As a fellow parent of a child with Celiac, as well as a child with non-celiac gluten sensitivity, (and a Celiac myself) I understand how overwhelming the gluten-free diet can be at first, because I’ve been there myself.
Remember that you’re not alone, even if you feel isolated at the moment. As hard as it may be to believe, within a few weeks or months you will be well on your way to a new and gluten-free lifestyle for your child and not long after that you will wonder why you ever panicked at all…
A parent’s role
The ability of a child to cope with CD or GS is directly affected by their parents’ attitude and approach to
life after diagnosis. And of course by family and friends as well. Try to get everybody on board as supporters. In many ways CD is what the medical industry refers to as “the Cadillac of diseases,” and the same can be said about gluten sensitivity. In reality, there are much worse things than having CD or GS. G-free kids don’t need needles, surgery, chemotherapy, transfusions or even medicine, to live a long and healthy life. The toughest challenge is learning how to adjust to the gluten-free diet, so be patient with yourself. The GF diet can be done and it gets easier every day. Begin by putting CD or GS in its proper perspective and you will start this whole process feeling fortunate. There are many resources to help you help your child lead a full and enjoyable gluten-free life.
Treat your child like a normal kid
Make sure that — as with any special need — you (as a parent) don’t make your child feel different or not good enough. Parenting skills and attitude from parents and extended family will play a big part in making your g-free kid feel normal. At first parents might feel overextended and overprotective of a child with a newly-diagnosed condition, so be sure to seek out support while you’re learning the new skills involved in maintaining a GF diet for your child. Teach and represent these attitudes and skills to grandparents, friends, and extended family — and everyone else in your child’s life.
Being on a restricted diet is just part of life and reality for millions of kids, just like other
kids who have allergies, asthma, etc. Keep these differences in their place. Don’t make your child’s condition seem like such a huge thing and, above all, please don’t let your child feel damaged. You cannot control the way genes are passed on throughout a family, and genes are what gives a person all kinds of characteristics, including CD or GS. These conditions need to be seen as something to be embraced, and that your child is lucky to have found out he or she has it — because so many people really are left to wonder what they have and suffer the consequences of undiagnosed CD and GS for many years. If you allow things like bad attitudes, pity, resentment and guilt to come into play, you’re setting yourself & your child up for a much worse experience than the condition is in and of itself, so keep your chin up!
It’s also important not to become obsessed with symptoms and talk about food too much. Try to not be a constant poop checker or ask 20 questions every time your child comes home from school or party or play date. Try not to blame every minor illness and infection on CD or GS. All children get sick sometimes, so treat minor illnesses as matter-of-factly as possible. This will go a long way in making them feel normal.
Deal with downers
There may be times when you will be blown away by the insensitive things some people will say, right in front of your Celiac child. Always be ready with a positive remark that will let that person know that you feel the opposite. Even if you agree on the inside, never let your child know that. Try to talk to that person afterwards, in private, and explain to them why you don’t want your child hearing anything negative about CD. Even though it’s uncomfortable for everyone, have the conversations anyway. Your child is worth it. You should let everyone in your child’s life know that you want to keep things positive for the sake of your child. He or she will be on this diet for the rest of his or her life, and parents need to start the child off on the right foot with everyone around showing full support. See the supporters page for more ways to handle people who just don’t get it…
Ownership of the diet
At some point you’ll want to think about how you can teach your child to negotiate his own way in a gluteny world as he grows up. Eventually, you will want to make sure you “help the child to help himself,” which will move him towards self-care, self-management and independence. Make sure no one ever treats or labels your child as a “sick child”— especially within the family and in how you introduce your child to the school and community. Don’t act like you are trying to form a protective bubble around your child, but instead try to form a circle of help around your child so he knows he is fully supported. Try not to emphasize differences, problems, what your child can’t have, etc.— especially when they are within earshot. That will only hinder their progress and feelings of self-worth.
Contact one of the national celiac disease organizations (links are here) or check the internet for a support group in your area. Go out of your way to meet other parents and children who share your experience, which will help you and your child feel more comfortable and successful. Be sure to become part of a local or online community where information is shared about gluten-free food. Get involved and you won’t feel so isolated.
Continue to seek information from other people and from the internet, including about restaurants and travel destinations. There is a plethora of information on the web alone and new information comes out every day. There are tons of discussion groups, mailing lists, forums and websites about CD and GS on the internet that will keep you up to date.
How to explain things to your child
A parent needs to be ready with good answers that leaves the child feeling confident and assured, and puts the whole thing into perspective. There are tons of online resources which I will link to around this website, but my best advice for parents & kids is to:
Buy and read books about being gluten-free. Why is it that we will spend so much money on GF food products for our kids (that are gone in a flash) yet we don’t buy them a gift that may change his or her attitude and understanding for life? Something he or she can hold, re-read and treasure, long past when a snack is gone… Something your family will want to share with others — thereby spreading awareness. Invest in your child… they are so worth it. At this time there is an ever-increasing number of books to choose from. Here are some links:
Fellow parents: Stay positive! You can do this! It is a demanding diet that will require the dedication of your free time to understand your child’s condition and diet — and to learn how to manage it — but you will get there. The number, quality and variety of gluten-free foods and baking products continues to grow. So do the number of online resources available to you for help, which include this website. Look around for much more…
Last but not least, remember to show your child some or all of the cool resources on the Kids Stuff page, then show them other kids on the same diet, after you surprise them by showing them their own photo on the online g-free kids photo album! (Directions for submissions at the bottom of the album.) Enjoy!