How Did You Tell Your Kid They Were Celiac?

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Just curious how you guys broached the topic with your kid(s) and at what ages.

My 6 yo is only symptomatic after several days of eating gluten. Once he gets the cramps and the symptoms, he willingly goes off gluten but soon he forgets the pain and wants the gluten again. It is difficult to explain to him because he doesn't quite 'get it' with the concept of the cumulative effect. He doesn't understand that cramps on the third day don't mean you got away with it the first and second day.

I am going crazy and broke trying to motivate him to stay with the diet. He is blissfully asymptomatic right now, but grumpy as hell. Ugh - just to make a point I brought gluten-free cookies to the playground so he wouldn't feel 'different' . I didn't say anything just put them out for all the kids -- six bucks worth of 'cookies" gone in a minute!!!!! Anway - it was cool for him to see that other kids didn't even notice the cookies were gluten-free.

Meanwhile, we have not exactly made an official announcement to him or told his school. The plan is to wait til we get some test results on is brother. How did everyone's kids react when you told them they'd had their last slice of real pizza? Tips?

~~~Incidentally, I am not into fibbing or denial, trying to pass off soggy gluten-free pizza as 'real'. He may indeed be stuck eating it, but he's had enough of the real stuff by age 6, to know better.~~~

Thanks , Heidi

[JennyC]

My son is 3.5 yrs old and I told him that there were things in some foods called gluten that hurt his tummy. I told him that we were going to quit eating those things and his tummy was not going to hurt anymore. This was effective because he had been very symptomatic. I also was quick to attempt to replace his favorite foods with gluten free versions. Now he regularly asks if specific foods are going to hurt his tummy, and occasionally he will even ask if they are gluten free. I know gluten free food is very expensive, but maybe it would be easier if all of your children ate the same food as much as possible. Kinnikinnick makes very good pizza crusts and other bread products, including doughnuts and "Oreo" cookies. Glutino makes some good crackers and cookies. There are also lots of "normal" foods that are gluten free. Our entire household is not gluten free, but it is pretty close. We hide the gluten goodies (that were mainly purchased prediagnosis) on the top shelf of a cupboard. We often make our own gluten free cookies and deserts. Once you get the hang of it, it's not too bad.

Best Wishes.

[mandasmom]

My son is 3.5 yrs old and I told him that there were things in some foods called gluten that hurt his tummy. I told him that we were going to quit eating those things and his tummy was not going to hurt anymore. This was effective because he had been very symptomatic. I also was quick to attempt to replace his favorite foods with gluten free versions. Now he regularly asks if specific foods are going to hurt his tummy, and occasionally he will even ask if they are gluten free. I know gluten free food is very expensive, but maybe it would be easier if all of your children ate the same food as much as possible. Kinnikinnick makes very good pizza crusts and other bread products, including doughnuts and "Oreo" cookies. Glutino makes some good crackers and cookies. There are also lots of "normal" foods that are gluten free. Our entire household is not gluten free, but it is pretty close. We hide the gluten goodies (that were mainly purchased prediagnosis) on the top shelf of a cupboard. We often make our own gluten free cookies and deserts. Once you get the hang of it, it's not too bad.

Best Wishes.

I think its really important to have honest and open conversation with children about all the issues that impact their lives...that how they learn to trust thier parents and other adults in their lives. We told our daughter right away and included her in the plans to select new kitchen items and recipes etc..there is definetly an adjustment period complete with ups, downs and oops..but honest conversatiosn are key and so is concitency. After a while she became better at qualilty control than I was! Its a tough thing--I wish you the best of luck!!

[Amanda Thomas]

Kaitlyn Grace is only 3, but she also has a corn allergy, so she would always ask if something has corn in it, cause corn makes her sick. She is very funny about her corn allergy, she'll even ask her GI if she can try just a bit of corn, cause maybe since she is a big girl it won't make her as sick!! With the celiac, we did the same as the corn. Although she doesn't grasp celiac she does grasp flour, so she knows we make her own cookies and pancakes, and she ask before she can have something.

We also have made our home mostly gluten-free. Our 13 yo does not mind and our 9yo is extremely special needs, so he does not eat orally.

I will agree it is an expense int he begining, but it is a healthy easy way to eat. Making our own cookies and bringing them to play dates has worked, so has using alternatives to cookies, such as fresh fruit and yogurt. We hosted play date last week and did taco salad and it was a hit with the kids!!! No shells but they used lay stacks to scoop it up and loved it!

[Guest maddiesmom]

My daughter is also 6 and she has only been on the g.f. diet for little over a week now. I just sat her down and explained that some things in the foods that she likes (mac and cheese, bread etc) was making her sick and from now on I would have to make her food special so she wouldn't get sick anymore.. it's still the same food just made with different stuff. She was ok with that. I have made her mac and cheese and didn't make a big deal that is was a new kind same with chicken tenders too. I have made her sandwiches with the rice bread and didn't mention that is was different bread and she ate it fine.. there are alot of "normal" foods out there.. you just have to be creative. If you dont' make a big deal out of it then they won't... I also let her pick what she wants to take for lunch and have a say in what I cook for dinner.

[Pacer]

Kaitlyn Grace is only 3, but she also has a corn allergy, so she would always ask if something has corn in it, cause corn makes her sick. She is very funny about her corn allergy, she'll even ask her GI if she can try just a bit of corn, cause maybe since she is a big girl it won't make her as sick!! With the celiac, we did the same as the corn. Although she doesn't grasp celiac she does grasp flour, so she knows we make her own cookies and pancakes, and she ask before she can have something.

We also have made our home mostly gluten-free. Our 13 yo does not mind and our 9yo is extremely special needs, so he does not eat orally.

I will agree it is an expense int he begining, but it is a healthy easy way to eat. Making our own cookies and bringing them to play dates has worked, so has using alternatives to cookies, such as fresh fruit and yogurt. We hosted play date last week and did taco salad and it was a hit with the kids!!! No shells but they used lay stacks to scoop it up and loved it!

Amanda - I am new to this format and just checked your profile and saw your other posts. My goodness, the corn + gluten thing must be difficult . What a loser dietician you encountered. And you are saying you have an older child who is extremely special needs as well??? Oh, my. I am sure you are plrenty overhwelmed how is it going.

Have you been able to find any sort of IRL support? I am just wondering what kind of stuff you've been doing for relief. Yourself or your child. I am also a caregiver for several different chronic illnesses. Regular stuff like asthma. But also, my celiac kid has a much much bigger issue, he has a syndrome in which fluid collects on his lungs. Lately he has spent quite abit of time at the hospital, uncomfortable tests, and on top of that Gluten got yanked out of his diet around April 1. So he is feeling a lot like "why me?", and I wonder if and when and how I can compassionately address that. I know there are lots and lots of other sick kids in the world. Any tips on how to help a kid cope?

Thanks - HEIDI

[Cam's Mom]

Hi!

I share your concern on helping kids cope. I am not sure I have any answers though. In fact my daughter (almost 7 going on 27!) has far more answers than I do.

Camryn is for the most part an asymtomatic celiac however when she was first diagnosed she had become quite sick. When we suspected celiac we told her that we thought that it was something that she was eating that was making her sick and we would figure it out and stop eating it and she would get better. She was 5 at the time and became terrified that she might be allergic to her own thumb and would have to stop sucking it. When we figured it out she said "well it's not my dog and not my cat and not horses and not my thumb and not my brother and not my parents so how bad could it be". Then we talked about what gluten is in and she said okay until I got to steamed chinese dumplings (her favorite food in the world) and she cried and we all cried. Then I swore to her that I would figure out how to make dumplings and anything else she wanted.

Today, she and I make really tastey dumplings and she love gluten-free pizza and she's not missing out on any cookies, cupcakes or brownies. She says she doesn't remember real bread or what a bagel tastes like and while that is sad, it is probably a good thing. Now when I ask her if she wants to go somewhere even though there will be a lot of food she can't eat she cheerfully says, "Mommy, it's really about the people for me, not the food".

Camryn also has diabetes and just won second place in the PBS Young Author's and Illustrators Contest for a book she wrote called Super Camryn and Her Mighty Insulin Pump. She is also working on a book called A Kid's Guide to Celiac Disease. It has ideas on how to go to sleep overs and birthday parties, how to handle celiac at school and how to explain it to your friends, and will have many of her favorite recipes. She says she wants to get it published.

Anyway, I often feel overwhelmed and defeated by Celiac and Diabetes but Camryn has made gluten free lemonaide out of her pile of lemons. When she was first diagnosed I told her that something really, really, really good is going to happen to her in her life that wouldn't have happened if it weren't for celiac disease and JD. I only sort of believed that when I said it but lo and behold within 1 year she has turned into an incredible, mature, responsible compassionate person (she was also just nominated for a Human Rights and Heroism Award in our town). She is creative and brave and strong and just totally amazing! She doesn't spend a lot of time thinking about being a "diabetic" or "celiac" but those things are strongly influencing the person that she is becoming and this is in no way a bad thing.

Well, I guess I don't really know what the point of my story is but this is a crummy way to build character and I would prefer my child not have to go through what she goes through. But, to see her go through it with such grace and pride really helps my sad, guilty heart. I hope that you too find a silver lining!

Best,

Barb

[kbtoyssni]

I don't have kids so I'm not sure how helpful this is, but I would think if you can replicate "normal" food as closely as you can, the kid won't be as upset because he's not missing out on anything. I also wonder if you give him more freedom to choose what he wants if that might help. If he gets to pick his food, it's not like you're forcing some yucky gluten-free stuff on him.

[2kids4me]

She says she doesn't remember real bread or what a bagel tastes like and while that is sad, it is probably a good thing.

My son is diabetic celiac too...it is hard and there are ups and downs. For bagels - have you tried the Kinnickinnick bagels - they are yummy. Real bread? I guess the kids have never made that statement becasue they do eat "real" bread all the time - made with a different flour. If you change the way things are phrased it can help cope - they cant have wheat bread but they can have all different varities of gluten free breads.

Both my kids were older when diagnosed so it was easier for them to understand the disease plus they felt so much better. My daughter is the "gluten police" when shopping, I include them in meal planning , shopping - it gives them a sense of control over their life.

I don't feel guilty they have conditions... crap happens and at least its treatable with diet...the diabetes is treatable with insulin.

Kids can be born perfectly healthy and then get injured somehow or face learning disabilities - no one has a crystal ball.

We deal with injections and pills and learning strategies for autism, regular bloodwork for both kids.

Day by day...

There are kids out there with cancer or who live in a wheelchair - if the kids affected can smile and go with the flow...then I can too.

It doesnt mean you aren't allowed to feel overwhelmed, or sad some days - that's normal.

Teach the children to take it in stride, if you feel guilty and they sense that - then the egocentric beings they are - they will figure it's their fault mommy/daddy feels sad.

[Cam's Mom]

Sorry about the "real' bread comment, I should have said "wheat bread". the point was, that she really doesn't care or miss it. We make home made bread (Lorka's Flax bread - Yum!) and we bake bagels and all sorts of other things. She simply does not miss that which she used to have and I think that is why she does not remember what it tastes like.

As for sadness and guilt - I think it is just a normal part of the process for a parent, I don't share it with her and I understand it in myself and am working on putting it where it belongs but feel that it is okay to recognize the feelings for what they are. I know crap happens but it still saddens me that it happens. And I am thankfully daily that it is not something less treatable.

[2kids4me]

Sorry about the "real' bread comment

Oh silly, dont be sorry I know what you meant, guess I'm trying to reach the newbies as well.

I know how hard the diabetic /celiac combo is - its like a double whammy. I have sad days too, my worst is when my neuropathy is really bad and I try and hide the pain from my son and inside praying he never has to deal with the complications .....knowing I was diagnosed 21 years ago and wondering - is this what he will face at 29? He knows I have complications from diabetes and I tell him that was because they didnt have Lantus or Humalog back then and I wasn't as good as he is now.

This board has been a lifesaver in so many ways, I come here often and it's nice to know others share the experience......

Sandy

[Guest Chrisbee]

My children are 22, 19, 10, 6 and 1. They've all had some symptoms, but two have severe symptoms. We've been to many doctors and specialists and have got many a different diagnosis. When the last doctor we went to suggested Celiac, I was relieved that it was something we could control with diet. The doctor suggested we try a gluten-free diet which I now have learned was not a good idea before being tested, but it has helped so much. I sat the 10 and 6 year olds down and explained to them what Celiac Disease was and how they might feel better cutting gluten out of their diet and they both were more than willing to try it. Especially the 6 year old who had itchy skin, blistery rashes, IBS symptoms and was up crying with his bones aching several nights a week. Within a week, his symptoms were gone. That was enough to convince him. We also got the book, Eating Gluten Free with Emily, which he read over and over. His favorite reading material, however, is the gluten free candy and snack list I printed out for him! He has it just about worn out already!

My 22 year old is the other one with severe symptoms. She tested negative on the blood test, but I'm not sure they were sent to an accurate lab. Her doctor still thinks she has Celiac even though the tests were negative so she is scheduling her for an endoscopy. She's our guinea pig since the rest of us have been gluten free for too long to be tested, and I can't bear to put my six year old back on gluten.

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Oh, man. I am starting to get more overwhelmed, not less. I don't have a nobel-prize-winning celiac kid, just a regular one. His special 'superhuman gift' seems to be the ability to detect the flaws in gluten-free food substitutes. It is NOT going easily, and it is NOT going well. I don't know what I am doing wrong.

[2kids4me]

I don't know what I am doing wrong.

You are not doing anything wrong. Kids dislike change - I think lots of people do..

Kids complain about any new food - gluten or gluten free.

I remember the first time I introduced lasagna - when they were younger. They refused, made faces, played with it........the next time I made it...they were hungry enough that one tried a bite - then dove in saying "This is really good!!"..followed by "how come you didnt tell us it was good?"

It is hard when a life changing diagnosis enters our lives.

None of us have nobel prize winning kids - my kids have bad days too ...

as I got better at finding palatable breads, made gluten-free doughnuts and mastered gluten-free cookies - then they were more apt to try something new. My first cookies were doorstops, never thought I'd make decent muffins again but after some trial and error, trying different recipes and mixes - they are quite yummy.

The section on baking in this site is helpful.

and I learned how to place online orders to Kinnickinnick

testimonial for 12yr old boy: Glutano cheese pizzas are awesome.

Kinnickinnick english muffins cut in half make fun snack pizzas - put topping on and broil. (thaw muffin first)..

Hang in there!

Sandy

[sarah ruth]

Ahhh... take a big breath... you WILL figure this out with him because it's such a positive thing to find out what's hindering health. Maybe have a little time out with him, sit and re-introduce gluten-free as such a positive change, and talk about the adventure of finding new treats to eat and cook, and ask for his help. The idea that if human beings were seen as a 45 year old man, then wheat was introduced when they were 41 has helped me tremendously with the "why me/us?" question - of course so many of us can't digest it!! What a crazy short experiment in human nutrition to suddenly have most of our diets centered on wheat!

With my 5 year old it has helped to really involve him in the shift, focusing on good health. Browsing cookbooks and recipe forums has been great - find the recipes and cookbooks people rave about and you won't believe how good gluten-free can be! We made pizza crust, sandwich loaf, birthday cakes and brownies that EVERYONE loves. Encourage his inner scientist and have a weekly recipe challenge, new bought food tasting, etc.. keep talking about how great it is to be figuring out what our bodies are telling us and acting on it.

In a pinch my kids love the MI-DEL animal crackers and ginger cookies, and they're only $3-4 a package here. Little crunchy rice crackers with nut butters or cheese in the middle, and macaroons.

[Nic]

My son was 4 when he was diagnosed. I explained to him that some foods contain gluten and that his body is confused and thinks that gluten is poison. He understood this very well and thought it was funny that his body was confused. Now that he is older (6) he now knows exactly what contains gluten and not to except food from someone who doesn't know his diet well.

Nicole

[Guest GrimTribe]

My son is 3.5 yrs old and I told him that there were things in some foods called gluten that hurt his tummy. I told him that we were going to quit eating those things and his tummy was not going to hurt anymore. This was effective because he had been very symptomatic. I also was quick to attempt to replace his favorite foods with gluten free versions.

Best Wishes.

That's pretty much what we tell Steele. He's 5, almost 6 now, and that's a long time to eat pizza & donuts & cake with everybody else and then you can't. He does get excited when we manage to find (afforable) replacements for his favorite foods. Diva even bought mini loaf pans so he can have gluten-free meatloaf & tiny Steele-sized bread.

All you can do is tell him and then practice what you preach. Make sure when you go shopping to show him the stuff he can and can't eat. I even let Steele see what's in the food and tell him, "That's gonna hurt your tummy, this will hurt your tummy. Do you want to be sick? OK, so we can't get this for you. Let's get this instead.."

If you involve the kid, it makes it easier to make them understand why they can't eat certain foods. Don't ever underestimate how much they can understand. Just use every day words when you can to talk to them. Stuff like gliadin and cross contamination may not mean much but if you say "the tummy-ache stuff" or "the mean belly stuff" (these work well with Steele) they'll get it.

Repetition is good for kids, although it may drive adults batty.

[Pacer]

<<He's 5, almost 6 now, and that's a long time to eat pizza & donuts & cake with everybody else and then you can't. >>

Exactly. Yet it's still a little young to be completely reasonable about consquences.

I have never, ever lied to my kids or insulted their intelligence in any capacity. It doesn't feel right to me to try to tell him the fake pizza, pasta, etc is "delicious", because I tasted it and I've had better food in bus terminals. My son has had pizza margherita in Italy and bread in Paris. I don't even serve food that has been kept in plastic, I think you can taste the plastic on it. :-/ Normally, I have taken care an dpride in cooking and made everything fresh in small quantities. There is no way I can load off frozen pizza on him and expect him to like it. We have never condescended to our kids - always included them with us at great restaurants and taught them to appreciate fresh goodness. We never bought regular mass market cookies or foods, always homemade and fresh. If someone had told me I was spoiling my kids by doing this I would have replied that I am OK with them developing a sophisticated palate, even if it's a little more effort for me to feed them.

Well, I guess payback's a b****, isn't it. I simply can NOT figure out a way to feed them as celiac vegetarians. I am beside myself. I know the above comments may come across as snobby - please if anyone is reading, please understand that I am just being honest and am utterly desperate for some help, understanding, or workable suggestion, inlcuding some sort of counseling or therapy. I can see how if a family ate meat, celiac might not be sucha big deal. I have heard that people love "a good steak", but over here our big treats were pizza , pasta, and baked goods.

I have saved the vegiac website and I am ordering the veg celiac book later today. Thanks for reading. Heidi

[Amanda Thomas]

Amanda - I am new to this format and just checked your profile and saw your other posts. My goodness, the corn + gluten thing must be difficult . What a loser dietician you encountered. And you are saying you have an older child who is extremely special needs as well??? Oh, my. I am sure you are plrenty overhwelmed how is it going.

Have you been able to find any sort of IRL support? I am just wondering what kind of stuff you've been doing for relief. Yourself or your child. I am also a caregiver for several different chronic illnesses. Regular stuff like asthma. But also, my celiac kid has a much much bigger issue, he has a syndrome in which fluid collects on his lungs. Lately he has spent quite abit of time at the hospital, uncomfortable tests, and on top of that Gluten got yanked out of his diet around April 1. So he is feeling a lot like "why me?", and I wonder if and when and how I can compassionately address that. I know there are lots and lots of other sick kids in the world. Any tips on how to help a kid cope?

Thanks - HEIDI

Heidi,

Yep the corn and gluten thing is crazy but doable. We have a private duty nurse 60 hours a week with my son. Kaitlyn Grace also has kidney reflux and GERD and lung problems, so they why us is starting. She asked me yesterday why she is always so sick and can't eat chicken nuggets anymore. I reminded her that she is not as sick as Noah and its only food, we can make our own chicken nuggets and they taste better that way and she could help me. Right now at 3 that suffices. I worry more about when she is older.

[Jodele]

Hi everyone.

I guess I was lucky with my kids. I have 3 girls. they are 9, 6, and 5yrs. When my oldest dd blood work came back, I sat down with all the kids and told them what was wrong with the whole family. I told them what gluten was and what it did to there bodies. I gave my oldest the job of looking at the lables of candy to make sure that it did not contain any gluten. This year her teacher was so imprest that she could read lables better than her. I also included them in trying all the differnt mix, cookies, and cereals. I also went gluten free and that helped them to see that i could do just like they could do it. My youngest always ask "do it got gluten" or "is it glutenfree" if she was given something to eat by anyone, she suprised me. I am very proud of my kids. do not think they dont understand, they do. I told mine that gluten for us is like poisen. It might not feel sick for a few days later but it is caused by the gluten. you dont have to talk down to them. if they have any questions and you do not have the answer get on the internet with them and find the answer. included them in everything. one thing i know is if they do not like to even try new foods let them help cook what ever you are making. It realy helps. my oldest is such a pick eater. Well I hope this helps.

he will adjust. little kids are stronger than you can imagen.

Jodele