How Do I Tell Her?!

[Mackenziesmom]

My daughter was diagnosed with Celiac Disease today, and I'm panicking!! How do I explain it all to my 8 year old and make her understand? We've only done the blood work portion of the tests and are returning in a few weeks for the "Scope down the Throat" (as I call it) test. How do I explain THAT to her?? Any help would be GREATLY appreciated!

[celiac-mommy]

My dd was 4 going on 14 when she was diagnosed. You have to be honest with her but focus on all the things she can eat and not what she can't. It's very important, I think, to not make a huge deal out of the diagnosis. It's very important to make them understand that it's a lifelong issue and 1 cheat can cause damage, but not to freak out about it so that she freaks-but to be calm, matter-of-fact and compassionate when she gets upset. (sorry if I'm rambling) As for the endoscopy, it really is pretty easy and she won't remember much, if any, of it. All mine remember is playing in the kids room a the hospital before and getting to eat ice cream and popsicles the rest of the day (or whatever they want). The worst part is getting the IV, but they usually use a topical novacaine before to lessen the pain. You can also request a prescription of it from her dr if they don't offer that-if she doesn't like the poke....They will give her some medicine in the IV to make her sleepy and 1 to make her forget. It lasts less than 30 minutes and that's it.

Since you have a few weeks to prep for the gluten free lifestyle, make a list together of all the foods you will fill the fridge and pantry with, find recipes of foods she likes to eat, and if possible, the whole house should go gluten-free with her. We've done that in our house and it's really a lot easier for me-only 1 menu to plan, no cc issues etc... plus it gives her more support and less ostracized. I love to cook, and I can tell you from my experience, if it's only gluten that she has an issue with, there is only 1 thing I have not been able to duplicate (the dreaded light and flaky buttermilk biscuit ) I've come up with a duplicate for every other recipe and 99% of the time it's as good or better as its gluten counterpart.

Good luck to you and your family, the 1st few months are the hardest and then it will be 2nd nature for you all.

[Darn210]

I told my daughter that "we found out what was wrong" and it means that she won't have to keep taking medicine (she did for awhile for acid reflux and gastroparesis) but that we won't be able to get her favourite foods at the restaurants any more. We would find gluten free versions of all her favourites either at the store or we would make them at home . . . and that is EXACTLY what we did.

My daughter didn't even have to be awake for the IV . . . they gave her an inhaled sedative and then put in the IV. You might want to check how they will do it so you can prep her appropriately. We told her that they would make her sleepy and she wouldn't even remember after it was all over. We told her they would send a very tiny camera into her tummy . . . spent a long time on how tiny and special and expensive this camera was and only doctors get cameras like this yaddah yaddah yaddah We told her that they would take pictures and that we would probably get to keep some (which we did) and she could take them to school (which she did) . . . which "grossed out" her classmates and tickled her pink. We told her that it "might" make her throat a little scratchy but probably not as bad as a sore throat from a cold and that if it was, she could have some ice cream. Her throat didn't bother her much at all and yes, she had plenty of ice cream.

Make sure you don't rush her time in the recovery room. The anesthesia can give them a pretty bad headache and they expell it while they are "sleeping it off". The people in the curtained room next to us actually woke their daughter up so they could leave and she felt terrible and was crying. We actually heard the nurse telling them not to wake her up. She left and within minutes they had her up. Our daughter woke up, whined for about a minute, went back to sleep, woke up about 45 minutes later and was right as rain but very much ready to go home at that point.

You know to keep her on gluten until after the scope, right??

Good luck and let us know if we can help you out with some recipes or product recommendations.

[Generic]

My only thought is don't do what my mom did. I was 13 at the time, she took me out to eat, told me order whatever I wanted. As I'm sitting there wolfing down a big stack of pancakes she drops the bomb. I started crying, then realized I can't eat them, which was my fav at the time. I point this out to her and she says just eat them anyway. She could have waited or not taken me to eat.

[Fiddle-Faddle]

If all the bloodwork was clearly positive, you might not need the endoscopy, unless the doctor has reason to look for something else.

More doctors are now accepting the positive bloodwork plus dietary response as a definitive diagnosis these days, as it IS possible to have celiac disease and NOT have villi damage (which is what they look for in the endoscopy).

However, many doctors want to see the intestines. But don't let them tell you that she can eat gluten if the results are negative--if she is making antibodies to gluten, then gluten is toxic for her, whether or not it has already damaged her intestines.

As for explaining the diet, is there a celiac support group in your area? It would be great to hook her up with other kids her age who are dealing with this (have a gluten-free cookie baking party!)

Two of my kids were so happy to be rid of their stomach aches and eczema that they didn't have a problem with the diagnosis, especially when I promised them that I would make a gluten-free, GOOD-TASTING version of whatever they felt like they were missing. The other (who had the fewest symptoms) was skeptical, but has been very, very good about.

And I've kept my promise.

[Mackenziesmom]

Thank you all for all of your great advice!! My husband was diagnosed in 1/06 so I have been preparing his foods seperate from ours (don't worry- no cc...i even use different tupperware to store his leftovers in!) since then. We broke the news to her last night- and she was pretty upset. Cried over what she thought was a loss of pancakes! I re-assured her that there were VERY few things that I couldn't buy or make that would fill the shoes of all the things she yerned (<~ sp. check) for!! After we talked about it and ate dinner (a normal weekly dinner we eat as a family that is gluten-free) her and I left Daddy and her 2 sisters to go to the grocery store. I showed her the isles I shop for Daddy's stuff and told her about how it wasn't going to alter her life too much. She picked out some Pamela's choc. chip cookies & ginger snap cookies (BTW- THEY ARE AWESOME!!) tasted them, and said "If these are gluten-free....gluten isn't all that great, b/c these are good!" LOL! She's worried about school. She's in 3rd grade and worried that kids are going to make fun of her when they offer her cake and she turns it away. We talked her through it a little more- and I think she's OK now!

If anyone has a recipe for some good bread (not the ener-g brand type....it's like cardboard!), I'd love to have the recipe!! I know she would enjoy a PB&J !!

Thanks again to all of you,

Jaclyn in Texas

[Mackenziesmom]

As for explaining the diet, is there a celiac support group in your area? It would be great to hook her up with other kids her age who are dealing with this (have a gluten-free cookie baking party!)

How do I find out if there is a support group for kids in my area?

[Fiddle-Faddle]

You can try googliing "Celiac _________) with the ________ being either your town, or the closest large city.

If you have some kind of a health food store, sometimes they have that kind of info, too.

You can also call various celiac-specializing GIdocs, and ask if they have any info on local support groups.

Good luck!

[Fiddle-Faddle]

If anyone has a recipe for some good bread (not the ener-g brand type....it's like cardboard!), I'd love to have the recipe!! I know she would enjoy a PB&J !!

Thanks again to all of you,

Jaclyn in Texas

Pamela's has a really good bread machine mix. You can try it or google "Pamela's baking mix copycat recipe" and use that.

ALL the recipes on www.betterbatter.com that I have tried have been fantastic.

[Fiddle-Faddle]

Kinnikinnick and Whole Foods (aka "Whole Paycheck") make reasonable (but expensive) breads. You can order Kinnikinnick's directly from their website, I think.

The following is my adaptation of a recipe that was floating around here a while ago. I make it in 12 four-inch round cake pans, which are PERFECT hamburger-bun or sandwich-bun size. It comes out looking and tasting like GOOD whole wheat bread. If your daughter is more of a white-bread person, you can use cornmeal instead of flax meal (but the flax meal is a lot healthier). Almond meal would work, too.

gluten-free

[cruelshoes]

How do I find out if there is a support group for kids in my area?

Here is a link to the ROCK group support group finder.

My son is 10, and he was diagnosed when he was 6. He has taken it like a champ, and never complains. I think how we act about it goes a long way to how they will act about it. Our family motto about the whole thing is "let's make it work!" When he was diagnosed, I promised him that he would never have to miss out on anything, and he can still do all of the things he wants to do. Sometimes that means bringing our own food, and that's OK. He also knows that if there is ever an activity that has unexpected food and he can't eat it, he gets an even bigger and better treat when he gets home. He feels sorry for the kids that have to eat those nasty gluten cookies!

One of the best things we did was getting his teachers in the loop right away. We immediately sought a 504 plan, and you might want to think about that for your child. We keep a snack box in his classroom for times when there is a treat he cannot have. His teachers have been pretty good at communicating with me when there is a class party, but the snack box is a great safety net for when things come up unexpectedly. I always look for opportunities to help out in the class. One year when they were doing a cookie decorating activity, I volunteered to make gluten-free cookies for the whole class so my son would not be cross contaminated. The cookie decorating activity went great, and the kids scarfed the cookies without even knowing or caring that there was no gluten in them.

It sounds like you already have the gluten-free cooking down, so you are already one step ahead of where a lot of us started with our kids. With a few small adjustments to her routine, your daughter will be a pro in short order as well.

[Darn210]

We have the "Emergency Snack Sack" at school also . . . and its full of stuff the other kids want . . . tootsie pops, fruit chew snacks, fritos, etc.

I try to work the classroom parties, too and I find out what is going to be served and try to serve an equivalent. Last valentines day they were serving sugar cookies. Well, I didn't know if they were going to be heart shaped or iced or have sprinkles. I wanted to make sure my daughter's looked just as good so I brought her an iced cookie with a big icing heart and little flowers. Ends up the other kids got plain sugar cookies. I put my daughter's cookie in front of her and the kids at the table all stopped and stared and then I heard the best line . . . "That's her cookie??? Hey, that's not fair" . . . Still makes me happy to think about it.

Oh, and for the birthday pizza parties . . . I now send her with the Snack Sized (doesn't include the drink or candy) Lunchable Nachos. Something that all the other kids would eat and she doesn't feel different. I also send a gluten free cupcake with sprinkles on it.

[CeliacMom2008]

We like Gluten Free Pantry Sandwich bread. But my son LOVES PB&J on Pamela's pancakes. Just to give you another option.

Good luck with everything!

[Mackenziesmom]

We like Gluten Free Pantry Sandwich bread. But my son LOVES PB&J on Pamela's pancakes. Just to give you another option.

Good luck with everything!

Last night my husband and I were in the kitchen from 6 (when we got home) until 10 doing nothing but cooking, cooking, cooking, and cleaning! I made the Pamela's Bread, and he tried 2 different types of pancake mix! The first batch...don't remember the brand, but it came in a box....HORRIBLE! The second batch was the Pamela's brand (should have stuck with that to begin with- EVERYTHING we have tried from her has been AWESOME!). THEY WERE DELICIOUS! My husband has ALWAYS been the pancake chef in the house- so he added just a little vanilla and some cinnamon...they were to DIE for!!

The bread- well...it took a LONG time! You had to get it all mixed up (probably 10-15 minutes), then let it sit for an hour, then bake it for an hour. And once it was ready to go into the pan- I realized I had let someone borrow my loaf pan and all I had was those mini-loaf pans...so it fit into 3 of them. When I made my daughters lunch this morning- on the tiny slices...she just thought it was the funniest thing ever!! She was looking forward to eating it!

Thank you for all of your help! I really appreciate it!

~Jaclyn in Texas

[ek327]

My daughter was diagnosed this summer--with an endoscopy after postivie blood tests. she has adjusted beautifully. her teacher is great. I googled gluten free, teacher and found a really nice information sheet to print off for her. Luckily, I have been gluten-free for 4 1/2 years, so it wasn't completely new for her.

cooqi makes a bread called Ellies' bread that my Emma loves--toasted, of course. this is by far her favorite. Glutino makes an english muffin that makes the best bun for cheeseburgers, etc.

She also did great for the endoscopy. they gave her the gas first--and the IV and further bloodwork was done after she was asleep. Ask the surgery center if they have a child life specialist--they are wonderful for preop teaching for kids.

good luck.

[idahoengineer]

My son (12 yrs) was diagnosed in August about 3 months after I received my diagnosis. I ordered a book called "The Gluten Free Kid; A Celiac Disease Survival Guide" by Melissa London. It is funny, illustrated (reads almost like a comic book) and written for the "tween" age range. She gives all the info on what the disease is and what you can eat without any "poor me, this is the end of the world" stuff.

Good luck!

[Mackenziesmom]

My son (12 yrs) was diagnosed in August about 3 months after I received my diagnosis. I ordered a book called "The Gluten Free Kid; A Celiac Disease Survival Guide" by Melissa London. It is funny, illustrated (reads almost like a comic book) and written for the "tween" age range. She gives all the info on what the disease is and what you can eat without any "poor me, this is the end of the world" stuff.

Good luck!

Thank you so much! That will be especially helpful for her!! We are just starting the "poor me" phase and it's starting to run it's course with me! She has 2 younger sisters (1 that is waiting to be tested) and whenever we are packing lunches and stuff- that is all i hear!! "Guess I can't have that" or "those USED TO BE my favorite <frown>"! I don't want to petty her and let her use it as a crutch- so I have just been ignoring the complaints and addressing them with alternatives! Hopefully the book will help her out! Thanks so much!

~jaclyn in Texas