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Kids and Celiac Disease

R.O.C.K. Raising Our Celiac Kids

The information and philosophies that you will find in the kids' section of this site are based on more than 20 years of research and experience. The kids' site is written and managed by Danna Korn, founder of R.O.C.K. (Raising Our Celiac Kids), a free support group started in 1991 for families of kids on the gluten-free diet. Throughout the 20+ years of offering support to R.O.C.K. parents while raising her own celiac child, Danna has heard every question in the book: How do we send them to school? How can we keep them from feeling different? How do we handle birthday parties and other special occasions? How can we talk to family and friends about this? Should the entire house be gluten-free?  Are these crazy emotions I’m feeling normal?

More than 20 years since its inception, there are now more than 100 R.O.C.K. chapters in four countries, and the number of chapter groups continues to grow as awareness of the benefits of a gluten-free diet spreads.

R.O.C.K. welcomes friends and family of kids who are on the gluten-free/casein-free diet for any reason (e.g., as part of a dietary intervention protocol for autism, Asperger's Syndrome, ADD and ADHD).  Other websites that you might find useful are:, and Table of Contents:

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    Image: CC--Jay

    I run into many parents who are in quite a quandary about instituting a gluten-free diet for their child. A typical scenario is that one of the parents is gluten intolerant and is highly suspicious that their child is as well. Due to the child being 'relatively healthy' the non-gluten intolerant spouse suggests that the child be able to 'live a little' and enjoy the cake and pizza that is so prevalent during children's parties and sporting events.

    It is common for school teachers in the United States not to know what student has celiac disease, or allergies of any sort. Most schools don't have formal systems so that the principal, school nurse, teacher, or cafeteria workers know when a child has celiac disease or food allergies. An informal game of roulette is played, where everyone assumes that everything is fine – that is, until a child has a heath reaction.

    Parents can help empower celiac kids with a few simple tips. Photo: CC--Scott Swigert

    Following a handful of basic tips can help parents to empower their celiac kids early, and that can help make their lives healthier and easier as they move into adulthood. Huff Post recently featured a good article on empowering kids with food allergies, including celiac disease.

    The article, by Miriam Pearl, suggests that parents seek to promote awareness and self-reliance in such children, rather than simply providing for them quietly and looking to protect them from allergens.

    Image: CC--Jónatas Luzia

    With summer coming soon, many parents want their child to experience summer camp. If your child has gluten intolerance (and/or other special dietary needs) the summer camp anticipation and experience itself can be anxiety provoking for you, and for your child. As a parent, it is normal to have concerns about sending your child to camp, of course, particularly when the camp is providing meals.

    Bully Advance Screening Hosted by First Lady Katie O'Malley. by Jay Baker at Baltimore, Maryland. Image: CC--Maryland GovPics

    "What if the kid you bullied at school, grew up, and turned out to be the only surgeon who could save your life?" --Lynette Mather

    If you ask any high school senior what in their life has changed the most since kindergarten, statistics show that many would answer moving from one school to another. However, the more drastic of changes are seen such as illnesses diagnosed during these critical school ages. In 2009 I was diagnosed with celiac disease, and that diagnosis has impacted my life in both positive and negative ways for my past, present, and future time at Indiana Area High School and beyond.

    Image: CC--U.S. Department of Agriculture

    The 504 Plan stems from Section 504 of the Rehabilitation Act of 1973. This section prevents discrimination against public school students in grades kindergarten through 12 because of disabilities. A 504 plan is meant to "remove barriers" to learning by providing a specific outline on how to make accommodations or modifications on a student-by-student basis.

    One thing I have noticed since becoming a parent is how every place we go there are treats and candy. Even cashiers hand out candy at the checkout. Food is everywhere. Our kids are constantly being bombarded with sugary baked goods and salty snacks.

    Photo: CC--Damian Gadal

    We know that celiac disease afflicts almost 1% of the general population. We also know that about 12% of the general population has non-celiac gluten sensitivity, as indicated by elevated IgG class anti-gliadin antibodies in their blood. Although elevated antibodies identified by this test are often dismissed as "non-specific", they are clear evidence that the immune system is mounting a reaction against the most common food in our western diet.

    This week I have noticed many blogs/articles claiming that the only illness that can be caused by gluten is celiac disease. Yes, they state that celiac disease alone needs a gluten-free diet. I totally disagree with this distorted out-of-date viewpoint. There are tens of millions of non-celiac people who testify that gluten causes them significant harm.

    Photo: CC--jryde

    How do you know when your child has gluten sensitivity, gluten intolerance, or celiac disease? If gluten issues run in your family and you know there is a predisposition to having problems with gluten in foods, then you may be alert to signs that it has been passed on to your child.

    A chef speaks to customers about their order.
    This article originally appeared in the Autumn 2003 edition of's Journal of Gluten-Sensitivity.

    No matter what your reason for your dietary restriction, one of the hardest things about this diet is talking to people about why you must be gluten-free, and trying to explain the diet itself.  Responses range from complete understanding (sorry, this is extremely rare), to people who think they understand but don’t (“Oh, this is just like when I gave up liver for Lent!”), to those who don’t care an iota about your diet, to the other 95 percent of the population who really want to understand, but just don’t get it.

    Tyler is on the cover of Danna's book
    This article originally appeared in the Winter 2004 edition of's Journal of Gluten-Sensitivity.

    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.

    A field of quinoa, which is a gluten-free grain
    This article originally appeared in the Spring 2003 edition of's Journal of Gluten-Sensitivity.

    -Yes, there’s more to life than rice and corn!

    Variety, it’s been said, is the spice of life.  So what’s a person to do when they’re told to eliminate wheat and/or gluten from their diet?  Most turn to rice, corn, and potatoes—an adequate set of starches, but ones that are sorely lacking in nutrients, flavor, and imagination.

    Are you or a loved one in denial about a diagnosis of celiac disease?
    This article originally appeared in the Autumn 2005 edition of's Journal of Gluten-Sensitivity.

    You’ve all heard the joke proclaiming that “denial is not a river in Egypt.”  No, it’s not.  What it is, though, is a very real issue for many, if not most people who have been diagnosed with celiac disease or gluten sensitivity.  There are a couple of types of denial—the first type affects us—while the other type affects those around us.

    This article originally appeared in the Summer 2003 edition of's Journal of Gluten-Sensitivity.

    -When “our product isn’t gluten-free” doesn’t necessarily mean “our product isn’t gluten-free”

    You’ve found a food you’d really like to eat. You’ve read the label, and it looks as though the product might be gluten-free.  You’re drooling!  You can dig in, right? Wrong. It’s a good idea to call the manufacturer to confirm that there aren’t hidden sources of gluten.

    Diagnosed with Celiac Disease?
    This article originally appeared in the Summer 2004 edition of's Journal of Gluten-Sensitivity.

    At first, a diagnosis of celiac disease can be daunting, to say the least, and for some people, even devastating.  It means giving up some of your favorite foods—pastas, breads, pizzas, cakes, cookies, and pretzels—at least as you used to know them.  So why should you consider yourself lucky if you’ve been diagnosed with celiac disease?  Because you’ve been given the key to better health.

    When Friends, Family or Loved Ones Just Don't Get It by Danna Korn
    This article originally appeared in the Winter 2006 edition of's Journal of Gluten-Sensitivity.

    The gluten-free lifestyle is a big part of who we are.  So when friends, relatives, and loved ones don’t get it—I should clarify—when they seem to choose not to get it—we sometimes get a little cranky.

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

    In the 13 years I’ve been involved in the wonderful world of “gluten freedom,” one of the questions I’ve been asked most frequently is whether or not the entire family should be gluten-free.  For parents who have kids on the gluten-free diet, this seems to be a natural instinct––if Johnny can’t eat gluten, none of us will.  But I’m not sure that having the entire family go gluten-free is the best thing––unless, of course, it’s for health reasons (I, for example, choose a gluten-free diet because I believe it’s healthier).  This is one of those questions that has no correct or incorrect answer, so I’ll share with you, for what it’s worth, my personal perspective on the issue.

    This article originally appeared in the Summer 2002 edition of Celiac.coms Scott-Free newsletter

    This article appeared in the Spring 2005 edition of Celiac.coms Scott-Free Newsletter. Celiac.

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