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
I know that there are lots of great ideas on the other links, but here are a few from our house. My daughter loves some of the GoPicnic gluten free lunches -- they come in little boxes about 350 calories, mostly organic / preservative free, really healthy options. Of course her faves are the ones that are more junk-foody. The one called Turkey Stick Crunch is her favorite. It comes with a turkey jerky stick, bbq popchips, a fruit leather strip, a seed & nut mix, and a small chocolate. They're high-priced, so we just keep them on hand for food emergencies. I leave one in my office, one in the van, and some in the house, but they're not for everyday.
For every day lunches, we do ham & cheese on toothpicks (rolled up), a couple of pieces of fruit, some carrots, a yogurt, and a drink. Sometimes a bag of chips. My daughter never has liked bread, so she usually passes on the gluten free breads, but occasionally she wants to take a grilled nutella sandwich. Sounds strange, but it's delicious. Carrot sticks, celery sticks, and anything else that can be chopped small and arranged cutely in a lunch box are great. I overpack her lunch because she's always starving after school and I want her to have some options left to nibble on before we get home.
I'm sure it varies from location to location. I've walked out of restaurants when I felt that they wouldn't be able to handle the food to my satisfaction. We went in at an off-peak time and when the host asked if he could help us, I told him that I wasn't sure and that I had some questions about their gluten free menu and how they handle gluten free food. He pulled out the menu, went through the procedures, told me that the bun was pre-made and pre-wrapped in plastic and that they open them as needed. I don't know that they would have taken the time or paid such close attention if it was noon on Saturday or some other busy time.
Our whole family has been traveling for the last week, and we brought most of the food with us and prepared more on the road. Even so, we found three occasions where we risked dining out, and they all worked out okay. It's the little things that get you all excited after living such a restricted lifestyle, but lemme tell you what we found.
1) A non-chain pizza place - VIP Pizza - at the Hammerhead Marina - Grand Lakes area of Oklahoma. Went in for the restroom, glanced at the menu, nothing gluten free, so I asked the manager if they had any gluten-free options. He told me that his friend has celiac and helped him develop a procedure and that they do a totally safe gluten free pizza that has never made his friend sick. I was so shocked! We came back that evening -- all 16 of us -- and at the pizza. Success! The pizza was wonderful and so were the staff members. I nearly cried I was so happy.
2) Red Robin cheeseburger and fries. Normal have kid food for a change. Love that they have an "allergen" fryer that never gets used except upon request for gluten free or whatever allergen. They have great procedures in place and my daughter has maybe never enjoyed a burger and fries that much before. We live in a very rural area, so this was exciting for us, lol.
3) Chick-fil-a -- Can't say enough great things about the service, attention to detail, lengths they went to to reassure us that they would handle everything properly. Daughter got a regular grilled nugget kids meal with fruit and waffle fries.
I know that all of these are "junk food", but it's so nice to have some options! I've been hesitant to try restaurants, but our experiences over the last week have been wonderful. Just wanted to share!
Okay, well, the visit with the doctor was okay, but I didn't feel like I could speak freely in front of my daughter, so now I'm waiting on a call back. The good, no GREAT news is that now at 6 months gluten free, all her serology results are back in the normal range!! Her TTG was ridiculously high in December, and now it's 3!! that's right, three! Whew, I'm glad all of this gluten-free living is working. I was so afraid of bad results.
I signed up for a webinar (I'll try to paste it below) on supporting kids living with chronic food allergies. I know it's not a food allergy, but I hope to glean something good from it. Meanwhile, we are researching child psychologists and trying to get recommendations in the region. We need to find somebody soon that we can start meeting with. At the very least, we need help with communication.
Supporting Children, Adolescents, and Parents in the Daily Management of Food Allergies
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I have been there and know what you mean. Some days (and occasionally nearly ten years later we still have times like that) I just felt that I had nothing left to give! My celiac daughter was so sick the whole time I was nursing her and I had to go through an elimination diet. I ended up eating no dairy or beef and she got some better, but we were clueless about the wheat connection then. HANG IN THERE! Get on this board when you need some encouragement! My daughter was so sick and fussy that I babied her too much, and by the time she was three we had created a monster. It was hard for us to transition to being "tougher" on her, but it saved our sanity. I figured out around age 2 or 2.5 that she could have a meltdown in her room where I couldn't hear it just as well as she could with me holding her! ha. Sometimes just give yourself a little break from it all. It really won't hurt her to cry it out a bit in her room while you take a shower or whatever you need to do for your own sanity.
She ACTS like a bullied child, but she's not! She usually wants me to stay and watch her activities, and the other kids really like her. She has spurned their invitations and to my perspective been rude to other kids, and then tells me that they don't like her. What is this way of thinking?? She is very sensitive and very competitive and genuinely gets her feelings hurt if she's not the fastest, strongest, and best at everything. I'm wondering of part of quitting is because she's not the best? Much to think about and observe. I'm holding off on taking further steps until we see the ped gi.
No worries! It's not hijacked - it's shared information!
It's been a long week in which my sweet daughter refused two parties, quit gymnastics, worked incessantly in the garden and swam like a fish with her sisters. I didn't fuss, didn't push her to break away from the family. I'm feeling that she needs time at home to be nurtured. My biggest fear is that, when summer ends, she will be so withdrawn that it will be impossible to get her to school. Anyway, we have started a back and forth journal (sort of -- I wrote and now I'm waiting), gotten the names of a couple of recommended doctors, restarted vitamins, and eaten almost exclusively preservative-free real minimally processed foods. Onward and upward.
Not sure how I gave that impression because I am definitely interested on getting help. A pediatric therapist might be very good for us, but we are quite far from any services like that. I want to ask the GI Doc for a recommendation when we go back in a couple if weeks. I don't even know of anyone whose child is in counseling of any kind in the rural area where we live.
I'm thankful for all the suggestions. We have no improvement except in my attitude.
She is getting everything she wants.
How can you tell the difference between a spoiled brat that you've given in to too much, and a sick child that needs additional nurturing in order to feel safe in the world?? This parenting gig is TOUGH.