How To Help A Child Cope

[divamomma]

My daughter told my husband that she "had a dream" (which is how she tells me what she really thinks, there was no dream) that she didn't have celiac disease and could walk into the store and buy whatever she wanted. Then she said she wished she didn't have celiac disease because things without gluten taste different and look different. Breaks my heart

Any suggestions? I know I am having a hard time accepting/adapting/changing I forget sometimes my daughter must feel the same.

[mommida]

It is best to concentrate on what she can eat. Make the situation into cooking classes with your daughter. When it goes well, and you have created a "masterpiece" meal or treat, celebrate and think how lucky you are that being gluten free created such a nice experience for you to share.

It takes some time and practice learning to cook and bake without gluten (or any other allergen you may have to avoid). We did find some foundant and cake decorations that are gluten free for decorating cakes, cupckes, and cookies. It made up for avoiding playdough for years.

When my daughter was really young we did call it "the princess diet". After a year and a half she did tell me she was tired of being a princess, but it did help for a long time and she had to avoid all top 8 allergens, gluten, and peas.

I think trying to offer choices helps a lot too. This or that? Let her make a decision that is in her control about food.

Good luck!

[Valkyriedoom]

I just recently had to remove gluten from my diet. This was very depressing for me because I come from a huge southern family where everything we eat is battered in flour and deep fried and then smothered in gravy. I have wandered around grocery stores for hours in tears because I can't find things that I can eat that sound appetizing. A few things have really helped me with this, and I think they would help kids as well. My mom pointed out to me one day that most people don't get to just eat 'whatever they want' many people have food allergies, or are on a diet, or are diabetic and can't have sugar, or have religious or personal food restrictions such as having to eat kosher or being vegetarian. Even people who can have gluten would still get sick if they sat down and ate a whole box of cookies. The other thing is much more silly but it was a big help. For my birthday I was depressed because I wanted cake that tasted like real cake and was tired of grainy rubbery plasticky tasting baked goods. My boyfriend bought a Bob's Red Mill vanilla cake mix and made me cupcakes with gluten free icing. They tasted like real cupcakes! My friends at my party couldn't even tell the difference. Now I have a 'treat' that I can fall back on when I'm feeling down. I think for a kid being able to have a treat that actually tasted really good goes a long way.

[Darn210]

My daughter was 6 when she was diagnosed. I told her that she could still have all the things she liked, it was just some of them were going to have to be home-made (eg, chicken nuggets). I hope you are not afraid to cook/bake. It makes all the difference in the world. Premade is so-so at best. Some mixes are OK . . . some not . . . and in general it's much more expensive to buy it that way. Home made gluten free cookies and cakes and muffins are every bit as good as their gluten counterparts. Bread is a different story but there has been great progress on that front in the last year or so (Udi's and Rudi's).

In my daughter's first year, she ended up with more 'treats' than we normally would have let her have. She had M&M's, Skittles, ice cream, etc . . . we did it so that she wasn't feeling deprived and it was things that weren't made by me. Once she seemed well-adjusted to the diet, we scaled back.

[Darn210]

I know I am having a hard time accepting/adapting/changing I forget sometimes my daughter must feel the same.

I think I initially had a harder time than my daughter. I think as adults, we have a better understanding of what "for the rest of your life" means. I may be kidding myself, but I think young kids have an easier time "forgetting" gluten than teens and adults. Most kids have a somewhat (self)limited diet anyway. Now, this doesn't mean that my daughter has forgotten that she loved wheat thins, but I don't think she really remembers what they taste like. She also realizes that it's not as easy to just go into any restaurant and order anything you want. However, since she never had a croissant, she's not going to be pining for them.

Also, just some words of encouragement . . . the diet will get easier, the cooking/baking will get easier, and the products being offered will get better. We've been at this for four years. I'm pleased with how many new products are now availble. There is better labeling. There is better selection. Now my local grocery store carries most of what I need and I rarely have to go to Whole Foods.

[divamomma]

In my daughter's first year, she ended up with more 'treats' than we normally would have let her have. She had M&M's, Skittles, ice cream, etc . . . we did it so that she wasn't feeling deprived and it was things that weren't made by me. Once she seemed well-adjusted to the diet, we scaled back.

Thank you for saying this! I do feel like she has had so many "treats" and wonder what the heck I am doing sometimes. But it is true. I don't want her to feel deprived.

I do cook and bake. It just seems like more work now...shopping for weird ingredients, making recipes that taste awful etc. Very frustrating.

Thanks for all the replies!

[glutenjunkie]

I know how hard it is, to impose the diet on your child. My 5 year old daughter has been gluten free since she was 2 and while it's helped her IMMENSELY, sometimes I still feel really awful about that. She has adjusted well. She knows gluten makes her feel terrible and avoids it herself. But, it still makes me sad for her, especially at birthday parties where everyone is getting a slice of the bday cake and I'm pulling out a cupcake I made at home and made SURE that frosting matched...

It gets easier, for you and for the kids. Honest

[T.H.]

It just seems like more work now...shopping for weird ingredients, making recipes that taste awful etc. Very frustrating.

It really can be, yes? I think that when the ingredients can be so much more expensive, and we have no idea how they're going to taste/turn out, if it fails, it's SO frustrating, yeah?

I've tried to have my daughter play a large role in helping pick foods and cook. We are trying to make if, well, fun, I guess? We make something and she gets to try and figure out how to make it as pretty as possible. Add cut fruit, decorate the plate, put out all sorts of pretty bowls and plates all over the table, or flower arrangements, or make up a sauce to put over something.

And honestly...woooo, sometimes, these sauces and such are just, OMG, something only a small child would love, LOL. But I think she feels like, hmmm, like she has more control, maybe? She's lost so much control of her life, it seems, so having control over this aspect of the food has helped some.

She still misses food, her little brother more so, but after a while, she has adjusted and now we try to think of fun foods to make together, and look at picking weird unknown foods at the grocery store and go home to find out what you can do with them, etc...

Basically, I'm trying to make the whole cooking and eating thing fun, since it's going to be so unfamiliar for a while. :-)

[CeliacMom2008]

Things we do:

I bake and cook A LOT! I supply pizza or cake or cookies or whatever for all of kiddo's functions/parties. In the beginning, I would make "special" cakes for the birthday parties he went to - decorate them in a special way, use his favorite color for the frosting, etc. This did backfire one time. I made a smiley face out of skittles on top of the piece of cake but didn't tell him. When I picked him up he said he didn't eat the cake because it had candy on top and he didn't know where the candy came from. Valuable lesson learned - people with Celiac don't like surprises in their food! Now I still surprise him, but I share the surprise when I'm there to explain that it's safe!

Also on the birthday cake front, I always make my son's favorite cake for him to take along. He never cared for white or yellow cake pre-diagnosis, so I would always send him with chocolate and tell him how lucky he was that he got to have HIS favorite kind of cake, not the birthday kid's favorite kind of cake. We use this same philosophy with bringing foods to holiday gatherings. An example, my grandmother's Christmas Eve tradition is Italian Beef. Kiddo never ate it. He didn't like it. When I started bringing his food, I certainly wasn't going to make Ital. Beef for him since he hates it. So a new tradition was born. He has shrimp pasta alfredo every Christmas Eve - it's HIS favorite. That really seemed to work well for him.

Like Janet, we overdosed on the treats - candy, cookies, cakes, crispy rice treats, you name it. I definitely overcompensated! Now 3 years later, we still overdo them a little, but we're much closer to what we used to be.

Make meals special and fun when you can - theme dinners, cute plates, pizza and a movie, eating on the patio, picnics, etc.

Eating out and about can be a pain. We frequently have "car picnics". I'll pack a meal and then we will sometimes add something like a Wendy's frosty or Dairy Queen ice cream treat to it. We also will stop at a park for a quick picnic or meal before a soccer game, etc.

Get Dana Korn's book on Celiac Kids. It is so so valuable. She really hit on a great number of issues we have to face with our Celiac kiddos. Very worth the money and time to read.

Join a support group. We didn't have a kid group, so we started going to an adult one. It was mostly older people, many the age of my son's grandparents. He was the only kid when we started going. They all sort of adopted him as a their Celiac grandkid. They gush over him when he goes to the meetings.

When you've been doing this for awhile and your kiddo has a bad day (they will have bad days, probably forever, but who doesn't have a bad day about one thing or another every now and then?), try to talk about all the good things that came out of them having Celiac. For us, it really helps. We've met some wonderful friends who we never would've known had it not been for Celiac. We've had some very special family times that we wouldn't have had. And I truly believe Celiac made us an even closer family. We spend a lot of time in the kitchen together - prepping/cooking, eating, cleaning, baking, etc. That time really translates into a lot of talking, lauging, and being close. Sure, it's not the plan we had laid out, but the last 3 years have given us more positives than negatives. That said, there are still a lot of trials you have to go through. But just get through them and back to the positives as quickly as possible!

[srall]

It's funny. I always have dreams that I'm eating forbidden food. And then in the dream I always get to a point where I panic because I realize what I've eaten and that I"m going to get sick.

In some respects getting my daughter to switch has been easy for HER because she felt so awful before. I honestly don't know how long that poor child lived with a chronic stomach ache. She's also off dairy and corn, and tells me often that she thinks corn syrup free treats are so much better than regular treats because they don't make her sick.

A lot of the burden has actually fallen on me. She still has pasta and bread...just rice flour instead of wheat. But my definition of convenience has changed. Now whipping up muffins or a sauce seems pretty easy...I have easy recipes and complicated recipes. The other night my daughter asked for noodles and as they were boiling she said, "I really want some spaghetti sauce with my noodles." Well, in the past that would have seemed like a big hassle. But I just whipped something up. The sauce didn't simmer as long as it should have, but she was okay with it. So...again, I've had to step up a lot to feed her (and myself) but she's been mostly okay. It is a bummer at birthday parties and things like that. In the beginning she used to cheat, and then get so sick, that now she's really her own advocate. I hope you get there too. I really think you can retrain their taste buds. Good luck!

[srall]

Oh...and sometimes we have "McDonald days" This is a day that life is getting rough and we wish we could just go through the drive through and pig out. So instead we might watch extra t.v. on a school night, or buy a toy, clothes or something small. Goofy, but it makes us both feel better.

[cap6]

what great mom's. !!!

[divamomma]

Such awesome advice and support! Thank you! I knew all of you here would get it, most of my friends and family don't.

[mommida]

My kids just asked yesterday when we can have another car picnic!

[seezee]

Some things we do.

I found a gluten-free flour that I can substitute 1-1 for wheat flour and I can't tell the difference. It takes trying a bunch, but it's worth it. (I couldn't cope with recipes that have 6 types of flour and then xantham gum.) My family bought me a stand mixer which means I can make cookie dough in five minutes.

I always make a really big breakfast. My mother-in-law bought me a waffle maker and we make those for breakfast a lot. It means getting up about ten minutes earlier.

My daughter knows she can get whatever it is at home and uses that to cope when it's really hard. She's 12 so doesn't like to have her own something at a party any more, but she'll sip juice and when we get home we'll make cupcakes or pop tarts or whatever it is.

She knows she feels so much better and that helps.

[FooGirlsMom]

Hi,

My daughter (age 9) and I both went gluten-free in October. Since then, I've found numerous ways to give her some sense of "normalcy". The only thing that isn't normal is that you do have to provide your own foods, as you know.

However, there are so many things that help now.

There are some products you might want to look into that are kid favorites: Tinyada pastas (spaghetti, lasagna), Cake Mixes (Betty Crocker has some great recipes on the gluten-free portion of their site. I made the pineapple upside down cake this weekend and we nearly died of happiness on the spot and ate it all in one sitting) I did modify it a teeny bit, pamela's chocolate frosting (it's our favorite), Annie's gluten-free Mac & Cheese made with gluten-free Hot Dogs - I cook them into octopuses in boiling water), Cookies, etc. Chex has recipes too. And if your child is anything like mine, a good pizza is a must. We have opted to use Jules' Gluten Free Flour & recipes. They have saved our lives.

You can make food fun. Kids cookbooks have a hundred ways to present food differently making it look like works of art rather than food. Sometimes getting creative takes the sting out of no more Happy Meals, if you get my drift. You can make your own "Happier Meals" surprising your child. You (or she) can decorate a lunch sack (they can be made into puppets), and you can put fun food in it including a dessert.

I have found that kids respond to our reactions. If we feel stressed or upset or sad, that's how they will feel in the long term. If we make gluten-free into a grand adventure - experiments, fun foods that everyone likes including the non-gluten-free, and constantly reinforcing how wonderful it is, then they adapt pretty well.

You didn't say if you went gluten-free with your daughter. I can say that if my child had to be gluten-free, I'd do it with her just she didn't feel weird and alone. For mom to say, "Hey I'm doing this too..it's fun (not so bad).." they can accept it easier.

Honestly, gluten-free tastes so good at our house, even our college-aged son (who we all think is Celiac too) is looking forward to coming home on Spring Break in a week so he can eat our gluten-free food. Now that's saying something. lol

Good Luck,

FooGirlsMom

[anna34]

My daughter told my husband that she "had a dream" (which is how she tells me what she really thinks, there was no dream) that she didn't have celiac disease and could walk into the store and buy whatever she wanted. Then she said she wished she didn't have celiac disease because things without gluten taste different and look different. Breaks my heart

Any suggestions? I know I am having a hard time accepting/adapting/changing I forget sometimes my daughter must feel the same.

My daughter was just diagnosed this week (she's 5) and she is experiencing the same feelings, so I can empathize with your posts. She asked me this week, if she gets her blood taken again will she not have celiac anymore. Broke my heart to realize that she didn't understand that this is a forever thing. I spend my days frustrated and trying to figure out her food, wondering/waiting for the rest of my family's test results, and didn't realize that she wasn't quite understanding. I guess, the good news is, that when they're young like this, eventually, they will adjust. I suspect that if I also have celiac (waiting 2 more weeks to find out) that I'll have a harder time giving up yummy foods. Anyway, I understand where you're coming from, and I'm grateful for this board and all the support it provides.