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 went through something similar. I grew up with stomach aches, unexplained pains, severe anemia, hair falling out. At one point in high school I was on pills to reduce the acids in my intestine because of the sever abdominal pains I had. None of my friends can remember a time when I didn't complain of not feeling good after eating.
My daughter, who is diabetic, had testing done. Her endocrinologist considers testing for Celiac Disease routine. Sure enough, her antibodies were astronomical. Her endoscopy and biopsy confirmed. Since then, another daughter was also diagnosed. Since I had two out of three daughters test positive, I went totally gluten-free in our house. As a result, I don't hate food. I have started to lose weight, and my anemia is not as bad - even without the supplements. I don't have stomach aches anymore, and I look forward to riding my bike because my legs aren't in extreme pain. My depression is not as severe, and my hair doesn't fall out like it did before.
If you know in your heart that this is the problem, you don't need a doctor's diagnosis to go gluten-free. Do your body and your family a favor. Best wishes to you if you decide to commit.
It has occurred to me that my daughter might have been Celiac from birth. From day one, she was emotional, hard to reason with, impossible to deal with. Highly intelligent, but near failing because she refused to do homework. I couldn't wake her up in the morning without a fight. Getting dressed, brushing teeth/hair, taking showers - a constant fight. I would have to start nagging her about two hours before when I wanted her to shower if I wanted her bathed at night. For the first two years of her life she had a big bruise on her forehead because she would bang her head on whatever was closest if she became upset. And not gently.
Since going gluten-free in December, her attitude has changed. She's started to learn her chores instead of throwing a fit because "she doesn't know how to do it" (even though I constantly coaxed her by telling her I would teach her). She does her homework without prompting. She's gone from struggling to get C's because of not turning her homework in, to all A's. She takes a shower right when I ask, even when she doesn't want to. She remembers her vitamins in the morning (deficiencies from being glutened for so long).
This is beside the health issues. She had gone from above 80th percentile down to the 15th in height and weight. In third grade she was one of the smallest children; now she's right about in the middle. Her height and weight are up into the 60th percentile now, and that's after only six months. She's gained four inches since January. Her feet have sprouted two whole sizes. She went from a size 8 to a 12 - and she's very lean. Her nickname is Bruiser. Being gluten-free has made her a healthy, happy child. To me, it borders on miraculous.
I would go with checking at school. It's probably easier for the 13 y.o. to comply because older kids don't normally have parents send snacks to school for birthday parties and such.
If you haven't done so already, go to her school and talk to the principal and also any teachers your daughter has. They all need to be aware of her situation. Also, make sure that kids at school do not touch anything she eats, and she can't touch anything her friends eat. It could have gluten on it. Her desk should be wiped down after each time the class has snacks, in case her friends touched her desk while eating. My daughter's school calls me when there are surprise treats, and they send notes home for planned parties, listing everything they will have to eat with ingredients. I then have to okay anything my daughter is allowed to have. I get a lot of phone calls, lol.
Sounds funny, but no lip kisses with gluten-eaters unless they've washed their mouths first. No sharing lip balm or lip gloss. Keep her toothbrush away from toothbrushes that gluten-eaters use. I bought my daughter a toothbrush case to use, until our whole house went gluten-free.
My daughter is super-sensitive, so we've learned the hard way. I have to say, she makes me so proud because she even remembers things that I sometimes forget. She gave away a whole pack of Tootsie Rolls because her friend touched the package while eating lunch.
First, document EVERYTHING. Take pictures, make a log, recordings...anything to keep records of her symptoms. Gather all the doctor's files you have in regard to her positive blood tests. Yes, take pictures of her poop. Date everything.
Then, contact the free legal office in your area. If they won't help, start contacting every family lawyer to plead for them to help you pro bono.
I was hoping to take my kids somewhere new and decided to give Don Pablo's a try. I couldn't get on the internet because of the power outage and I couldn't cook, so I winged it.
When we got there, I asked firsthand if they had gluten-free options, to which they replied that they did. So we waited for our table and when we were seated they handed us the menus. I was so impressed that their gluten-free menu was actually a professional-looking menu and not just a printout!
I started looking at the menu, and a very large disclaimer at the bottom states that yes, the food on this menu is gluten-free, but is NOT cooked separately from any of the fryers or prepared on clean surfaces.
Okay, what's the point of offering gluten-free food if you gluten it before you serve it anyway??
I am going to write a letter to them asking about their procedures, but I don't expect much.
I hate to say this, but even with a 504 plan and the schools wiping the desks/tables down, your kids will still get glutened. I say this because I do have a 504 plan in place and my daughter gets glutened at least once a week. Thankfully she doesn't get sick, but her sugar drops dramatically so it's still a problem.
Have you seen how the tables are wiped down? In my daughter's school, they use one cloth and a spray bottle. They spray the table with what I hope is a disinfectant, and wipe down the table. Crumbs are indeed left behind - I saw them.
I had to tell my daughter to get a CLEAN tray (one that was not from the top of the pile) from the kitchen to put her food on. Originally she was just using the plastic baggies that her food was in.
I would suggest getting a rubber mat that your kids can use, then roll up and bring home for cleaning. Or, send some wipes to school with their lunch so they can wipe the table/desk down in the area they are in, if it's not in the cafeteria.
In all honesty, if they're not eating in the cafeteria, a 504 plan will not help. It is not the school's responsibility to walk around in front of kids to clean their paths. If a clean cafeteria is provided, that's going to be where the school says your kids need to eat. Remember - reasonable accommodations.
It has also prompted me to consider changing my major, from computers to Dietitian. I was thinking of becoming Head Lunch Lady at a school because that is also a place that needs some major education. None of my kids can eat at school because they have no idea about gluten or cross contamination. I know a school is not some place that really needs to consider the dietary needs of all kids, but they should.
We eat out about twice a month. It's only been since December that I had my kids' diagnoses though. We have actually been out more frequently than twice a month as of now, but now that I'm learning more creative things to cook, we are going back to our regular thing.
We've eaten at Buffalo Wild Wings, BD's Mongolian Barbeque (they will cook yours in a separate area in a clean pan), Red Robin, Applebees, Cheeseburger in Paradise, Golden Corral (buffet, tricky but doable), and Ruby Tuesday.
Ruby Tuesday was the most gluten-free-friendly.
I refuse to eat anywhere that has "Coney Island" in the name. All I see is sloppiness and lack of education when I think of them.
I want to make my kids confident that they can handle this disease, and not let it handle them. The more they are exposed to tricky situations that come out positively, the more it reinforces the fact that this isn't a lifestyle-ending thing. If it comes out negatively, you know what to avoid the next time.
My advice: go for it. You're giving in to the disease if you let it control what you do.