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      Frequently Asked Questions About Celiac Disease   09/30/2015

      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 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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Celiac & Non Celiac Kids... How To Keep Things Fair?
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keirasmom    1

Here is the problem I need advice on: My 7 yr old is getting very jealous of my recently diagnosed 3 yr old. Why? Because whenever we go to a birthday party of family dinner I always bring my 3 yr old, dinner and dessert. But my 7 yr old often would rather eat what I brought my 3yr old because it is better than what we are being served at the party/family gathering.

So, what is fair? Do I let my 7yr old be jealous/mad (reminding her that she still gets to enjoy lots of things her younger sister doesnt, ie, hot lunch at school, dinner/dessert when at a friend's house for a sleepover, snack at the concession stand, etc) or do I bring her dinner and dessert as well?

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StephanieL    74

I let my non-Celiac kid eat what she wants when her brother with Celiac isn't around. If they are together, they eat the same things (meaning I bring both kids food with me).

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keirasmom    1

I let my non-Celiac kid eat what she wants when her brother with Celiac isn't around. If they are together, they eat the same things (meaning I bring both kids food with me).

what if you bring your non celiac dinner/dessert but they decide they would rather have what is being served. do you let them eat the dinner that is being served (letting the dinner you have brought go to waste, because i'm not going to refreeze then reuse an already thawed meal, thats not safe) or make them eat the gluten free dinner you brought?

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StephanieL    74

When they are together they eat the same thing. Period. It isn't an option for them.

Even when we go out, for example to Red Robin, DS can have a bunless burger or Chick-on-a-stick so if DD goes with us, those are her options. When she and I go for girls lunch, she can choose whatever. DS was diagnosed with food allergies before she was born and Celiac when she was about 1 so this has just been how life is for her. She doesn't complain about it but she's only 4.

I don't waste gluten-free food ;) I so hear you on that! It can be so so soooo expensive!

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It has been a problem in my house too. Now the older one has also been diagnosed with celiac disease, but the younger one has a lot more problems with cross contamination and symptoms. He really needs more special attention, but then the older one interprets it as greater love. They are 15 and 17 so you would think that they would be old enough to know better by now. I do special things with/for the older one too, but the jealousy of mother's love is hard to deal with. I guess we have to do our best, and they may have to get over it in therapy as adults.

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mommyto2kids    12

That is a compliment that they both like gluten-free food. I'd tell the kids if we have issues when we go to friends, next time we wont go or eat before we go. You set the rules and that is that. That is what I'd tell them.

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kb27    0

These are good thoughts. We are still pretty new at this (10 months gluten-free now), so I haven't encountered all of the variations on fairness.

We made our home gluten-free, so everyone eats the same thing there and it's all safe for my 9-yr-old celiac son. When we go out to eat, we each order what we want, which does mean my 9yr old has more limited options than the rest of us. We have tried to only go to restaurants with gluten-free options. When we were road tripping, if we couldn't find a Wendy's or a restaurant online with gluten-free options, we would just get stuff at the store and have a picnic. We bring along food for my celiac son for parties. We are blessed with friends and family who have tried very hard to make enough of the meal gluten-free that he could eat most of what everyone else had.

The only time my son has seemed particularly upset by the unfairness of it all was at the State Fair, where he really wished he could have some of the deep-fried cheese curds that everyone else was having. Not ideal. We got him a special gluten-free treat instead.

I admit I am torn between wanting to keep everything fair and helping my son learn coping mechanisms, because unfortunately life isn't fair, and he will have to deal with situations where everyone is eating something he can't. I'm curious how others straddle this line. We have made our home safe, but we can't make everyone else's equally edible.

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divamomma    7

Good question. I have two daughters 20 months apart, older one is not celiac the younger one is. Our home is completely gluten free so everyone eats the same thing. If we go out to eat (rare!) the girls both have the same gluten free meal. At family dinners the meal is all gluten-free (I have a wonderul mother in law!) So everyone there eats the same meals. I agree that you need to teach them how to cope in the world because not everyplace is accomodating. However at school and birthday parties my daughter is always different and brings her own things. Within our family I want her to feel included and safe.

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mamaupupup    7

This is such a great question! We have fraternal twin girls, both diagnosed with Celiac (along with me) so we have a gluten free home. We have a TON of "fairness" issues daily, including some food-based (for instance one was lactose intolerant for a few months, now the we have likely discovered a fructose issue for the other).

My basic approach puts my sanity above what is fair, frankly. I think all of us on this forum have so much on our "plates" that it is 110% ok for you to do what is best/easiest/most sane for you, as long as it preserves the health of your family. :)

Here's what works for us:

- I attempt within reason to do what is perceived as fair

- I make one dinner, if kids don't want to eat what I've made they can have a banana or yogurt (which they have to fetch for themselves)

- For going out (like to a bbq) I make meals in the Ziploc brand tupperware type containers that have three compartments. I make some kid-specific accomodations (one likes walnuts, the other likes peanuts), but those are minor.

- If one kid needs lactose free ice cream, that's what we all eat

- If one kid can't have gum because of the sweeteners, none of us have gum and I find a suitable substitute for all

- We say lots of things like, "Oh well, it's no biggie to not have x, we get to eat y" and praise the girls a ton when they proactively adopt those words.

- Another helpful phrase we have found is, "Things don't have to be perfect in order to be wonderful."

- Now that the girls spend more time separately (like being spoiled at grandma's house one at a time), I often get "she got to have french toast and I didn't" type of complaint. I simply say, "I can see how that must feel upsetting. I'll do my best to make it up to you soon" and then try to follow through or make a plan. One of my girls is a total problem solver (she can think of dozens of ways of solving a single problem) so she often has suggestions that really work.

You are a great Mom! Do what keeps you sane! :)

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Minette    0

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."

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Takala    413

That's quite a compliment on your cooking, and I would just humor her (the older one) for a while and bring food for both. The side benefit is that it would reinforce the "at least I'm sharing with somebody" feelings of the younger one also, to have a sibling sharing the same food when they travel somewhere. Treat your kids equally as much as you can, it really helps when they are little, so it's not as bad when they hit puberty..... :ph34r: Okay, yeah, it's expensive and a bit more time consuming, but, the older one will probably change her mind again in a few months or years, and want to branch out to trying regular food. And this way it's her idea. And who knows, maybe the gluten free food just agrees with her system, better.

I used to pack just food for myself in the travel cooler, but quickly figured out my non gluten intolerant spouse really liked it when I put "special" snacks for both of us in there. Sharing is caring :)

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LFitts    8

I have three daughters - ages 5, 9, and 12 - and the middle one was diagnosed with celiac about 4 weeks ago. We are still learning a lot about what it all means and what is best for her, but we live in a very rural area with no access to specialty stores. So far, I haven't had to deal with very many fairness issues (no birthday parties, etc). We have spent our time during the holidays educating family members and making sure that there are plenty of good things for her to eat. The only fairness problem we had was the day after we started gluten-free, at my grandmother's house there were Pringles, Twix, and Kit Kats that the other two girls were eating and 9 year old got sad. We both cried and we have since replaced all of those snacks with things that all three girls can have. Favorites are the Wow brand snickerdoodle cookies and fruit.

I have decided that I will be gluten-free with her, and I have replaced many items in our pantry with gluten-free ones for everyone. Our diet is already quite heavy on fruits, veggies, meats, and cheese, so we haven't really had to make many modifications.

With just a few weeks of being gluten-free we have seen lots of great changes in how she feels and her fingernails are growing out for the first time ever! She was previously diagnosed with IBS, reflux, eczema (which turned out to be DH) and has always been pale, anemic, with brittle hair & nails, and lots of tummy aches. She was diagnosed after upper and lower GI scope, complete blood panel, and the antibody and genetic tests -- she had all the possible positive indicators for celiac. We are so happy to finally have a diagnosis that explains everything and a plan for getting / staying healthy. I am just sorry that it took us 9 years to figure it out.

Sorry for the long post, I'm just happy to find a forum with other people going through this!

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mushroom    1,205

Welcome to our community, Mom! I am glad she finally was diagnosed and is healing. Did you know that your other children should be tested for celiac, too? And at least every three years after, unless you have the genetic test for them and they do not carry the same genes. And you and your husband should also be tested although I note you are going gluten free with her. Is this because you suspect you have issues too, or just in sympathy?

Yes, the whole foods route is the best one to take, both for help and to ease the pocketbook. It is hard for a young 'un to watch other kids eating the stuff she wishes she could have. Have you set up a treat stash at school for her so that she does not feel left out on birthdays and other treat times?

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LFitts    8

Welcome to our community, Mom! I am glad she finally was diagnosed and is healing. Did you know that your other children should be tested for celiac, too? And at least every three years after, unless you have the genetic test for them and they do not carry the same genes. And you and your husband should also be tested although I note you are going gluten free with her. Is this because you suspect you have issues too, or just in sympathy?

Yes, the whole foods route is the best one to take, both for help and to ease the pocketbook. It is hard for a young 'un to watch other kids eating the stuff she wishes she could have. Have you set up a treat stash at school for her so that she does not feel left out on birthdays and other treat times?

I asked the doctor about having the other girls tested and she said that it may not be worth the cost. Her recommendation was to switch them to gluten free if we suspect celiac or start to notice symptoms OR just do the genetic test. I've got to check with my insurance and see if they would cover that for them. I am just joining her in going gluten free out of sympathy for her and because I want her to see that it's no big deal and easy to adapt to.

I love the idea of setting up a stash of treats - especially at school. Yesterday was her first day back to school and she got accidentally glutened somehow. About 3:30 in the afternoon her DH rash started itching, then feeling groggy, then stomach cramping / pains. I don't know what the exposure was from, but a girl in her class gave her a candy cane and she ate it. We don't know if it was safe, so I suspect that it wasn't. We talked about it and she knows not to take ANYTHING from anyone unless she can read the label and make sure that it's okay for her.

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