weren't familiar with what to fix and for me to please double-check it. (Most of the problem was due to concerns about preparing - my daughter is sensitive to cross contamination). No matter who spoke to her, my daughter's answer was always a polite refusal. (She wasn't upset or mad, she simply refused to eat unless it was sealed and she personally checked the ingredients).
The other frustrating thing was that I never knew what was going to come up on her tray. (I kept ordering, hoping for individually wrapped things. I would eat her tray if it was edible. The food there is not too bad, but this was bland, bland, bland.) We went in on Friday, but didn't receive meals until Saturday (through Tuesday). Some days chocolate milk was okay, other days it was not. (She refused to drink it anyway since she didn't recognize the brand and she's been glutened by chocolate milk before). Ranch and Italian dressing caused confusion and some days they would send one, other days they would say Ranch wasn't safe and would only send Italian. I always asked for pudding cups and margarine, but neither was determined to be safe. If they weren't sure if an item I circled was okay, they marked it off and sent the tray without it. One meal was only steamed cauliflower and a salad. The gift shop had cheese popcorn and yogurt. We lived an hour away from the hospital, so I couldn't easily leave.
Apparently, during removal the appendix ruptured and that is what they are blaming the extra pain/discomfort upon. She is currently pain free but moves slowly and carefully. She is 11 yrs old and weighed 58 lbs when she went in. She now weighs 54 (although I'm sure some of that is from mild dehydration which I could tell she had when we left).
She is drinking a lot now and my husband made spaghetti and garlic bread for dinner last night (she ate about 1/3 of it). I have wonderful things planned to cook today so I feel good that we're on the upswing. I still plan to write a nice note and let Children's know of my experience. If nothing else, they should be able to keep frozen meals on hand or shelf-stable soups/food that could be safely prepared.
Thanks for everyone's comments. I appreciate them and am SO happy to be home.
Yes she can eat those. She has had applesauce. It would be good to have actual food though. They want her to have a bm before leaving. I plan to talk to Dr today and tell him she wont because she wont eat until we are home. She wants food but I cant get what she wants here.
Fri my dd was not feeling well. Ended up in er with appendicitis. Appendix removed sat morning. Afterwards the nurse said the cafeteria would not guarantee a gluten-free meal. (We are at children's hospital) . Dr and nurse spoke with them and they said they would do it but no guarantee. Dd wont eat but I sent a friend to store for me. So frustrating!
She still has pain and cannot walk. We hoped to go home today but cant until shes better. Is there any connection between celiac disease and appendicitis or difficulty recovering from abdomen surgery? I am desperate to get home (an hour away) so I can cook again.
(Sorry typing on my laptop which means I'm prone to mistakes)
Karen - her carrying medication (without a label) was what bothered me. I wouldn't want anyone to see it and think she is carrying something illegal. The medication is actually fairly harmless (IMO). My other daughter takes one daily in the morning to keep tummy aches from developing (suspected IBS). So, yes, I do trust her to take it with her and not take it unless necessary.
I will probably ask the pharmacy to give her a small dose/bottlt to carry as another poster suggested. I may go ahead and ask her GI to write a small note verifying she has Celiac Disease as well.
I was told IBS basically came with a Celiac diagnosis although the comment may have been directed towards my child only. She takes it due to severe cramping that is literally crippling during a celiac reaction.
My soon-to-be 11 yr old daughter has Celiac. She's great with her diet, very strict on what she eats and watches other people like a hawk if they are preparing food she will eat.
Occasionally (a few times a year) she accidentally ingests gluten. The reactions are ugly - vomiting, diarrhea and cramping so bad she literally can't straighten up.
She visits other family members often and usually carries a little purse with a gluten-free snack in it. She also carries her own hand sanitizer (since other kids touch other bottles), band aids/neosporin. She wants to carry a few of her prescription pills (hyoscyamine) with her in case she gets sick. I think it's a great idea since it allows her to treat her own symptoms rather than frantic calls to me to quickly bring her stomach medicine. Realistically, she probably won't need it. However, relatives have asked if she could bring it "just in case".
My concern is whether she could get in trouble for taking prescription meds (not in a bottle) around with her. (Not at school, but to VBS, church, other's houses, etc). Can I get a doctor's note for her to use validating her need to carry medicine? Thanks
I let my 10 yr old cook although it's a progression of things (for example, she can use the oven independently, but not the stove). She first started by doing box items, cake/brownie mixes, no bake cookies, pudding, etc. We don't really use cookbooks a lot (although I love to look through them for ideas). We find our favorites and she uses our recipes.
She made dinner last night from a pork loin (marinated in mojo sauce), steamed rice (from a rice steamer), and steamed veggies (steamer bag in microwave). My littlest (who is 7) is making chili in the crockpot tonight (we have our beans cooking now and she'll add items I have prepped for her).
I think it's good to teach kids to cook. Simple things first, then more complex. They can always help by measuring, washing food items, etc.
My daughter has a diagnosis of failure to thrive due to celiac disease. (She is 10 yrs old by the way). She is considered very small for her age though she continues to grow (height and weight) in small increments. She has been tested in every way possible and her doctors have decided that she's simply meant to be small. Though she's small, she's very bright (gifted), and athletic (she plays both soccer and does cheerleading - she also takes karate). She also participates in Children's Theatre and just received one of the medium sized roles (which is a huge deal for her) in an upcoming musical. There's nothing wrong with being small. If you are still concerned after a few more months have gone by, talk to your gastro about it. Good luck!