It will be three years in January since Samuel was diagnosed with Celiac Disease *update 1/19/06 (it’s now five years). Samuel has lived more than half of his life gluten free, and in fact, really has no memory of ever eating gluten. It really is a blessing that he was diagnosed so young as this isn’t just a choice, but rather is simply a way of life for him.
That being said, living gluten free has been a new adventure for me. I haven’t had gluten since he was diagnosed as well, and I’ve had to learn how to thrive gluten free in a gluten full world. And trust me, you will find normal.
Here are ten things I’ve learned about raising a child gluten free.
1. You mention the words gluten free every day. I’m writing this post at 7:30 in the morning. Besides typing the words gluten free I’ve also heard Samuel ask for his gluten free bread and his brother state not to put the knife in the peanut butter that is only for the gluten free bread. (You need to get separate containers or never ever double dip. Also, if your entire house isn’t gluten free you’ll need a separate gluten free toaster.) When one lives gluten free one talks about gluten. When Samuel was little he used to say me gwooten fwee! For him, that’s a normal part of his life.
2. You quickly learn which boxed cereals are gluten free. And to not apologize for the 90% of the cereal aisle that is gluten full. In the beginning I used to dread bringing Samuel down the large gluten full cereal aisle of colorful packaging and kid’s characters. Now? Now we go down the aisle, he asks if it’s gluten free and I simply tell him nope and we grab one of the five or so varieties of Chex Cereal. I’ve just learned to be matter-a-fact about what he can have and cannot. There are no options, no cheating allowed, so it is what it is. And, grin, it really does make shopping for cereal quick and easy.
3. Kids still don’t eat the crusts on the bread. Even on fabulous gluten free bread. Now, as I finish typing this, while Samuel is upstairs playing with legos, I am looking at a super cute plate with crusts left on the gluten free bread. What is it with crusts? *update: even at age six he still sends home his crusts from school.
4. You smart phone is a valuable resource. There are apps that will scan food that will tell you if it’s gluten free. I have looked up websites so many times on my phone – I’m the gal in Costco that may look like she’s texting, but in reality, I’m typing in the words gluten free + whatever company I’m searching. And don’t overlook calling companies. However, oftentimes, they have the same resources as the website. In those times I look at it as an opportunity to exercise patience and to express thanks when a company goes above and beyond and labels their product gluten free. Remember food manufacturers are only required to label the top eight food allergens – and gluten isn’t one of them. They’ll list wheat, but there can be many hidden sources of gluten. Be careful.
5. Leaving them in classes can be hard. Truth, it just is. He can’t have any gluten full snacks, often times I have to bring him another snack that is different from everyone else’s snack, and he can’t ever play with playdough. That one is still challenging for me. I have to be very adamant that Samuel cannot have even a cheat day with regards to gluten. I’ve learned to bring a snack, to verify that there is no playdough – and going beyond that to ask that they do NOT play with playdough while he is in class unless they provide gluten free playdough. Not only is there tremendous cross-contamination risk, but I don’t want him to be the one kid isolated and not able to participate in a project. It’s all about grace and education. By the way, here is a gluten free dough we’ve used (you can make your own as well).
Soyer Gluten Free Dough *update: Samuel is in Kindergarten and I have no worries with him. He is hyper careful with his food and his teacher is amazing.
6. They don’t know what McDonalds is. Seriously. I remember going to a well child checkup and one of the questions was how many times a week does your child have fast food? And I checked none. I guess it’s a cool benefit – he, by necessity, will rarely experience fast food. Now, that being said, more and more chains are recognizing the importance of providing gluten free options. But you have to be diligent, to make sure they use a dedicated fryer for their fries (if they’re gluten free – McDonald’s fries are not), and to weigh cross contamination concerns. But, in my house, it’s strange because the powerful golden arches brand isn’t recognized by my four year old. *update – now at the age of six he knows what McDonalds is but also knows he can’t get anything there.
7. Baking feels like chemistry at times. Okay, okay, okay…truth…most of the time. Baking gluten free is so different than regular baking. Gluten is the binder that keeps items together and gives that awesome elasticity texture found in bread. In order to balance that one must use a variety of different flours and blends. Words like xanthum gum, tapioca starch, guar gum, and flour blends become normal talk while baking. And have patience. Yes, patience. And learn to be grateful for what works. Like these pumpkin bars of mine -> gluten free pumpkin bars I also love this cookbook that you use with Gluten Free Mama’s flour. Gluten Free Mama’s Best Baking Recipes
8. The words modified food starch and natural flavorings become your nemesis. Could those label words be any more vague? When in doubt – don’t buy it. Unless you can research it and verify that it is for sure gluten free. I love the companies that go the extra mile to label their product gluten free. Call them, thank them, purchase their products. It used to take me double the amount of times to go grocery shopping thanks to poorly labeled products. Besides the apps, smart phone search, and phone calls I’ve found this book -> Cecilia’s Gluten Free Guide to be a valued item in those initial sifting through the gluten full to find the gluten free shopping days.
9. You become an advocate. Yes, yes you do. For two years I talked with my Target about getting Udi’s Gluten Free Bread on their shelves. They now have it. At my local grocery store the gal in the Natural Food Section will ask me what is good and what to order. I’ve been working to try to get Starbucks to carry gluten free food. I’ve talked with the pharmacist about the importance of labeling meds as gluten free (think about amoxicillian – what’s the binder?). I network with companies when I travel. I write and talk about Celiac Disease Awareness. And, in just over a week I will be speaking in Florida at FPEA about Raising a Child Gluten Free in a Gluten Full World. Truth? You, too, can become a voice for gluten free living. For Samuel? It’s not a trend. It’s a matter of life.
10. You find normal. Yes, this. I always end with this when I’m talking about gluten free living. Normal can be found. It’s a new normal, but it’s normal. Samuel has Celiac Disease, but do you know what? I don’t like to think of it as a disease – for him – eating gluten free is life, health, and vitality. In fact, My good friend Dan Morris has told me to not think about Celiac Disease as a disease, but to think of it as a way of life. We’ve chatted about the truth that if this world was sans gluten then Samuel wouldn’t have Celiac Disease as it wouldn’t exist. Truth? He’s healthy. He just can’t eat gluten. It’s a normal that’s full of gluten free awesomeness. Think about it that way.
Ten gluten free truths. Are any of you raising a child gluten free? What would you add?
Today’s photos? A mixture of real life live from the instagram feed.Find me there at finding_joy
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It really surprised me that McDonald’s fries have gluten in them! I never would have guessed? Did I ever tell you about the fooducate app? The main app is free but they have an additional one for gluten and food allergies. It’s $10 but could save you a lot of time. You scan the bar code and all the information pops up!
Nahum 1:7 The LORD is good, a strong hold in the day of trouble; and he knoweth them that trust in him.
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I would add the importance of educating your child (at the level they can understand). My son was gluten free before his 2nd birthday and at first we tiptoed around it and just kept foods away that he couldn’t eat, didn’t go out to eat, etc. Then I realized this is his life. He needs to know. So I explained it to him. What was going on with his body. What caused it. What “hurts” his belly” and what is “gluten free”. He at just two knows the words “gluten free” and knows what they mean. At 2 he asks, “Is this gluten free” and accepts it as you mentioned when he asks and I say no. No matter their age they get it and it gives them ownership and control. I was afraid to expose him to it all thinking it would be confusing or he wouldn’t understand why he had to change. But he gets it.
I love “Baking feels like chemistry at times” lol. I love having my non-gf educated friends over when I bake. They look at my 12+ containers of various flours, starches, gums, etc, in pure amazement as I precisely measure each and every ingredient to make what would be a typically easy gluten full cookie, cake, bread, etc. Gluten free baking is definitely a science!
I loved this post. There are 2 big things for me in raising my children gluten free.
1) encouraging them not to waiver. I teach my children that they are not to take food from anyone, no matter if it is something they can eat. No one can force them to take anything no matter their argument or relationship to them.
2) encouraging them to accept differences. We all are different. They don’t eat what others eat and that is ok. So if they go to a party or to church, they will not eat what others are eating or play with play dough like the other children because they contain gluten and they don’t have to feel bad about it.
I would also add that no one really seems to understand the importance of not cross contaminating their food. Other people don’t think twice about double dipping the peanut butter knife, or using the same utensil for their wheat cereal as your kid’s gf rice cereal. And, other parents or friends will try to make stuff that is gluten free for them, however, they don’t fully understand that there is gluten in soy sauce, graham crackers, or salad dressings, and that you can’t just pick out the croutons from a Wendy’s salad.
Yes yes yes.. Thank you for that insight Laura. 🙂
i always just bring food for him everywhere because people have tried to have gf choices but then I have to ask them a million questions and usually find out he can’t have it anyway. Then they have spent extra money to buy crappy gf brownies that no one will eat and he can’t eat. Then, you’re THAT mom. Lol
I would add that, just when you think you’ve got a routine down for your kids at a certain age, things change and you have to create another “normal”. For example, play doh isn’t on our radar anymore and my kids couldn’t care less about the cereals they cannot eat. But they go to a lot of social events on their own and I have to constantly figure out how I’m going to feed them when they are out of the house for five or more hours at a time and everyone else is being provided pizza at someone’s house or a full meal at a bar mitzvah or birthday party. They have gotten good at eating ahead of time and packing a lot of snacks in their purses, but they often still come home starving. And for the record, McDonald’s french fries are one of the only fast foods I do feel safe feeding my very sensitive kids who have had normal antibody numbers for almost 11 years now, and being able to stop there at 11:00 pm after a late party has been a lifesaver at times. It’s a personal choice, as with everything connected to child-rearing.
My daughter has wheat, dairy, peanut, and egg allergies. Different than being diagnosed with celiacs but so many of your truths spoke to me. No one, unless they life with a food allergy understands living with a food allergy. But I’m so thankful for the people in my life that try. It is a way of life and we also try to look at the bright side that we eat healthier foods because we can’t just swing by the fast food joint. But, oh how I’d love that convenience some days.
Darn that play doh!! And watching the double dippers!