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10 Tips to Empower Celiac Children to Live Gluten Free

It’s hard to imagine. In six years my celiac daughter, Emma, will go to college — living a gluten free life away from her sheltered little gluten free cocoon we’ve put together for her.  Yes, someday I will need to stop being the go-to gluten-free food encyclopedia and trust that she can keep herself healthy.

Six years may seem like forever away, but before I know it, it will be here.  And what will we have taught her?

Top 10 Tips to Empower a Gluten Free Child

These are in no particular order– some may be big picture, some may be very specific, but I hope by the time “we’re done with her” she’ll be ready to face the world as a strong gluten-free woman.

1. Speak up when something’s not right. This goes for many things in life actually, but when it comes to celiac disease, not speaking up could make you sick.  So far, this has been a challenge, Emma isn’t even correcting her teachers who are mispronouncing her last name (it’s Lezh-AY, not LEG-ger, LEE-ger, or LEDG-er).  But we continue to work on it.

2. Know your ingredients. This goes for gluten free and gluteny ingredients.  She needs to be able to look at a label and based on that, decide of she can have it.  She did this for the first time with a “Fudgesicley” ice cream treat on Tuesday– with success.  She’s 12, so I am happy to see signs of her taking control.

3. Don’t let another adult try and tell you differently. I find even adults my age, younger and older try to explain gluten free to me  and they sell it like they have experience, when in actuality, they only know a small amount or nothing at all. These could be sales people, friends’ parents, or even a restaurant server. Don’t let these people steer you away from what you know.  If in doubt, don’t eat it.

4. Learn how to tactfully turn people down when they offer food. You can go with the truth, “I can’t eat it if it’s not gluten free” (this can be turned into an educational opportunity).  Or perhaps a white lie, “I already ate, thanks for offering”.

5. Learn how to manage that dreaded pizza party. How many times in high school or college did YOU order pizza after a basketball game or on a Friday night with a group of friends?  Exactly. It’s a whole new challenge for gluten-free kids– one we haven’t had to deal with yet.

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Sure, Emma’s gone to birthday parties where there is pizza, but when you’re younger, I (still) call the mom, find out what they’re eating, I bring something for Emma that she likes better than pizza and we’re all good.  But when she’s 17 or 21 and everyone’s going out for pizza, she will have to make the decision to speak up (see #1) or just let it go and not eat or even worse, eat the gluteny pizza and get sick?   If she speaks up, what does she say?  “I can’t eat there, let’s go to another place with gluten free pizza”?  Or does she say, “Let’s just go to my house and find something there”?  Since that is one we still have to conquer…feel free to leave comments/tips below with your suggestions on what you or your child has done.

6. Be grateful to people who try to accommodate your gluten-free needs. There are times where people will go out and buy gluten-free food for you or even try making something.  How do you respond?  We’ve been working on this for a few years with Emma.  If you deem it safe, eat it.  I don’t care if it’s something you wouldn’t normally eat– try it and be very verbal in your thank yous.   It takes a lot for people to accommodate gluten-free diets.  If you deem it unsafe, then that’s tricky.  Be grateful that they tried and tell them thank you.  But find a way not to eat it.  If you can explain to the host why you can’t eat it (without insulting them of course), that is the best way to go.

7. Plan and work through a weekend (or weeklong) trip with a friend’s family. Kids get invited to go to cabins, vacation homes, weekend trips with their friend’s families all of the time.  So how will the gluten free child handle organizing it with the friend’s family?  Well that can be tough.  Emma already has some friends whose parents have learned how to feed her.  Some always have certain treats on hand that they know Emma can have.  Which is awesome!  Others may not know much about gluten-free diets, cross contamination and how sick she can get.

I think the best way here (if I or my husband isn’t getting involved), is to talk with your friend about your concerns and then two of you go and talk to the parents together about accommodating the gluten-free diet (see what they’re bringing, volunteer to bring supplements you can eat, find out if there will be any dining out).  If the parents you talk to aren’t getting it….that’s when I would hope the child (in our case, Emma) would choose not to go.

8. Learn how to shop with gluten-free smarts. I am only in the early stages of this Emma.  It is cheaper and healthier to choose fruits, vegetables, and fresh meats at the grocery store..they’re naturally gluten-free!  But what about those breads and fun gluten-free treats like cookies and cake?  Well it’s least expensive to buy the ingredients and make it.  Plus you have control over the ingredients — you can make it healthier and better tasting with some great whole grain gluten free flours that are available.  If that’s not possible, buying several items at one time (ie through Amazon or other online retailers) is a good way to save money  on gluten-free foods.

9. Get COOKING! My daughter doesn’t have an interest here, plus I am a control freak.  So this is a challenge for me.  But she MUST learn how to cook for herself.  Buying those processed foods are so bad for all of us.  This needs to be a priority.

10. Have Fun; Enjoy Being Healthy! We know it is tough managing a diet at the age of 12 or 17 or even 23!  Especially when you see all your friends eating whatever they want.  My suggestions to my daughter would be: always have a stash of your favorite gluten free foods (hers would be popcorn and cereal),  learn ways to make your cooking taste like the best thing ever, and …uh…don’t kiss a boy who just ate gluten… :)   Just had to add that in there…..

Good luck in preparing your celiac child for life.  If you have some real-life examples we can learn from please comment below.

As always, welcomes your comments (see below).

Spread The Word

4 Responses:

Wendi Brant

said this on
20 Jul 2011 7:54:28 AM PDT
Thank you for this great post. My daughter and I are gluten free because of celiac and it is so easy to do it all for her. She is 12 also and has ZERO interest in cooking. And while it has only been one year since our diagnosis I have been introducing her to cooking. But I hadn't even thought about teaching HER to shop, dine out and make "demands" that people with allergies have to do everyday. This post has reminded me that I have to prepare her to live on her own in the world, not just in my house.

Amy Leger

said this on
27 Jul 2011 8:49:23 AM PDT
Wendi, I am so glad you enjoyed it. It is true, we need to prepare our children to live in a gluten filled world! My Emma is big into soccer and we ended up getting her a smart phone because she can be more independent now that she's 12 1/2. She can check online first, and then call me if she's unsure about an ingredient, restaurant or something else. It is just one more step in that direction.
Of course we also have to work on building their confidence and education so they can stand up for themselves when we're not there...
Thanks again!

Terri Streetman

said this on
09 Aug 2011 12:17:31 PM PDT
Hi Amy,

Thanks for the great reminders! I have a 13 year old son with celiac. We both eat GF and you are right that the most challenging part is going to friends' houses. My son loves eggs and decided to learn as many ways to cook them as he can. He jokes that he will one day open 'austin's awesome eggs' shop. Now when he goes to friends houses, if he can't eat what they are serving he just offers to make himself some eggs! The moms all love it and he's getting quite creative with his omelets. Good luck to you and your daughter!

jp town

said this on
14 Aug 2011 5:31:42 PM PDT
Hi going out for pizza...I don't know where you are located but here in KY we have 2 pizza chains that sell gluten free pizza...Hometown Pizza and Puccini's. If you don't have a pizza shop in your town that does, visit your favorite one and put in a request that they add it to their menu...encouraging them that they will get ALL the gluten-freebies customers in town from competitors!! If that fails, contact the pizza chain CEO's or Customer Relations at their headquarters until you connect with one that is interested. Another really fun option is to keep your own gluten free pizza crusts in your freezer & fridge. It tastes SO MUCH better to make your own pizzas at home and add as many toppings as you like!! Friends and family can really have fun making their own pizzas at home!

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All Activity Celiac Disease & Gluten-Free Diet Forum - All Activity

If you're going to continue to push for a diagnosis stay on gluten! A break could lead to a false negative. It's a lot harder to go off it and then go back on...

I still prefer steaming, but I wash my white rice throughly. I purchase California rice which has a lower level of arsenic. Moderation is key to most everything! ?

I eat pretty much grain free just fine, I eat fats instead. But on a side note I posted some specialty and grain free options as of late in the food alternative page where I list companies and food product alternatives. I honestly just welcomed bread back into my life, I found a company that makes grain free bread out of nut flours. Given you have to toast the dang bread to use it well but seems to work decently. Pasta there are carb free versions out there, and there are ones made with quinoa, buckwheat, or other grains, I even know one company that makes nut flour based ones. You can get these gluten-free options and avoid the rice. As to levels of arsenic they do test foods for these, and all should be safe, the trace amounts and the sheer amount you would have to eat to get effected is staggering, a bit of rice will not hurt you regardless if your concerned I know gluten-free watchdog does arsenic testing on products you could check and find the "safest ones" for your concerns.

I've forgotten them, just remember the good stuff. Weekends in Baja or Vegas or up Pacific highway to see the Redwoods and Frisco. Watching the sunrise at Mount Soledad and watching it drop into the Pacific in the evening. Carne Asada Burritos on Garnet* Solana beach ale* Gorgeous women entranced by my exotic accent, humboldt county weed, raves at the romper room, *1.99 are you out of your mind Denny Breakfasts, Christmas on the beach, *Beers in the gaslamp quarter. I need one of these * which by the power of my imagination have magically become gluten free AANNNYWAAY... Arsenic in rice. Yeah.

Oh, it definitely struck me as very odd! It also says "no significant increase in intraepithelial lymphocytes". That's their favorite word I guess! My blood work pre-biopsy also showed increase lymphocytes and my primary doctor said it usually means increased inflammation. Doing all the things I can now---filing a complaint, I've emailed my doctors to tell them I'm upset and don't think I received proper care, I'm in the process of trying to see a naturopath that diagnosed a friend of a friend w celiac. I'm going to see if i can get the other blood work done with them---and I've been gluten free for a week and a half!