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Gluten-Free for 12 Years: A 14-year-old Boy's Perspective


Tyler is on the cover of Danna's book

This article originally appeared in the Winter 2004 edition of Celiac.com's Journal of Gluten-Sensitivity.

Celiac.com 10/04/2010 - When Tyler was diagnosed with celiac disease at the age of 18 months, I wanted desperately to talk to a kid––one who could talk––about what it’s like to have celiac disease.  Do you feel jipped?  Does it make you sad?  Do you feel “different” from the other kids?!?  I was heartbroken––grief-stricken––I had a long way to go before I would evolve into the cheerleader I hope I’ve become in helping people live––and love––the gluten-free lifestyle.

Oh, sure, friends and family told me “it would be okay,” the way friends and family do in tough situations.  But I felt they were just placating me––after all, what did they know?  They hadn’t even heard of celiac disease before I had explained the diagnosis.  And to be honest, I didn’t care much at that time about what adults thought of the situation––I wanted desperately to hear from a kid: “Look at me––I turned out just fine!”

That was nearly 13 years ago, and there weren’t any kids who had celiac disease––none that I knew of, anyway.  So we blazed our own trail, working hard to approach our unique challenges with optimism each and every step of the way.

Recently, I was reminded of the way I felt when Tyler was first diagnosed, when a woman with tears in her eyes approached me after one of my talks.  “I know you talk about how we can all learn to live and love this lifestyle, and I appreciate your suggestions for raising happy, healthy, gluten-free kids––but,” she seemed shy and embarrassed to continue, looking at the floor as she asked, “would you mind if I talked directly to Tyler?”

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But of course!  How could I have forgotten?  That need to talk to a child who had been through it was so compelling at first––and now Tyler could talk!  Sure you can, was my automatic reply, knowing that my 14 (and-a-half) year-old-I-at-least-like-to-pretend-that-everything-you-do-annoys-me son would be less than thrilled to take the call. 

I would love for Tyler to write an article telling you how celiac disease is no big deal in his life.  He did so a few years ago for my first book, “Kids with Celiac Disease,” when he wrote Chapter One:  “What it’s like to be a kid with celiac disease,” but that was when he was only ten.  That was before he turned into a teenager and had to start pretending not to want to do the things we ask him to do.

The truth is that this has never been a big deal for Tyler.  We gave him control of his diet from day one, which I believe is crucial.  We have always maintained an optimistic, yet realistic approach, with Tyler and his non-celiac but oh-so-supportive sister Kelsie, her being our guiding light in terms of inspiration and positive attitude.

One day, a few months after he had been interviewed on a local TV station, Tyler was approached by a woman who attended one of our R.O.C.K. (Raising Our Celiac Kids) parties.  I watched with curiosity and felt somewhat protective and guarded as this woman I didn’t know quickly approached him and took one of his hands in both of hers in what seemed to be an affectionate gesture.  “Tyler, you have changed my life,” she said boldly.  Then 13 years old, he did what most 13-year-old boys might do, and said nothing––shooting an anxious glance my way, looking for guidance, but I was as bewildered as him.  She began to get tears in her eyes as she continued.  “I’m 65 years old.  Three months ago, I was as sick as I could be.  I had been to dozens of doctors, and had a list of symptoms a mile long.  Everyone thought I was crazy––I even had to quit my job, because I was so sick.  I truly wanted to die.  Then I saw you on TV talking about celiac disease.  I insisted on being tested, and was positive for celiac disease.  I’ve been gluten-free ever since, and feel absolutely wonderful.”  With that, she gave him a bear hug, and he shot me a glance that I couldn’t read. 

I’ve learned not to embarrass my kids (well, sometimes I do it intentionally, but that’s another story), so I said nothing, and Tyler went about his business.  Several minutes later, Tyler approached me with a beaming smile.  “Mom, now I know why you do this!  It feels really good to help other people!” 

He has since decided that he’s blessed to have celiac disease, because it has provided him with an opportunity to reach out and help others––an act that even at his young age he realizes is as satisfying for him as it is for those he helps.  Quite a perspective for a teenage boy, if I may brag about him a little!

So while I would love for Tyler to write an article about this, those of you who have teenagers understand that it would be easier to teach my dog quantum physics than to have him sit down and write an article––so you’ll have to take my word for it.  Thankfully, at this point, Tyler is a happy, healthy, gluten-free young man who thinks a lot more about baseball and his friends than he does about the restrictions of his diet.  Other kids, teens, and young men and women I’ve met over the years have been equally optimistic and inspiring.  So rest easy, parents––your kids will, in fact, be just fine…and I really do know this!

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5 Responses:

 
Colette
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said this on
25 Jun 2011 5:51:08 PM PDT
Thank you.

 
Erin
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said this on
27 Sep 2013 9:52:59 AM PDT
Yes, I am with Colette. Thank you. My 5 year old is in the process of being diagnosed, but they are 90% sure it is celiac. I am in the grief stricken stage.

 
Lauren
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said this on
11 Jul 2014 11:18:20 AM PDT
My 15 month old son was diagnosed this past Tuesday. We had a wonderful pedatric GI who got us his diagnosis just 2 months after symptoms started showing (after a stomach virus is when his obvious symptoms began). We feel fortunate to know so early. More then anything I want to know what he will feel like as grows up with this disease. Our attempts are already to normalize this as much as possible and to not make him feel bad or weird to have celiac. My husband and we just had our blood tests today, and are eagerly awaiting our own test results and have completely de-glutened our home. This is quite a journey we have been on, and it has only just begun!

 
Rebecca
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said this on
11 Oct 2016 6:07:43 PM PDT
Hi Lauren, as the mother of a 14 year old girl diagnosed with celiac at 3, I know instinct is to remove gluten from the house. Don't. Use the safety of your home as a teaching zone for your son. He will learn and be more comfortable with making choices as he gets older. It will become second nature to him.

 
Lynn
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said this on
17 Oct 2016 3:49:08 PM PDT
Good insight; my nephew is 13 just diagnosed with celiac and even before this he only ate breads grilled cheese--no meats no veggies, as he has food texture issues. He says he will try new food items but then refuses. What can we do as a family to get him to eat before he gets severely malnourished? Any suggestions would be greatly appreciated.




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Check out this page and the advice on rice prep: http://www.bbc.co.uk/programmes/articles/2F1MDzyW55pg97Tdpp7gqLN/should-i-be-concerned-about-arsenic-in-my-rice

Hi Rachel and welcome I think you've found the single best site on the web for help and advice. Hope it's of use to you. I tested negative for celiac so no referral. My experience with NHS however suggests it could be worth phoning your Gastro's office and asking the admin staff there to check on this. Things get overlooked... I would avoid anything with those warnings on. It's a pain in the arse because, for example, it recently appeared on a brand of nuts I like. However having some experience of production and marketing environments that warning will only be going on the pack if someone in the company thinks there's a chance of contamination. There's always other products to choose from so I don't take the chance. Walkers crisps have given me a reaction, yes even the sodding ready salted ones It's something to do with their production processes. I think Gary Lineker may dance through the factory each week spreading handfuls of flour for good luck. Whatever, I now avoid them. My energy levels improved over a few months after the diet. It took longer the second time after my challenge. I was still noticing improvements / weird resolutions of odd symptoms up to 9 months to a year later... Lots of good advice here: All the best! Matt

Ah.... Settles back, dons funny hat, smokes pipe, plays violin, injects heroin etc... I think you need to treat yourself as your own science experiment. If you're ok at home with all of the drinks then you can almost certainly rule out alcohol intolerance and thank your bodies burgeoning super coeliac powers of gluten detection for the reaction. Clearly your powers have grown in the past five years young jedi... In which case maybe there's a drink you can order which would reduce this risk, maybe asking for the bottle and a clean glass, forgoing ice, straws etc, anything to simplify matters and reduce the number of contaminant variables. One thing I'd avoid would be 'mixers' from the shared line. Not because there's gluten filled drinks going through them, typically its just coke, lemonade and soda water, but because the nozzle sometimes dips into the drink that's being filled. Paranoid? Maybe, but I avoid them now and pay the extra for a bottle. A word on glasses. Most bars have a dedicated glass washer and they're good, to a point. I've worked behind a bar in the past and the washers are only on for a very short time, they can run up to 35 times an hour... I've seen lipstick on glasses from them and whilst the chances of contamination are probably slight... Now if you're out for a night at different places, it will be very hard to work out where its happening. So my suggestion is to go out to one bar only and pick a decent one. Speak to a bartender or manager, explain to them just what a special snowflake you are and get one definitely clean glass at the outset then keep it for the evening and just get it refilled. Pick one drink only and stick to it. I'd suggest wine as maybe its easier on the stomach than the bubbly prosecco and you can get the little bottles without any chance of contamination but that may be nonsense See what happens... If you're ok, then you have an answer. You've become more sensitive and your reacting to trace gluten. *removes funny hat, discards pipe, hides syringe...

This seems odd. No SIGNIFICANT villous blunting. Was there mild villous blunting? Increased intraepithelial lymphocytes?

Ugg, tell me about I thought I had bad gut bacteria for years. Carbs would just make be bloat and distend, sugars, rice, any kind of grain. Figured out in Feb, it was UC and that the sugars in carbs caused flare ups....I realize I am blessed I can nuts, I eat nut based breads, muffins, cakes etc, using stevia, monk fruit, and xylitol for sweeteners since they do not trigger the flare ups. >.> I am also addicted eating sugar free jams made with extracts, and a universal pectin that reacts with calcium water instead of sugar so I can use monk fruit to sweeten. (Cheaper to make this for my fruit cravings to buying sugar free jams) I also found a noodle by miracle noodles that is carb free they also make a rice sub...I use them in recreating dishes I used to eat all the time. NOTE the fiber in them is not tolerable to some people. But might look into it as a alternative. I think I did a post not to long ago about different forms of noodles and how to make them or get them for those with similar issues one of hte more intiruging ones is using eggs or egg whites mixed up and cooked on low eat in a pan into a thin sheet then cutting into noodles or using nordic wear microwave plates to make them. .....I recently found you can mix konjac flour, eggwhites, and hemp protein, up pour into one of those plates and cook into a tortilla. check my profile for my food issues lol list is huge, at least you can eat meats?