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've been dragging my feet on dealing with possible non-food sources of gluten. My daughter had chronic mild stomachaches, which have mostly cleared up since going gluten-free, and she has never had a noticeable gluten reaction since then.
Because she doesn't react (or at least not in a way we can clearly see), it's hard to know how careful we need to be. Do I need to worry about things like Children's Tylenol/Advil, shampoo, sunscreen, etc.? I know the official answer is "call the manufacturer," but did you really do that for every product your child uses? Is there a way to know which ones to be suspicious of?
Whenever I go there, I stock up on cookies from the frozen section. In our store, there are some gluten-free things in the regular freezer section, but there's also a whole separate gluten-free section next to the cake counter. My daughter loves the star-shaped lemon cookies.
I also sometimes splurge on Udi's blueberry muffins, if we happen to be out of the ones I make myself.
(OP here...) My daughter is not allergic to dairy or eggs, and her gut seems to tolerate them fine. But based on her blood testing, the immunologist said she reacted to them very slightly (still within the normal range, but not zero). So he recommended significantly reducing them. It was actually not a celiac or allergy thing at all, but rather an attempt to calm her immune system to see if that might help her anxieties.
We did try for several weeks after I posted (the original post was 2 months ago), but without being told to absolutely cut it out, it is a slippery slope and it's largely crept back in to her diet. I never made any changes to my baking. The only change that really stuck was that she's now eating soy yogurt (which she likes) and not eating scrambled eggs (which she didn't like anyway). But she said she feels exactly the same on dairy/eggs vs. off them.
I don't think it's realistic to be with her always. Yes she is only 3, but my daughter is 7 and she still sometimes eats things she isn't supposed to. (Luckily for us, she doesn't have any obvious reaction -- although that is also partly why she doesn't always remember to say no.) How do you decide when they're old enough? And being with my child all the time wouldn't have even been an option for me when she was 3 if she had been diagnosed then, unless I was going to quit my job.
I'd talk to the teacher and whoever at the city is running this program, and make sure they know how serious it is. But I agree that threatening to sue will probably not do any good, and I agree with not adding to the rampant fear of lawsuits. That could lead to the city not allowing any children with food allergies into their classes, just to cover their b*tts.
I hope your daughter is feeling better by now. What a nightmare.
Ironically, my daughter's at a birthday party right now, and just as I was typing this, the birthday girl's mom called to ask me if my DD can have pizza and cake. Um, no.... And I certainly think my DD would have said no to that. (We sent her to the party with extra snacks and treats.) But I'm glad the mom thought to call, at least.
We have a mixed kitchen, and it sounds like you're doing everything we do. My guess would be that either he's just sick, his tummy hurts for some psychological reason (moving to a foreign country for 6 months would be stressful for anyone!), or he got glutened somehow outside of the house.
That said, I really have no idea if we're glutening my DD, because she doesn't have any noticeable reaction. But I can't imagine how we (or you) could be much more careful without making the house completely gluten-free.
My 7 year old DD was diagnosed last spring. She has been gluten free for ~7 months, and now may need to go off dairy and eggs too, at least for a few months. (Her immunologist said she doesn't have to be completely dairy- and egg-free, but to avoid eating them straight up or in large amounts.)
She subsists largely on Amy's boxed rice mac & cheese. The only dairy-free rice mac & cheese I've found is also Amy's, but frozen. Does anyone know of any alternatives?
I know we need to get her eating more foods, but we also need a reliable fallback food... Just about everything she eats contains cheese.
My DD is not allergic to eggs and they don't bother her stomach, but her immunologist just told us to take her off eggs at least for a few months to give her immune system a rest and help her gut to heal. She is very relieved because I had been making her eat eggs (again, for the protein) but she really doesn't like them.
My 7 year old DD has been gluten free for ~7 months. She just had her follow-up appt and her tTg was still high, so we obviously need to figure out where the gluten is coming from.
Her iron was also low (I don't know what the number was) and the doctor told us to give her a supplement. Any suggestions? I bought Floravital at Pharmaca today because that's what they suggested, but I worry that she's going to hate it. (If it does work out well, I see now that I can pay a lot less online...)
The only other thing I've found for kids is the Flintstones multi with iron. Are there other options?
My 7 year old daughter was diagnosed with celiac (by bloodwork and biopsy) in the spring. She went gluten free in June. At her 6-month checkup last week, the doctor did two different gliadin tests (sorry, I can't find the link right now to tell me exactly what they were) as well as tTg.
Gliadin tests were both within the normal range (I don't know if they were elevated when she was initially tested) but the tTg was still high, 138. So obviously we need to be more careful. It's just tough to know when she's been exposed since she's nearly asymptomatic.
My question is, what's the difference between gliadin and tTg, and what does it mean if one is normal and the other is high?
I have searched the internet for a comprehensible answer to this question, but it's all too medical-ese for me. The doctor's nurse was no help -- she really didn't know the answer (despite him being a pediatric celiac specialist) and basically just told me that "We do them both to help us be sure."
My daughter's behavior has not changed a whit since going gluten-free (but she never had major behavior issues in the first place -- just normal kid stuff). But I wanted to chime in to say that it did take the constipation a while to resolve. She's been gluten-free for 6 months now and it's gotten better. But her diet is still very limited (world's pickiest eater) and she is still constipated unless we give her fiber supplements.
My 7 year old daughter's symptoms were extremely minimal too. She did have very frequent stomachaches, which is why we took her to the doctor in the first place, but they seemed pretty mild. Since going gluten-free 6 months ago, she has shown no sign of symptoms from accidental exposure. However, she had her 6-month checkup last Friday and unfortunately her antibody levels are still high. So she is getting gluten somewhere, even though we're being careful and she is being conscientious too, as far as I know.
We're in a very similar situation to you. My husband, other daughter and I are all non-celiac, and there is gluten in the house. And honestly, we haven't been as careful as we would have been if she showed symptoms. Plus, of course, she eats lunch and snacks at school (brings them from home, but eats right next to kids who are eating gluten).
I guess our next step is to be a lot more careful at home -- to behave as if she would get violently ill, even though we know she won't.
Anyway, yes, it is possible for a child to be getting accidental exposure and still show no symptoms. I'm grateful that she doesn't get violently ill, but it does make it hard to know if we're doing a good job.
I have twins too -- one celiac and one not. Fortunately the non-celiac doesn't mind that we bring rice mac & cheese and a "gluten-free snack sack" for her sister nearly everywhere we go, while she usually has to eat what's being served. She doesn't like mac & cheese anyway. And the celiac would much rather eat her mac & cheese than any unfamiliar food, no matter how gluten-free. So it works out for us.
The biggest problem is that my celiac DD's picky eating greatly limits where we eat out. (There are zillions of gluten-free restaurant options around here, but she won't eat any of them.) That is what my non-celiac DD gets annoyed about. So we try to have date nights where each child goes with one parent and the child gets to pick the restaurant.
In your situation (non-celiac child being jealous of celiac child), I would do what you suggested in your original post -- remind the non-celiac child that his brother has to deal with many limitations that he doesn't have. The rules are appropriate to each person, not necessarily universal. That seems to go against the prevailing opinion, but that's basically what we do in our family. If neither of my kids had celiac, they would eat what is being served. I still expect my non-celiac DD to do that, even if her sister can't.
I worry more that I'm spoiling my celiac DD by bringing her food everywhere. Our family and friends try hard to provide gluten-free options for her, and she is not very sensitive to CC, so I would be happy to have her eat them. But no, she just wants her mac & cheese all.the.time, and frankly it's just easier for us to bring it than to fight with her about it.
In a broader sense, we do get jealously from the non-celiac over the amount of attention her sister gets (both for celiac disease and some other health issues). I haven't figured that one out yet. I am trying to spend more one-on-one time with her to compensate, but there are only so many hours in the day. To some degree I have to fall back on "Each person in this family gets what he or she needs, which is not necessarily the exact same thing for each person."
This was our first gluten-free Halloween as well. My daughter (almost 7) did great with it. If there was a gluten-free option in the bowl, she took it. If she wasn't sure, she just took whatever. Then when we got home, I sorted it all out and replaced the gluten ones with gluten-free candy I had bought previously.
I was actually really surprised at how much candy is gluten-free. (My daughter doesn't seem very sensitive, so we don't worry about shared facilities.)
It also helps (in this case) that my daughter is a really picky eater, even when it comes to candy. I think she was actually hoping to have more stuff taken away and replaced with Skittles!
Our school has a "cash for candy" program where they give the kids $1 a pound -- then the candy gets sent to soldiers overseas. I let my kids keep all the candy they actually trick-or-treated for, but we donated all the extra candy I bought.
I think my daughter's doctor would consider the change in weight gain to be significant enough (especially combined with your positive response to going gluten-free) that he would be willing to test.
Then again, we are lucky enough to have great insurance that lets us do pretty much anything, so we rarely have to work hard to convince doctors to run tests. Sadly, that usually factors into the equation.