This 12-year-old Celiac Can Teach Us ALL a Lesson

girl with celiac disease

When I think back to being 12 years old, I totally cringe. It was not the best time to be me. To misquote Frank Sinatra…”When I was 12 years old, it wasn’t a very good year.”

I had zero self-esteem. Zero confidence. Everybody would always say to my older brothers, “Why is he is so quiet?”

The fact is…I had tons to say. And I wanted the world to hear my voice. But every time I would go to open my mouth, I would analyze the heck out of what I was going to say first, wondering if people would a) even listen to me or b) laugh at me. By the time I got enough confidence to say it, either somebody already did or the conversation moved on. Man…I hated myself.

When I hit my teens, I finally began to believe in myself a bit and my mid-20’s is when my life finally started to kick in. But boy, it took me a long time to get there. And naturally, as I always say, I am still a work in progress. Aren’t we all?

Anyway, this is a long lead-in to introducing a fellow celiac who happens to be 12 years old and is worlds ahead of where I was at that age. Being an adult celiac can be a bear at times. This kid is 12 and she has already mastered the attitude a celiac must have to thrive in this crazy world we live in. It all started with an email I received last week. It reads as follows:

I am a 12 year old celiac. I got celiac when I was 5 or 6. I would go to the nurse with horrible stomach pains nearly everyday. Eventually I started throwing up. My mom has celiac so I was taken off gluten. It’s hard. It’s hard to explain celiac to kids and why I can’t have just one slice of cake or just one slice of pizza.

My mom is a single parent with a child and celiac so you know how hard that is. My friends sorta get it but not really. For parties, I bring my own stuff and I’m always different. It gets easier not to be sad when I’m offered food that I can’t have. I get angry when people don’t understand I can’t have it. No one is perfect. I just remember that.

Another celiac

Seriously…one of the best emails I’ve ever received. And then she continued to astound me by leaving the following comments on a various blog posts of mine.

On my post about McDonalds: “I definately agree that McDonalds is not safe. I got celiac when I was 5. I’m 12 now but I would always get a sundae and fries but guess what? It has wheat and if it doesn’t it has dairy. Sometimes you just have to adjust. I haven’t eaten a thing at mcdonalds since I was 5.”

‘Sometimes you just have to adjust’. Just love that. Consider THAT the next time you’re whining that you can’t have [whatever].

On my post about family members in denial: “It’s just food. I have lived without wheat and dairy since I was 5. Now I’m 12. It’s just food.”

That is our mantra. It’s just food. How is it that a 12 year old can get that, but so many adult celiacs cannot?

And finally, on my post about various celiac rants: “Would you tell a person with cancer, I couldn’t do the radation thereapy just kill me now! I’m in middle school. That means pizza parties, ice cream, cake, cupcakes, cookies etc. Had celiac since I was 5. I’ve been told that no one can live without pizza. Guess what?! I CAN AND I HAVE FOR 7 YEARS. I’ve never said that. I just say its hard. Celiac gets easier after a while.”

She totally gets it. Do you?

Dang…I love this kid.

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24 thoughts on “This 12-year-old Celiac Can Teach Us ALL a Lesson”

  1. She is an exceptional young lady! Congratulations to her Mom as well for raising such a wonderful daughter!

    “You have brains in your head. You have feet in your shoes. You can steer yourself any direction you choose. You’re on your own. And you know what you know. And YOU are the one who’ll decide where to go…

    You’re off to Great Places!
    Today is your day!
    Your mountain is waiting,
    So… get on your way…

    So be sure when you step, Step with care and great tact. And remember that life’s A Great Balancing Act. And will you succeed? Yes! You will, indeed! (98 and ΒΎ percent guaranteed) Kid, you’ll move mountains.

    –Dr. Seuss, Oh, The Places You’ll Go!

  2. I happen to be subscribed to some of those posts and saw a couple of those comments too, GD. I was floored by the plain-spoken insights of this young lady who comes off wise far beyond her years and even vaguely hoped to myself you would somehow highlight what she had to say. I don’t know if this is still a thing in schools nowadays but in my day (1980s) there were teachers who organised some of the better students into a peer counselling group for their fellow students. She sounds like she could definitely be a peer counsellor at her school.

  3. I have a question for her. Was she tested for Celiac? Only thing I saw was her mom took her off gluten because the mom has celiac. Just wondering. If not, shouldn’t she pursue it? For the sake of her future health?

    I do love her attitude, as well as my Italian Exchange Student from Italy who was diagnosed at 2. I think children can adapt better than an adult who’s been free to eat what they want for 20, 30, 40 years before a diagnosis. For a newbie, it’s hard. But I passed my 1 year anniversary and I have less anger than I did at the start.

    My point being, I think we should be allowed to grieve and miss food without being made to feel guilty for it. I think eventually, we all get there. Not saying that’s what’s happening, just throwing in my thoughts as a newbie. πŸ™‚

    1. Hi there. She said she was diagnosed with celiac at age 5 or 6.

      And yes…we were all newbies at one point. There is certainly a mourning stage you have to go thru and process. You’ll get there.

  4. She gives me hope and a direction for explaining to my daughter why she can’t have certain foods. My little celiac is 6 and was diagnosed at 2. I worry about teenage years and being different. But hey – its just food. Sometimes you have to adjust and it gets easier after a while, right? Thank so much Another Celiac and Gluten Dude.

  5. That girl has the right attitude….. I think we all love her! It’s so nice to read someone that young with the right attitude. πŸ™‚

  6. This will be my daughter, My girl turns 5 tomorrow and since she could eat she hasn’t been allowed gluten wheat dairy nuts eggs or tomatoes. She is an amazing little girl and is so strong I’m proud that she is mine πŸ™‚

  7. Both of my children have Celiac (as do I). They were diagnosed at ages 2 years old and the other at 6 months old. Their ages now are 10 and 12. They are so wonderful and matter of fact about eating gluten free. They self-advocate at school and don’t get upset about cupcake and pizza parties. They also say “it’s just food and my disease could be SO much worse”. They understand that they are blessed to have been diagnosed early and that their health can be 100% controlled by diet. I’m so very proud of them!

  8. Like she said, “it’s just food”. She also said “it’s hard.” And she’s right. On both accounts. I have Celiac and recently got told I also had to go on a GAPS and FODMAP diet. I can’t have dairy or eggs. And I cannot eat tuna or nuts. I live with a man who has had a heart attack and triple by pass, and he still smokes and eats McDonald’s (etc) and drinks 6 Coca Cola’s a day. He could really learn something from this 12 year old. But he won’t. Because food can be like an addiction. A “way of life” is, basically, an addiction. We all gain some sort of comfort from our degree of life full of “sameness”. This 12 year old remembers eating no other foods or living any other way of life. I would never expect for it to be as easy for, say, a 40 year old to change their way of living as it would be for a 5 year old. Being gluten free is a way of living. Kids can be bullied and made fun of because they are different. It makes me sad to say but so can adults. And yeah, we should be able to put on our big boy (or girl) panties and shrug it off because we are adults. But the uproar over the words of Jimmy Kimmel or Jennifer Lawrence shows we aren’t always able to do that. Adults with Celiac also must accept that they don’t truly fit in with the majority of the world. “It’s just food” really is a great mantra. But our other mantra needs to be “It’s okay to be different”. I hope you keep your great attitude, 12 year old. You will go far if you do. I admire your tenacity. Hang on to it. And don’t read the latest rant. It’s “R” rated!

  9. Love it! My gluten free 3 year old has more will power and understanding about avoiding gluten than most adults I know!! She’s kind of a rock star!! I think she understands how much better she feels and that out weighs getting to eat whatever she wants!!

  10. I train service dogs for people with food allergies, diabetes, seizures ext… I have to say kids who suffer with disease amaze me. They seem to be more advanced on the simplicity of things. I grow as a person with each and every one of them.

  11. I’ve had celiac disease my whole life, and when you haven’t even it you don’t crave it… Besides it’s not worth bloating , abdominal pains, puking and diahrea (yes, diahrea.) I mean getting all this for a day up to three days isn’t worth it for a slice of pizza. Screw pizza I’d rather look like a weirdo for saying I can’t eat pizza on a date than puke all over my date later.

    Seriously, it’s not worth it. The last food I ate that was wheat was like a little bag of the red doritos and I was sick for two days. Seriously, I remember the taste of puke more then the doritos. Food is just food simply. People are vegetarian and vegan and go on diets to loose weight so why is it so hard for people to realise that if you keep eating wheat you’ll eventually die because your intestines will just be destroyed. Like really. A pizza over your life?

    Also yes, you can die from celiac disease if continueously eat wheat. Before they knew what it was and how to treat it they called it the Wasting disease because you ‘wasted’ food on them and they eventually just died extremely young. So remember, that could be you if you pig out on pizzas and wheat continueously? If it’s really worth death or sickness to you then go ahead and suffer. But i’d rather just continue a gluten free diet and live without puking everywhere and having diahrea constantly.

  12. I have been gluten-free since I was 7 and I am now 18. I can relate to everything this girl said. It was hard growing up with Celiac disease, but that’s just something that makes me more special. I think as a little girl my mom trained my young mind so well not to eat gluten that I never even think about cheating, verses a couple of my friends who have been diagnosed as teenagers who cheat all the time because it’s harder for them to resist. Now it has become such a fad and popular diet. Because I have been GF for so long, I always say, “I was gluten-free before it was cool!” It’s such a blessing to have a great variety of good gluten-free now. There has definitely been a huge evolution of gluten-free foods over the last decade. But going back to what this girl said, it’s just food. I have lived without gluten for 11 years. It’s annoying. It sucks. But at the same time, it’s only a minor trial compared to other challenges and I’m grateful that it’s the only major problem with my body. Besides, being unique is fun! πŸ™‚

  13. There is a fabulous book out there called “The Gluten Glitch” (do a Google search) that helps kids explain to other kids, why they can’t have gluten. I work in an elementary school, and one of our kids had to go g.f. this summer, after being diagnosed with Celiac. I gave her a rubber bracelet I got from the author that says “Gluten Free” on one side, and “I Eat” on the other, and her mom went and bought the book and then that girl brought it in and we read it to the class so that they could understand why she (and I) cannot eat gluten. It was great for them. It was great for her to have me there to advocate for her, and still is, for class parties and times when she feels left out, because I’m right there with her. We fist bump and move on with our g.f. fruit or whatever. It is hard, and there are just as many challenges for kids as there are for adults. It’s not easier for them, because they haven’t had “40 years to eat gluten”. Those kinds of comments make me sad, because the social aspect of having Celiac as a child are a lot more difficult, in my opinion. Kids are cruel, and being different as a child is harder than being different as an adult, where it’s almost the norm to have a food thing, or be on some kind of diet or whatever. Let’s show this girl some love, and not make hurtful comments. It’s hard for everyone. It gets easier eventually, but some days are still hard. We all know that. We need to be supportive, and stick together.

    So to the original 12 yr old poster, after having a list of other food allergies, on top of Celiac disease, had to give up dairy this summer as well. It has been very hard, but you know, you are right. It is just food, and I am adjusting. I need to keep reminding myself that my health is more important than missing out on food that I used to be able to eat. In the end, there are still so many other good things out there, I just have to take the time to make them. Kudos to you!

    1. Just wanted to say you are a great teacher and the kids are lucky to have you! And any comment I made about the kids not having had gluten as a way of life wasn’t meant to mean they have it easier. It isn’t. A different set of challenges than adults having to make “way of life” changes, but certainly not easier.

  14. I was diagnosed with Celiac 8 years ago. The thing that bothers me the most is when someone asks if I had the biopsy or just decided to go off gluten. No one should need to prove their intolerance. If you are sick, go off gluten and get better there’s your diagnosis! I was at a support group and a woman said her doctor told her she would have to go back on gluten for 8 weeks to get a diagnosis. That is crazy!! No one should have to suffer for a diagnosis. If you feel better without gluten no one should question why you won’t go near it. That’s my 2 cents worth.

  15. Kids are pretty adaptable, that’s why. My mother died when I was 9- I knew she was dying, it was cancer. I never questioned it. I didn’t ask why. I didn’t rail at the world believing it was unfair.
    It just was. It’s possibly one of the best and the worst things about kids. Abuse em when they’re little? It just is. They won’t like it- but it’s their life, and they quite often don’t realise it can be different.
    Of course this is all generalisation.
    When I was an adult, I lost my sister, my dad, my first stepmother and my brother.
    Hoo, boy was I pissed. Especially my first adult loss, my stepmother. I danced up and down Kubler-Ross’s stages of grief like a mofo.
    I am still grieving for my blood family. One’s recent, so let’s not count that.
    Adults just get so set in what they expect from life. I guess that’s why we don’t get it.
    I’m waiting on test results- and I’m actually pretty chilled but daunted, if that makes sense? I agree with the kid- it’s just food- but the symptoms I’ve had make everything too f*n hard. I will do it though, if it is. Because then, hopefully, I’ll get to be free for the first time in a very,,very long time

  16. WOW!!!!! I was a mess at 12 and this little lady is AMAZING! You have great things ahead of you little girl! When you feel down just remember you have a fellow Celiac behind you πŸ‘πŸ»πŸ‘πŸ» and cheering for you.

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Who I am. And who I'm not.

Who I am. And who I'm not.

I AM someone who's been gluten-free since 2007 due to a diagnosis of severe celiac disease. I'm someone who can steer you in the right direction when it comes to going gluten-free. And I'm someone who will always give you the naked truth about going gluten free.

I AM NOT someone who embraces this gluten-free craziness. I didn’t find freedom, a better life or any of that other crap when I got diagnosed. With all due respect to Hunter S. Thompson, I found fear and loathing of an unknown world. But if I can share my wisdom, tell my stories and make the transition easier on you, I’ve done my job.

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