Grieving Process For Just Diagnosed Kids

[Grace'smom]

Hi everyone

I am reaching out looking for support from moms and dads of kids with celiac who struggled emotionally. My 6 yr old daughter, Grace, was diagnosed two weeks ago. I expected this to be a difficult transition, but I wasn't prepared for the grieving she is experiencing over the radical diet change. Every few days, she gets mentally "stuck" on something containing gluten that she really, really wants to eat and thus begins a downward spiral of tears, and begging her Dad and I to "give in" and let her have the treat. (Of course, we don't, and try and re-direct her to other can-do options). The tears can go on for up to an hour, with her distress that we won't just give the snack to her. I'm struggling with the position she has put me in as dictator of what is and is not allowed. I wanted to avoid having to say "no" to foods, so I've instead had her read labels with me to look for the word "wheat" or other alert words. That way, we could discover the answer together, and the pressure wouldn't fall on me to be the answer source. No matter, the tears are still on full-force when she hears that it's got gluten in it, and she literally BEGS for the snack. We've gone to the library and even found a book about a little girl with celiac disease. She loves the story. I've loaded my pantry with gluten free snacks. I just think this is going to take time, time, time. In the meantime, what words that you used help your child when they first began this diet and asked for gluten? She did not suffer many physical symptoms of celiac, so I can't point out to her that she is feeling better, there isn't an obvious difference. Please help me guide her lovingly through this process with any ideas that worked for your children when they were distraught. I'm not used to the meltdowns and feel like the bad guy. Thank you, Emily

[psawyer]

What book was that?

[buffettbride]

We felt it was very important for our daughter to have some good go-to junk food that was safe and mainstream. Things like Snickers and Milk Duds and such that she already really liked that was safe. The first year or so, we had to have a lot of snacky stuff on hand (like, in my purse) when we went out so when those temptation opportunities presented themselves.

But reassure her that it is grieving. She really has lost something and it is OK to be sad.

[Grace'smom]

What book was that?

Hi Peter,

The book is called Eating Gluten Free with Emily, A Story for Children with Celiac Disease by Bonnie J. Kruszka. It is a fictional story about a little girl who just got diagnosed with Celiac disease, and covers the basics about the illness; and how among other things that make her special, this is a part of who she is. I'd say it is good for preschool-3nd graders. My kindergartner really likes it. - Emily

[gary'sgirl]

I wonder if you could explain to her that if she keeps eating things with gluten in them she may end up getting very sick. You could tell her about different health problems that could happen from continuing to have gluten in her body.

Maybe if she knows someone with asthma or other health problems that are known to be caused by, or link to Celiac disease, and explain that this could happen if you don't take care of her body and that having other health problems could stop her from being able to do things that she really likes to do such as sports. I definitely don't mean threaten or scare her, just tell her some of the facts and it may help.

My almost 5 year old daughter also has Celiac disease and when she asks for foods that she can't have I tell her that those foods can make her sick, so far that has been enough of an explanation for her, but she is a bit younger than your daughter, that's why I thought your daughter might do better with a little more info.

Just a little encouragement about the emotions - it seems that many people have an emotional withdrawal that they go through after going off of gluten for the first weeks or months. It should get better with time - hopefully real soon.

I hope the best through this for you and your daughter.

~Sarah

[nmorris087]

Hi I have 2 sons both who have medical issues and have had to deal with food restrictions throughout their lives (they are 6 and 9 and have had varying levels of restrictions at different times). I agree that a matter of fact, "it could make you sick" response is important. Also not allowing your emotions to get in the way is important too. I used to tell myself, I would not feel emotional telling them they could nto drink bleach so why do I feel emotional saying they can't eat forbidden foods? Once you think of it like that, it helps to not feel so guilty. You are your child's advocate and protector and as long as you know what you are doing is right and out of love, she will "feel" that. You may also consider having her speak to a social worker or counselor at the GI office (most children hopsitals have social workers/psychologists who are used to dealing with children with special medical issues/restrictions. Educating your daughter's school and freinds may also help. She is mourning a loss of her favorite foods but also a loss of normalcy and "fitting in." If she feels accepted and is treated just like a normal child (which she is) she will adjust better/faster. Treat her as you did the days before you found out...she's still the same child just with a changing diet....I know it's really hard. As I said I am a mom fo two boys with food issues and I am also a social worker who works with children and families so please feel free to message me and we can talk more about it. She (and you) *WILL* be OK!

((hugs))

Nancy

[Grace'smom]

Hi I have 2 sons both who have medical issues and have had to deal with food restrictions throughout their lives (they are 6 and 9 and have had varying levels of restrictions at different times). I agree that a matter of fact, "it could make you sick" response is important. Also not allowing your emotions to get in the way is important too. I used to tell myself, I would not feel emotional telling them they could nto drink bleach so why do I feel emotional saying they can't eat forbidden foods? Once you think of it like that, it helps to not feel so guilty. You are your child's advocate and protector and as long as you know what you are doing is right and out of love, she will "feel" that. You may also consider having her speak to a social worker or counselor at the GI office (most children hopsitals have social workers/psychologists who are used to dealing with children with special medical issues/restrictions. Educating your daughter's school and freinds may also help. She is mourning a loss of her favorite foods but also a loss of normalcy and "fitting in." If she feels accepted and is treated just like a normal child (which she is) she will adjust better/faster. Treat her as you did the days before you found out...she's still the same child just with a changing diet....I know it's really hard. As I said I am a mom fo two boys with food issues and I am also a social worker who works with children and families so please feel free to message me and we can talk more about it. She (and you) *WILL* be OK!

((hugs))

Nancy

What a caring post. Thank you so much, Nancy. I hadn't factored in the "guilt" part, and w/the bleach example you make perfect sense. I think I will give this a few more weeks and if these meltdowns continue to plague her, we will make an appointment with someone at Children's. I'm probably expecting too much normalcy from her with only 2 wks into this diagnosis. Its going to take some time. Thanks and hugs right back to you~ Emily

[Grace'smom]

I wonder if you could explain to her that if she keeps eating things with gluten in them she may end up getting very sick. You could tell her about different health problems that could happen from continuing to have gluten in her body.

Maybe if she knows someone with asthma or other health problems that are known to be caused by, or link to Celiac disease, and explain that this could happen if you don't take care of her body and that having other health problems could stop her from being able to do things that she really likes to do such as sports. I definitely don't mean threaten or scare her, just tell her some of the facts and it may help.

My almost 5 year old daughter also has Celiac disease and when she asks for foods that she can't have I tell her that those foods can make her sick, so far that has been enough of an explanation for her, but she is a bit younger than your daughter, that's why I thought your daughter might do better with a little more info.

Just a little encouragement about the emotions - it seems that many people have an emotional withdrawal that they go through after going off of gluten for the first weeks or months. It should get better with time - hopefully real soon.

I hope the best through this for you and your daughter.

~Sarah

Thank you for all of that encouragement, Sarah! It really helps to hear from other moms. So appreciative.

[Skylark]

I had "food allergies" that were probably misdiagnosed celiac as a child, so I can sympathize with your daughter. Any time I could make a wish (shooting star, penny in a fountain, birthday candle) I wished for my allergies to be gone so I could eat like other kids. I didn't have obvious symptoms from some of the foods that came up on skin tests, so what I could and couldn't eat seemed very arbitrary. Of course we know now that skin tests are not good predictors of food allergies.

The awful thing for me wasn't not eating certain foods, because I started n the allergy diet very young, as much as being left out. I felt very isolated when I couldn't eat the things other kids were having. I didn't tend to act out, as the stress for me was social situations like school and parties where you wouldn't tend to throw a fit.

My mom helped by making sure I always had a treat when other kids did. She would send me to birthday parties with rice flour cupcakes, and to school with a thermos of Kool-Aid (no milk for me) and boxed lunches of foods I liked to eat. She was really creative, and I grew up on things like honey sesame treats, Tiger's Milk bars, and "cinnamon toast" made from lightly warmed rice cakes with butter and cinnamon sugar.

I had a hard time coping with preschool, and my allergist referred us to a dietitian. I was only four or five so I don't remember that very well. I DO remember lots of chess games with a child psychologist when I was seven or eight. I don't remember what he said or did, but I remember feeling better after going for a while so the conversation while we played chess must have made a big difference.

I hope maybe my ramblings help. I guess my advice from what my mom did is to offer alternative treats, make it clear it's OK to be different from other kids, and don't be shy about seeking a little professional help.

[Grace'smom]

I had "food allergies" that were probably misdiagnosed celiac as a child, so I can sympathize with your daughter. Any time I could make a wish (shooting star, penny in a fountain, birthday candle) I wished for my allergies to be gone so I could eat like other kids. I didn't have obvious symptoms from some of the foods that came up on skin tests, so what I could and couldn't eat seemed very arbitrary. Of course we know now that skin tests are not good predictors of food allergies.

The awful thing for me wasn't not eating certain foods, because I started n the allergy diet very young, as much as being left out. I felt very isolated when I couldn't eat the things other kids were having. I didn't tend to act out, as the stress for me was social situations like school and parties where you wouldn't tend to throw a fit.

My mom helped by making sure I always had a treat when other kids did. She would send me to birthday parties with rice flour cupcakes, and to school with a thermos of Kool-Aid (no milk for me) and boxed lunches of foods I liked to eat. She was really creative, and I grew up on things like honey sesame treats, Tiger's Milk bars, and "cinnamon toast" made from lightly warmed rice cakes with butter and cinnamon sugar.

I had a hard time coping with preschool, and my allergist referred us to a dietitian. I was only four or five so I don't remember that very well. I DO remember lots of chess games with a child psychologist when I was seven or eight. I don't remember what he said or did, but I remember feeling better after going for a while so the conversation while we played chess must have made a big difference.

I hope maybe my ramblings help. I guess my advice from what my mom did is to offer alternative treats, make it clear it's OK to be different from other kids, and don't be shy about seeking a little professional help.

Thank you so much. All of this helps, and you certainly were not rambling. I'm starving for information and input from other parents, so so glad I found all of you on this site. I'm encouraged by the special treats your mom made and that inspires me to do special things for her so she'll feel loved, too. Thank you again. Emily

[sb2178]

As an adult, I'm finding that it's very helpful to turn to non-food "treats" as well as using gluten-free substitutes. Playing frisbee instead of going out for pizza, or seeing a movie instead of dinner out. Maybe that can work for kids too? Does she have favorite outings or little things she collects that you can focus on instead?

And the first few weeks are just REALLY hard. I went out for ice cream the other day and was kinda shocked that I had to have a cup instead of a cone. I never get cups... the cones are the best part... And I'm an adult with very clear understanding of the causal links of gluten = misery.

I think it gets easier. Good luck!

[bbuster]

The grieving is very real, and will get better, but it will always be there.

Maybe you have already done this - it's not clear from your post, but involve her as much as possible. In other words, take her shopping and let her pick out the gluten-free snacks. Let her feel she has some control.

Assure her that you as a family will get through this together. I don't know if you have other children, but regardless, you might want to consider all going gluten-free in the beginning, as a show of solidarity. To this day I eat very little wheat breat, and my waistline is all the better for it!

The other thing I did early on was make it my mission to learn to cook gluten-free. If she likes to cook (or just help), this is another great way to involve her. Let her pick recipes that she wants to try, have her help buy the ingredients, and help make the food as much as possible. I started with Pamela's Baking & Pancake mix - it has recipes right on the bag for chocolate chip cookies and waffles, both of which are easy to make and really good.

The thing my son missed most was pizza. I worked through many not-so-good, and some so-so recipes before I hit on the winner, Bette Hagman's recipe. Now I make pizza once or twice a week, and anytime my son has a friend over - everyone eats it and everyone loves it.

When we have get togethers with friends, I always supply the bread, desserts, and chips - things my son really likes. Our friends will grill something that is gluten-free, and we will each make a casserole that he likely can't eat, but he doesn't care, because there are many choices that he really likes. So his perspective is not focusing on what he can't eat.

Good luck to you and keep giving her all the love and understanding you can.

[Grace'smom]

The grieving is very real, and will get better, but it will always be there.

Maybe you have already done this - it's not clear from your post, but involve her as much as possible. In other words, take her shopping and let her pick out the gluten-free snacks. Let her feel she has some control.

Assure her that you as a family will get through this together. I don't know if you have other children, but regardless, you might want to consider all going gluten-free in the beginning, as a show of solidarity. To this day I eat very little wheat breat, and my waistline is all the better for it!

The other thing I did early on was make it my mission to learn to cook gluten-free. If she likes to cook (or just help), this is another great way to involve her. Let her pick recipes that she wants to try, have her help buy the ingredients, and help make the food as much as possible. I started with Pamela's Baking & Pancake mix - it has recipes right on the bag for chocolate chip cookies and waffles, both of which are easy to make and really good.

The thing my son missed most was pizza. I worked through many not-so-good, and some so-so recipes before I hit on the winner, Bette Hagman's recipe. Now I make pizza once or twice a week, and anytime my son has a friend over - everyone eats it and everyone loves it.

When we have get togethers with friends, I always supply the bread, desserts, and chips - things my son really likes. Our friends will grill something that is gluten-free, and we will each make a casserole that he likely can't eat, but he doesn't care, because there are many choices that he really likes. So his perspective is not focusing on what he can't eat.

Good luck to you and keep giving her all the love and understanding you can.

Wow, those are great suggestions. Thank you so much, you've given me a lot to think about here. She has done some shopping with me, but this summer with school out, I should have her come along every time so she is more involved. I also like your ideas on what to bring to get togethers. Didn't think of that one! Going compltely gluten free would be very expensive for us as a family, I have 5 children, but I am doing some cooking that way, whenever possible, and all baking. I'm trying to incorporate it across the board wherever I can; but actually read the advice of Donna Korn in her Raising Celiac Kids book suggesting that by doing that, it creates a "perfect world" scenario for the kids that may make it harder for them to adjust in the world outside of the home...wondering if you could pass on that pizza recipe or direct me to where I could find it?? THANK YOU! Emily

[Mack the Knife]

Two weeks is not long at all to adjust to the shock of a gluten free lifestyle. I burst into tears at a food market two weeks after I was diagnosed, when I had the realisation that there was nothing there that I could eat - and I'm 36.

There's a children's book called "Cassie Croc has Coeliac Disease" that you could try to track down. It's pretty good and might help.

Do you have a local Coeliac support group. The one where I live has regular kids picnics and parties where kids can get together and meet other Coeliac kids.

[bbuster]

...wondering if you could pass on that pizza recipe or direct me to where I could find it?? THANK YOU! Emily

"My" pizza recipe is from Bette Hagman's book The Gluten-Free Gourmet Bakes Bread. I highly recommend this book if you want to tackle baking. I originally borrowed it from the library, and then bought a copy.

I'll send you the recipe on a PM.

[Ahorsesoul]

I suggest you also go gluten free so there are two people instead of one all a lone. It would be a great boost. I really do not see gluten free eating as doing without. I decided when I went gluten free to find good replacements for the items I really loved. There really isn't anything I can't find or make so I do not feel I am left out. You can do this for your child. Let us know what it is you child wants and I'm sure one of us here can tell you what to substitute.

I was just to the GI doctor last week talking about eating gluten free. He said everyone would benefit from a gluten free diet. He is not a celiac specialist so I was pleasantly surprised by his remark.

Remember there are withdrawal symptoms for a few weeks.

[celiac-mommy]

I'm a little late to the game and you've received such great information. Both of my kids have Celiac. My dd was 4 when she was diagnosed and 2.5 years later my ds was diagnosed. DD is 8 now and never went thru the grieving process. I thought by my son being so young (2) when he was diagnosed that we would avoid it as well, but lately all he tells me is that if he could have 1 wish in the whole world, he wishes he could eat gluten (he's almost 5 now). I think it's because he's the only one at his preschool who has a different lunch and all the kids are staring at him while he eats. I think the issue is, is that they don't want to be eating their crappy processed food lunches and they're looking at his awesome sandwiches made from pancakes, "super" quesadillas, fresh strawberries, etc.. and they want his lunches!

They help with all of the meal planning, they pick what goes into their lunches and snack boxes and we all eat gluten-free in our house, so there's no issue there. I refer to foods as "safe" and "not safe". This seems so work really well for my son instead of telling him he "can't" have it. He also doesn't have much of a reaction when he gets glutened, so telling him it will make him sick doesn't work. I always try to focus on the foods they can eat and not what they can't. I also cook and bake a lot, so whatever they want, I can usually duplicate to be gluten-free.

Parties were an issue at first because I didn't want them to ever feel left out, so I always call the parents ahead of time to find out their menu, talk to them about the "food allergies" and then I send the kids with a duplicate of whatever they're having. For the most part, the kids are the ones who tell their parents "I really want them to come to my party but they're allergic to gluten so we have to have something special for them"

This will get easier over time, and don't be surprised if she sneaks food in the next month or 2. In the beginning, my son once waited until the teacher wasn't looking and ran over to the lunch tables and took a bite of all 15 hamburger buns that had been set at each plate

Good luck and keep us posted on how things go!

[Ahorsesoul]

Example:

One of my dd group home ladies just had a birthday party this weekend. I offered to bring hot dog rolls and a cake for the gluten free ladies so they'd have some birthday cake. I made a Kitty Litter cake. I could hear people talking about it during the party so I know it went over really well. It was special, the girl who's party it was has a cat so she loved it.

I used Betty Crocker yellow cake mix. I added cinnamon, nutmeg and cloves to make it spiced.

Made vanilla pudding.

After the cake and the pudding had cooled, mix them together.

Dump this into a brand new (please) kitty litter pan that is lined with foil or plastic wrap.

Crush a package of vanilla cookies until fine.

Take 1/4 cup of the crumbs and add some green food coloring.

Sprinkle the vanilla cookie crumbs over cake mixture, then the green ones.

Melt 12 little tootsie rolls until soft (5 seconds in microwave).

Roll between hands to make something that looks like kitty poop.

Drop these into the cake and drape some on the side of the pan.

Serve with a brand new kitty litter scoop.

Put down some newspapers and place cake on top.

People who do not like cats may not like this cake.

[bbuster]

I made a Kitty Litter cake. I could hear people talking about it during the party so I know it went over really well. It was special, the girl who's party it was has a cat so she loved it.

That is hilarious! I think I'll have to do that for my daughter's birthday!!

[ciavyn]

That is hilarious! I think I'll have to do that for my daughter's birthday!!

Wow. that is a tough situation, given that she doesn't have symptoms. What clued you in that it was an issue?

As an adult, it's an emotional roller coaster, so I can't imagine being 6 and going through it. But I had a great time discovering all the things I could make for myself, that tasted WAY better than processed foods. And I second the household-gluten-free idea. It is way easier if everyone does it together. (Not to say you couldn't get things when you are away from her, but while at home, make it yourself! it's much easier than it seems). But I started trying all kinds of recipes, and I really enjoyed it.

Also, I committed myself to running for Leukemia and Lymphoma. Whenever I got down, I reminded myself of what others were facing. This is harder for a child, but is there a hospital nearby where she could volunteer to visit children there? Or, for example, as a family we watch Extreme Makeover: Home Edition, and we remind our kids what others have to live with, making our own issues often so trivial. I don't mean deny the grief -- that isn't right either. But help her at a young age, gain perspective that while this is miserable...it is not the worst. This is fixable, albeit annoying. Just some thoughts I had.

Best of luck, and have fun on celiac.com! You will find all kinds of yummy recipes. Her friends will be so jealous that her mommy makes everything from scratch and tastes so much better!

[bbuster]

There are pros and cons to the whole household going gluten-free. Can be quite expensive when you have a large family.

Our household is not gluten-free. But I often eat that way myself, primarily as a show of support, but also I need to lose weight, and I have cut out the lion's share of wheat and processed sugar from my diet (and it's working!).

The point is, you want to support your child. For example, my son's favorite cracker was Cheez-Its. Everyone likes them, but my son liked them the most. I don't buy them anymore, because I don't want my son to sit and watch the rest of us eating them. I buy wheat crackers that my daughter likes the best but my son always thought were just OK, so it's no big deal to him. And now I have a good recipe for gluten-free cheesy crackers that we all enjoy.

Same thing with donuts. The only time my daughter gets donuts at home is for her birthday sleepover party, and then I buy some gluten-free ones for my son.

Once we had some out of town friends visit, and they wanted to go to a local restaurant famous for their huge homemade yeast rolls (as a novelty, they throw them to you!). When you walk in the place, that's what you smell. So my husband and daughter went with our friends, and I took my son to a Mexican restaurant where we could enjoy corn chips and salsa and tacos. And he was very appreciative, and we had a great time, just the two of us.

Things will get better with time, as you work out what's best for your situation.

[Ahorsesoul]

Bev, You are great!

[Grace'smom]

I'm a little late to the game and you've received such great information. Both of my kids have Celiac. My dd was 4 when she was diagnosed and 2.5 years later my ds was diagnosed. DD is 8 now and never went thru the grieving process. I thought by my son being so young (2) when he was diagnosed that we would avoid it as well, but lately all he tells me is that if he could have 1 wish in the whole world, he wishes he could eat gluten (he's almost 5 now). I think it's because he's the only one at his preschool who has a different lunch and all the kids are staring at him while he eats. I think the issue is, is that they don't want to be eating their crappy processed food lunches and they're looking at his awesome sandwiches made from pancakes, "super" quesadillas, fresh strawberries, etc.. and they want his lunches!

They help with all of the meal planning, they pick what goes into their lunches and snack boxes and we all eat gluten-free in our house, so there's no issue there. I refer to foods as "safe" and "not safe". This seems so work really well for my son instead of telling him he "can't" have it. He also doesn't have much of a reaction when he gets glutened, so telling him it will make him sick doesn't work. I always try to focus on the foods they can eat and not what they can't. I also cook and bake a lot, so whatever they want, I can usually duplicate to be gluten-free.

Parties were an issue at first because I didn't want them to ever feel left out, so I always call the parents ahead of time to find out their menu, talk to them about the "food allergies" and then I send the kids with a duplicate of whatever they're having. For the most part, the kids are the ones who tell their parents "I really want them to come to my party but they're allergic to gluten so we have to have something special for them"

This will get easier over time, and don't be surprised if she sneaks food in the next month or 2. In the beginning, my son once waited until the teacher wasn't looking and ran over to the lunch tables and took a bite of all 15 hamburger buns that had been set at each plate

Good luck and keep us posted on how things go!

Thank you for such a warm and creative post. That information sure helps, and I loved the story at the end about him eating the hamburger buns!!! I found my daughter hiding in the pantry last week, trying to get the lid off of a jar of animal crackers. Makes me feel better to know I'm not alone and that this is all normal. Thank you! Emily

[Grace'smom]

There are pros and cons to the whole household going gluten-free. Can be quite expensive when you have a large family.

Our household is not gluten-free. But I often eat that way myself, primarily as a show of support, but also I need to lose weight, and I have cut out the lion's share of wheat and processed sugar from my diet (and it's working!).

The point is, you want to support your child. For example, my son's favorite cracker was Cheez-Its. Everyone likes them, but my son liked them the most. I don't buy them anymore, because I don't want my son to sit and watch the rest of us eating them. I buy wheat crackers that my daughter likes the best but my son always thought were just OK, so it's no big deal to him. And now I have a good recipe for gluten-free cheesy crackers that we all enjoy.

Same thing with donuts. The only time my daughter gets donuts at home is for her birthday sleepover party, and then I buy some gluten-free ones for my son.

Once we had some out of town friends visit, and they wanted to go to a local restaurant famous for their huge homemade yeast rolls (as a novelty, they throw them to you!). When you walk in the place, that's what you smell. So my husband and daughter went with our friends, and I took my son to a Mexican restaurant where we could enjoy corn chips and salsa and tacos. And he was very appreciative, and we had a great time, just the two of us.

Things will get better with time, as you work out what's best for your situation.

Thank you, Bev. We found out she had celiac quite by accident. During a thyroid screening (she's hypo thyroid) a staff member in the doctor's office was copying over the dr's lab orders onto a new lab form, and "accidentally" filled out the bubble for a celiac screening. Can you believe it? Her endocrinologist was stunned when he wound up with positive results for a test he never ordered. She was retested twice within the next 6 months and both times the numbers rose, so an endoscopy was done at the end of May. And here we are. You gave me some wonderful advice and I appreciate all of your kind and thoughtful input. Emily

[CeliacMom2008]

Hi everyone

I am reaching out looking for support from moms and dads of kids with celiac who struggled emotionally. My 6 yr old daughter, Grace, was diagnosed two weeks ago. I expected this to be a difficult transition, but I wasn't prepared for the grieving she is experiencing over the radical diet change. Every few days, she gets mentally "stuck" on something containing gluten that she really, really wants to eat and thus begins a downward spiral of tears, and begging her Dad and I to "give in" and let her have the treat. (Of course, we don't, and try and re-direct her to other can-do options). The tears can go on for up to an hour, with her distress that we won't just give the snack to her. I'm struggling with the position she has put me in as dictator of what is and is not allowed. I wanted to avoid having to say "no" to foods, so I've instead had her read labels with me to look for the word "wheat" or other alert words. That way, we could discover the answer together, and the pressure wouldn't fall on me to be the answer source. No matter, the tears are still on full-force when she hears that it's got gluten in it, and she literally BEGS for the snack. We've gone to the library and even found a book about a little girl with celiac disease. She loves the story. I've loaded my pantry with gluten free snacks. I just think this is going to take time, time, time. In the meantime, what words that you used help your child when they first began this diet and asked for gluten? She did not suffer many physical symptoms of celiac, so I can't point out to her that she is feeling better, there isn't an obvious difference. Please help me guide her lovingly through this process with any ideas that worked for your children when they were distraught. I'm not used to the meltdowns and feel like the bad guy. Thank you, Emily

The ONLY food we have found that my son used to like that we can't replace gluten-free is licorice. When he asks about a food I haven't replaced I just say "That sounds fantastic! I'm sure I can find a recipe for a gluten-free version. I'll get a recipe and we'll make those." Then follow through. Sure they have to learn that it might not be right this very minute, but they also learn that hanging out in the kitchen with Mom can be fun. We've made gluten-free donuts, mozarella cheese sticks, all kinds of cakes and cookies, cheesecake, breads, even soft pretzels. And when we've had a flop we just do an "Oh man that didn't work! We're going to have to keep trying!" The thing is to teach her to roll with it.

Also, we were really nonchalant and up beat about the diet. Our house when gluten-free. At first we NEVER ate anything in front of him, talked about any G food in front of him, etc. Eventually you have to get past that, but the first month or two you need to make it as easy as possible. After a few months (don't remember exactly when), my son came home from school one day very sad saying the diet was really hard. At this point we were ready for tough love and he got a quick, "No, dying is hard. This is just about food." I would only recommend you use that once and it must be timed correctly. We still have bad days and we comfort and work through them, but thankfully we've met some really terrific people, helped some great people, had some fantastic family moments, etc. that we can all say would never have happened if he hadn't been diagnosed. When he has a really bad day we can pull out the, "Yeah, but if you didn't have Celiac you'd have never met _______, and can you imagine not knowing them?" That really helps us. Life's about tradeoffs...