Tips for Parenting a Child with Celiac Disease from Taylor Miller {15-Year-Old Advocate and Blogger at Gluten Away}

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Since I began this journey in August, I have connected with some wonderful people in the celiac community. One of those people is Taylor Miller. I love his blog, Gluten Away. It makes me very happy to see a young man advocating for himself and educating others about celiac disease. In this post, I asked Taylor to guide parents on supporting their children with celiac disease. It seems he must have received great support from his mom (pictured with him here). Here are the tips he shared with me:

First off I wanted to thank Jackie for having me guest post on her blog about such a great topic! I think I can really help a lot of parents out there by giving some tips for how to help your kid manage a gluten-free diet. Oh yea, and these tips will be from a kid himself! (Well, kind of. I’m 15 but I’ll let this one slide)

Over the past 3 years I’ve had to deal with many health problems including getting diagnosed with Celiac Disease in addition to a rare type of Adrenal Disorder. I’m probably a lot more mature than most teenagers because of these issues. However, I’m no expert on parenting, just a kid giving you tips from what I’ve learned being on a gluten-free diet.

Explain what the gluten-free diet means in the simplest way possible.

If your kid is new to a gluten-free diet or is just starting out, the last thing you want to do is confuse them about what they can and can’t eat. If they are younger, try explaining the simple foods they can’t have and how it will make them very sick if they eat it. If they are older in their teens, be very serious about what they have and what they can’t eat. Let them know it’s not something to mess around with and if they don’t want to feel sick all the time, a gluten-free diet is the only way to feel better.

Now, the last thing you want to do is explain it in a way where it sounds like it’s the end of the world. If you’re listing tons of things they can never eat again, they’re going to be devastated. Follow it up by talking about all the things they can still eat that you know they love! It will probably make it sound a little bit better to them, but don’t expect a miracle.

Try to have food available in social situations to make him /her feel normal!

Being gluten-free, my mom always tried her best to make my life normal while eating away from home. Nothing made me feel happier than being able to eat my own special gluten-free treat in a situation where I normally wouldn’t be able. Some of the situations I imagine would be hardest are school parties and just going to a friend’s house.

If there is a school party filled with foods and sweets your kid knows is off limits, they’re going to be pretty sad. There really is nothing worse than being surrounded by food you know you can’t have. Buy or make a specialty sweet to surprise them with! I promise they will remember and know you cared enough to go out of your way to do it. To prepare, just ask them every once in a while if they have anything coming up where there will be food involved. This mostly happens in school.

Remind them how they would feel if they ate the food they are tempted by!

A lot of the problems many kids come across is resisting the urge to eat gluten-filled foods when they know they shouldn’t. It’s not the easiest thing to have to deal with every day when you’re only a kid, but it’s something we all face. If you take the time to realize when they are struggling with temptation, it can make a huge difference. Being reminded about how I would feel if I ate the food I so badly wanted was the only thing that kept me from eating it.

Try to help find, make or help them learn to make gluten-free versions of the foods they crave most.

The last thing you want to do is make it look like you’re the one putting on all the restrictions, so if the food they crave has a gluten-free version, getting it for them will definitely make you look like a superhero.  You also won’t have to worry about them eating gluten which is a plus! They will come across so many temptations. Letting them know the consequences and trying to find them gluten-free substitutes will make you the best parent out there. This flourless chocolate cake is one of my favorites. You can see the recipe here.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Take purposeful “glutening” as an opportunity to learn and teach your kid about why sticking to the gluten-free diet is important.

I’m going to be completely honest and say at least once or twice your kid is going to break and give in to some type of gluten-filled food. When this happens you can do one of two things: you can be mad and yell at them for what they did, or you can be sympathetic and use it as a learning experience.

During this time, really sit back and think about how your kid feels. They are probably now feeling very sick. They likely know what they did was wrong, and the last thing they want to deal with is being punished for something that’s punishing them already. So, what do you do? Use the situation to your advantage. Make your kid realize how eating the gluten-filled food made them feel and remind them why they are on the gluten-free diet in the first place. Let them know you’re there to make them feel better. As stubborn and upset as they will probably seem to be, they will definitely appreciate that you cared enough to help them feel better and didn’t try to make them feel worse.

Always let your kid know that you are their biggest supporter and not their enemy.

There will probably be many times along the way where your kid will struggle. I know being gluten-free as an adult must be hard, but let me tell you, being gluten-free as a kid is MUCH harder. There will be times they’ll feel like they just want to be normal. It’s times like this where you need to make the most of the opportunity and take action.

Most kids’ lives are already full of drama so please, I beg of you, don’t add any more! Remind them that you know how hard it is and let them know you are doing your best to make it easy on them. Make them well aware that you only care and are not the enemy.

A lot of  times kids may be pretty stubborn when dealing with this, so pick your moments and find your own little ways to let them know you are there for them. A big sympathetic talk isn’t always needed, but a small simple gesture can mean a lot more than it seems. It always meant more to me.

Express how finding friends that treat their diet seriously is important!

This part of the tips I have to offer may be most important. Explaining early and often how a true friend should act is critical. Let them know a good friend doesn’t tease them about their different diet, but is someone that supports and shows them that they care. My friends are some of the most important people in my life, and without some of the things my mom taught me, I would have never known who they truly are today.

I’ve dealt with other kids my age that would mess with me about how I ate for no reason at all. I simply don’t put up with it. A lot of the times it may seem fine and harmless and shouldn’t be something you have to worry about. But, if you start to notice your kid mention something once or twice a week about being teased for their diet, then there may be a problem. Make sure to be aware of it and help them manage it.

Thank you for having me guest blog Jackie! I hope some of these tips can be helpful to you parents and I hope it gave you a different way to look at how to handle situations with your kid from the view of a 15 year old.

 

Taylor is a 15-year-old with Celiac Disease and a rare type of Adrenal Disorder. His goal is to help educate parents, teens, and kids all about the gluten-free lifestyle to help make our lives a little easier. He tries to help, inspire, and show that living gluten-free doesn’t have to be a hard thing! You can read his story here on his website, Gluten Away. He is also on facebook and twitter. I follow him and love to read his posts and all of the great information he shares. He is a wonderful advocate and a fantastic resource in the celiac community.

4 Comments

  • We’re big fans of Taylor and the work he does at GlutenAway! He and his mom are some of the coolest peeps you’ll ever meet 😉

  • My 15 y/0 has just been diagnosed with celiac disease we are in the early stages and are scheduled to meet with his GI Doctor this week. He is very mad and upset mostly toward me and I am at a loss as what to do I have tried talking to him but he shuts me out.. I know he needs time to understand and process all this I just wish I could help him more!!!

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