How a Gluten-Free Diet Affects Children

posted in: Blog Post | 4

I don’t have a child that needs to eat gluten-free. I know that there are many children out there that need to eat gluten-free. By need I mean 100% gluten-free for medical reasons. In all my years of being diagnosed, it’s amazing to think I have never seen nor met one of these children. I know they exist. Ignoring the fact that they do is naive and pretty stupid. Individuals can be diagnosed with celiac disease at incredibly young ages, and with a parent being a carrier of the disease the potential for an offspring (up to 22% for the immediate relative SOURCE) having celiac is right there in your face.

I’ve never met a child that needed to eat gluten-free until the day my three year old nephew needed to be like me. Not diagnosed with celiac disease, but needing to eat 100% gluten-free. Not until he avoided gluten did he start to gain weight, become less nauseous and finally have a solid bowel movement (or poop, if you prefer). His mom, my sister, already has to avoid gluten due to an intolerance, so the apple doesn’t fall from the tree.

Seeing my nephew struggle with a gluten-free diet doesn’t mirror my own life, he is young enough to not know what the taste of a Subway sandwich is like. But seeing him live a better and healthier life is all worth it. Only recently did the idea of what a gluten-free diet and lifestyle means to a three year old child really hit home.

Allow me to set up the scene:

Our whole family had gathered at my sister’s house for a birthday party for an adult and since four of us (my Mom, sister, nephew and I) have to eat gluten-free, my sister made a GF cake for everyone to partake in. There was no ‘other’ cake in any attempt to include the other dozen people there. Only one gluten-free cake was made and the person who’s birthday it was has no need to eat gluten-free. But what I saw was my nephew shying away from the cake.

I witnessed a three year old boy not want cake; and the reason is more heartbreaking than I could ever imagine. My nephew thought it would make him sick, he thought that the cake was made with wheat flour and NOT gluten-free and would render him as sick as the days before he was on the medically needed GF diet. Me, as a diagnosed celiac would just say ‘No thank you’ and go on with my life, but a little boy did have fear and uncertainty in his eyes OVER FOOD.

The whine in his voice and the cowering from the fork of cake is something I’ll never forget. No child should feel like this. This is why early diagnosis of anything is important. And if celiac or other gluten issues is suspected you need to get it checked. Especially in children who might not be meeting milestones or having difficulties with body functions.

My sister said to him “Look, Uncle Jordan is eating the cake” when in fact I was, because my nephew knows that I am like him and he is like me. We both need to eat gluten-free, so in his eyes, I’m the food tipping point.

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Me and my nephew enjoying a nice gluten-free snack together.

 

It’s important to remember that minds this young are impressionable.

A boy of three knows what gluten-does to his body and will in fact avoid it.

It’s the people in any room where these young minds are, who say things along the lines of ‘this needs more gluten’ or ‘where is the gluten in this cake?’ are the ones who facilitate this fear of food for young children. A three year old doesn’t understand that you’re joking and is still years away from even pronouncing the word ‘sarcasm‘. All these comments do is hurt the already vulnerable and piss off the people around that are attempting to teach the child that there is no need to fear food.

While children might not understand the idea of a joke, even saying things like this to adults who are diagnosed with celiac disease can become an endless pain in the ass. Joking about a food needing gluten can be insulting to many. There is no time when it rolls of a celiac’s back, it’s just another reminder that a person making the joke can’t understand the pain/anguish/turmoil/aggravation/pick a negative feeling we go through. Jokes do hurt. Especially when it’s your health.

My nephew is smart, and he’ll figure out eventually that his mother and father would never hurt him when it comes to food, but when there is such a commotion surrounding him at events where gluten-full people make jokes about it; learning can be harder.

He is why I want to advocate. He is why I want more people to know about celiac disease and the medically needed gluten-free diet.

4 Responses

  1. This is beautiful.
    I cried.
    I hate that my teenager & husband feel like a pain in the ass everywhere we go (Excuse my profanity)
    You will be the best support to your nephew his whole life.
    I am so thankful my daughter’s friends are so supportive of her lifestyle. I hope your nephew has friends that cool one day.
    Maybe if we as advocates are loud enough, the world will continue to help.
    On your next Orlando adventure or if get your nephew to the incredible Disney world of gluten free, maybe we can all have a gfree donut together.
    All the best
    Lisa

  2. Thanks so much for writing this. My daughter was officially diagnosed at age 4, but we started the process at age three. That was after being told year after year not to worry about her big stomach. I feel like I could have avoided her more pain and discomfort if the doctors would have listened better.
    Thank you for being an advocate. My daughter also thrives of having family members that “eat like her.” Her Pappy showed many signs of gluten intolerance and so did I(possible celiac but theres a long story behind me not having a diagnosis)
    You are awesome, keep doing what you do for the celiac community!

  3. My son (6) and I have celiac. He hasn’t been officially diagnosed (I kick myself for that) I switched his diet as soon as I saw the symptoms. He went from the 2nd percentile to the 75th percentile in height in a year when I switched to gluten free. He has a huge fear of going to restaurants because of naive waiters and chefs insisting foods were GF when they weren’t. I, too see the fear in his eyes when we mention going out to eat about once a month. I look at it in a positive-saving money and eating healthier!

  4. This is lovely and sad at the same time. My 8 year old has Celiac and the battle to keep him healthy is constant. Mostly because people just don’t understand how very little it takes to make him sick. I get people outside of family not getting it…but when family doesn’t get it and they’re the ones badgering an 8 year old over why they won’t eat something….strains a relationship. Keep being an awesome uncle and showing the young one that he doesn’t need to be afraid, just observant and self advocating.

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