Gluten Allergy in Kids: Don’t Freak – It’s Going To Be OK

gluten-free superhero kid with red cape

Becoming a parent is one of the most rewarding experiences in our lives. But let's be real for a moment, it's hard as h-e-double-hockey-sticks too. So how do you identify a gluten allergy in kids? What do you feed them? How do you keep them safe from gluten (without putting them in a bubble)? Read on as I walk you through the ages and stages of caring for your precious gluten-free schmoopie.

The first question is does anyone in your family have celiac disease? Celiac disease is a hereditary condition, which means it is passed through families. If you, a first degree or second degree relative has celiac disease, the first step is to find a pediatric gastroenterologist knowledgeable in celiac disease and gluten intolerance. Request to have your child be tested to see if they carry the celiac gene (no matter what their age and even if they are not showing symptoms). The celiac genetic test is simple and inexpensive blood-work. 

my-loves-image

When our daughter tested positive for the celiac gene, my husband and I took the next step and had the celiac blood panel run. This would tell us if the gene was active.

Gluten intolerance and non-celiac gluten sensitivity are trickier to diagnose as there is not a test to easily provide results. Your child may be exhibiting signs that mimic celiac disease, but their blood work comes back negative. This is where the elimination diet comes in to play.

Baby

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Welcome to the world of parenting! You're sleep deprived, trying to identify a "hungry" cry from a "tired" cry, and have been spit up and peed on regularly. And now you find out that your baby needs to be gluten-free. 

If your baby has been diagnosed with celiac disease or gluten intolerance, there IS a positive aspect to this. Yes, I know, I sound all motivational speaker-ish, but I'm being 100% sincere. The positive part? The medical need for your child to be gluten-free has been caught early. Sadly, many children and adults suffer through years of misdiagnosis before the correct one is made. Your infant's precious tummy (along with the rest of their body) will be spared the effects of celiac disease. 

It's important to note that even if your infant has tested positive for the celiac gene, it's possible that the disease will not "activate" until gluten is introduced into their system (typically around six to nine months of age). Celiac disease has over 250 symptoms associated with it. However, the disease can also be "silent" with no visible symptoms (that was our daughter's situation).

  1. It's essential that once your child has been diagnosed with carrying the celiac gene, they MUST get tested (celiac blood panel) each year to make sure their range is "normal".
  2. How do you find items such as gluten-free baby formula, gluten-free teething biscuits, gluten-free baby shampoo, lotions, and more? Now is the time to ask for help (even if you're the kind of person who never wants to impose).
  3. Ask anyone and everyone you can -- from your pediatrician and friends to your mom support groups (local and online) and food / gluten allergy chapter. I was amazed at how many times I heard, "My friend's cousin XYZ is gluten-free!" when I spoke about my daughter and I. It's a great way to make connections -- the gluten-free community is extremely supportive. 

Toddler

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Toddlers seem to put EVERYTHING in their mouths -- from their feet (totally fine and adorable) to random objects found during story time at the library (totally gross and cause to shout "icky icky icky" repeatedly like a wacko). When your toddler is going through their toddler years, it's hard enough keeping them from taste testing the above mentioned. Now let's also throw the need to monitor every.single.thing that goes into your kid's mouth for gluten.

Let's be honest, telling Tommy that he can't eat the cookies put out during his play date with Billy isn't going to work. In Tommy the Toddler's head, he WANTS A COOKIE NOW! Rationalizing with him is only going to cause the two of you to end up in tears on the floor.

So how do you handle this precarious age? This is when you really need to be proactive (you'll hear that word a lot in this post).

  1. Alert friends, parents, the sales lady trying to pass out gluten crackers at the grocery store, that your child cannot have gluten. DON'T downplay it (yes, I'm yelling). Never, ever feel apologetic that your child is gluten-free. This is a health issue, not an aversion to Brussels sprouts (blech).
  2. Let above mentioned friends, parents, the sales lady trying to pass out gluten crackers at the grocery store know they can't randomly feed your child. Kiddie get-togethers will be BYOS - bring your own snack. 
  3. Plan ahead -- always have gluten-free treats, snacks, and meals on hand. Search for toddler gluten-free recipes -- you'll find a treasure trove of recipes and inspiration.
  4. Have your child pick out their favorite gluten-free snack to bring on their play date. This helps them feel empowered in their food decisions.
  5. Host the get together at your house and then you'll be able to control what food is available. Keep all of the snacks gluten-free - they won't know any difference.
  6. It's ok not to eat someone's homemade gluten-free food. In the early stages of my diagnosis as well as my daughter's diagnosis, we had friends and family who were so thoughtful to cook or bake gluten-free dishes. Unfortunately, because it's homemade, you don't know for certain if it's truly gluten-free. Was there cross contamination? Did they use regular oatmeal instead of gluten-free certified oats? Was there an ingredient added that they thought was gluten-free, but isn't? In the beginning, it was so hard for me to explain that as much as I appreciated their efforts, I had to be extremely careful as one small mistake could cause us to be ill. No one should be offended about this (if anything, they should be happy they don't have to stress about feeding you). And if they give you a hard time, they just don't get it and can go eat worms.
  7. Now is the time to start teaching your toddler to say the phrase "I'm gluten-free." when offered food. This will help them in the coming years of preschool, school age, and on. Teach them that their little voices should be heard loud and clear!

Preschool

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How did it happen that your baby is now heading off to preschool? Whether it's for a few hours each day or full day preschool, it's totally normal to feel stressed about leaving your gluten-free child in the care of others. Parents with kids who aren't gluten-free are freaking out right now. Moms, Dads and caregivers everywhere are trying to scheme a way to spy on their child. 

The top three items found in preschools and grade schools that contain gluten are Play-Doh, paper mache, and sensory table fillers.

Play-Doh

As of this article's publish date, the Play-Doh brand contains wheat.

According to their website: "The exact ingredients of Play-Doh compound are proprietary, so we cannot share them with you. We can tell you that it is primarily a mixture of water, salt and flour. It does NOT contain peanuts, peanut oil, or any milk byproducts. It DOES contain wheat. Play-Doh compound is not a food item and is not intended to be eaten. Play-Doh compound is non-toxic, non-irritating & non-allergenic except as noted: Children who are allergic to wheat gluten may have an allergic reaction to this product."

Paper Mache

Traditional paper mache used in Art Class is made with glue, water, and all-purpose white flour (aka gluten). I realized this when my daughter was creating a paper mache mask in school. You can make your own gluten-free paper mache for projects by subsituting gluten-free flour.

Sensory Table Fillers

Early childhood teachers use these tables as a way for your preschooler to play and explore with their senses. What do the sand and seashells look like? How do they feel? How do they smell? However, many sensory tables and bins use items such as dried pasta, oatmeal, flour, and dry cereal

  1. Again, being proactive is paramount. Even before your child starts their first day of school, meet with the preschool director, teacher and teacher's assistant to discuss an action plan on keeping the classroom from being a "gluten hazard". 
  2. If the preschool has snack time and/or lunch, it's important to label your child's gluten-free preschool snacks and lunches with their name and "gluten-free". 
  3. Another area to watch out for is "classroom snack sign-up", sometimes a parent or caregiver signs up to bring snack in for a week. 
  4. Keep reinforcing with your preschooler that they are gluten-free and can't eat certain foods. Help them understand the importance of not sharing or eating their friend's food because it can make them sick.
  5. There are some awesome gluten-free children's books you can read together to help them understand while relating to a story character. 

Parenting is a lot like the bar scene: Everyone's yelling, everything's sticky, and occasionally someone pukes somewhere they shouldn't.

via Scary Mommy

Childhood

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As you send your child off to a full day of school, being prepared and proactive will help ease stress and tension. I cried many nights worrying that our daughter would feel left out and excluded. This is a time you'll need to be there emotionally for your child -- talk to them regularly about how they're feeling and dealing with seeing their classmates eat gluten-filled food at snack and lunchtime. Let them vent and then reinforce their empowerment. 

  1. As soon as you have the list of teachers your child will have, reach out via e-mail and introduce yourself. Let them know that your child must be gluten-free. This creates an open line of communication that will be helpful throughout the school year.
  2. Once the room parent(s) are selected (or if you're up to the challenge, go for it yourself!), contact the room parents and use a similar e-mail introduction.
  3. Contact the school nurse -- many nurse's offices have a small refrigerator. I kept some snacks stored in there for when an unexpected celebration popped up. 
  4. Help your child have an answer prepared for when a friend or classmate asks, "Why can't you eat that?" This really helps as kids can feel put on the spot and awkward talking about being gluten-free.
  5. Bake together. It's fun baking cookies and brownies for lunch time treats. This also continues to empower your child to choose what they'd enjoy most (gluten-free vanilla cupcakes or chocolate brownie bites?). 

Adolescence -Tween / Teenager

kids-teenagers-eating-gluten-free-pizza-food

Let's begin with two very scary things...raging hormones and puberty.

Your gluten-free tween / teenager wants privacy and freedom. They want to hang at their friend's house, go to the mall, or wander the neighborhood. They most certainly don't want you following them around with gluten-free food packaged in a bag with hand-drawn smiley faces. I know this because I've tried it (but I blame my poor artwork skills, not creeper Mom skills).  So how do you make sure your wanna-be independent tween / teen is following the rules?

  1. Continue to empower your gluten-free teenager. Peer pressure can lead to "cheating”, so it's important to work with them on knowing that even just a tiny bite of regular pizza isn't ok. It's essentially like eating a tiny bite of poison.
  2. Make sure they have gluten-free protein bars or snack bars in their backpacks at all times.
  3. Check with the school's cafeteria supervisor to see if they offer a gluten-free lunch menu. Confirm how the food is prepared.
  4. Have them keep at least $5 in their book bag or wallet for if they need a grab and go snack.
  5. Remind them that you're not doing all of this to be annoying. You're doing these things because you love them and want them to be healthy. 
  6. Keep connecting with those resources that include parents, teachers, and online groups.
  7. These young whippersnappers are so tech savvy! There are several gluten-free apps they can download to their smartphone to help find gluten-free restaurants and grocery stores. 

Being a parent is like folding a fitted sheet... 

No one really knows how.

Source unknown (but probably an exhausted parent)

College Student

men-and-women-college-students-in-graduation-caps-and-gowns

As a parent or caregiver, letting go can be hard. You've protected your gluten-free child and now they're heading off into a world where students live on Ramen noodles and cold pizza. Is it wrong that I'm more worried about what my daughter will eat while she's in college than how she'll do academically? 

Many colleges across the United States offer designated gluten-free kitchens and food stations. I was amazed that some schools have a registered dietitian on site to address everything from celiac disease and gluten intolerance to peanut allergies and lactose intolerance. Schools also offer Kosher, vegan, and vegetarian options. 

  1. Whether your high schooler has a specific school or two they are set on attending or is planning on touring several schools, reach out as early as possible regarding the meal plan.
  2. Check out the Meal Plan or Dining options on the school website to see what will work best for your child. 
  3. Of course, gluten-free care packages are a perfect way to send your college student's favorite snacks and treats. 
  4. Another option as mentioned above in Tween / Teens is using gluten-free apps.

It's going to be OK

I know this is overwhelming, but you are strong and will be able to guide your child through through this gluten-free journey. Find your peeps through not only family and friends, but support groups and the virtual internet community. You'll hear their stories, be able to share and ask for suggestions, and find the validation that you can do this LIKE A BOSS

And (yay!) you've found me -- feel free to comment or message me directly. I'm here for you.

Food Inspiration

If you're looking for some gluten-free food inspiration, check these out below! Want to be in the know of all the latest gluten-free news and tips? Be sure to sign up for my monthly Hold the Gluten newsletter here!

Do you have a question about your child's celiac disease, gluten intolerance, or non-celiac gluten sensitivity? Or want to share a tip on how you've navigated your kid's gluten-free diet? Share with the Hold the Gluten community in the comments below!

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Maureen

Maureen

Maureen Stanley was diagnosed with Celiac Disease in 2005. Way back before gluten-free was “mainstream“. Maureen created Hold The Gluten blog and podcast in 2008 as a way to connect members of the gluten-free community across the world.

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