You’ve received the daunting news that your child has celiac disease. At this moment you might be feeling guilty for not recognizing her symptoms sooner, perhaps pondering the possible triggers, or piecing together the myriad symptoms that have puzzled you for the last few months…probably years. You might even be wondering if you yourself have the disease. Or is it more likely that greasy Chinese take-out just isn’t sitting well with you anymore? Whatever you’re thinking, there’s a way not to approach your son or daughter’s celiac disease. In a previous blog post, I cover things that you should do during your child’s first gluten-free year. This is my list of don’ts.
Don’t ignore the diagnosis.
You probably now know that celiac is a serious autoimmune disease. Just like any other disease of this kind, it can’t resolve itself, nor can your child grow out of it. Please understand that with continued exposure to gluten, your child’s small intestine will incur further damage which could lead to malnourishment and increase her risk for additional autoimmune diseases. The ramifications of celiac-denial are too serious to ignore. Celiag.org has this helpful article explaining celiac disease.
Don’t navigate celiac blindly.
Thankfully, there are many trustworthy medical professionals and online resources available to help you and your child navigate this disease. Chicago Celiac Center, Beyond Celiac, and Celiac.org are great places to start. Staying well-informed will give you the reassurance of knowing you’re providing the best care for your child. Plus, you’ll be privy to the newest gluten-free foods, as well as celiac-related research and events.
Don’t throw a farewell-to-gluten party for your child before going gluten-free.
I admit that this idea was tempting when my son was first diagnosed, but his doctor advised otherwise. Your child’s immediate healing is the main priority, and gluten—even a bite here and there—cannot be a part of the plan. So, if you have any parties for your dear celiac, keep gluten off her personal guest list.
Don’t allow cheating!
Researchers have found that a mere crumb of gluten can cause issues for a celiac: not a giant slice of gooey Chicago deep dish pizza, but a seemingly harmless crumb! This is one diet that will truly hurt you if you cheat—even once. Read more about that here.
Don’t complain about celiac around your child.
Though your child’s celiac involves you, it is not about you. Yes, the label-reading, the cooking precautions, the necessity of having to carry snacks around, and the fear of finding a safe restaurant experience for your child are very real. Celiac can be a source of stress at times, but don’t burden your child with that. After all, she might already be having her own emotional struggles with the disease, and it would be hard to know if she’s even feeling what we’d consider “well.”
Don’t be lax in reading food labels or in gluten-free food prep.
You should always have a homemade or store-bought stash of gluten-free meals and snacks for times that you are too tired, sick, or hurried to cook safely for your dear celiac. Also, any visiting family member or babysitter would appreciate having foolproof food options for your child. Trust me, you’ll appreciate that peace of mind while you’re away.
Don’t trust that foods without gluten ingredients are actually gluten-free!
The FDA’s Food Allergen Labeling and Consumer Protection Act (FALCPA) of 2004 requires that wheat be listed on food labels as one of the 8 major allergens, but it won’t highlight other gluten-containing ingredients, such as rye, barley, or malt. Additionally, you will not know if a particular food is made in a facility that processes wheat unless it’s voluntarily listed on the label or you happen to contact the manufacturer directly. It is important to note that the USDA–not the FDA–regulates the labelling of meat, poultry, produce, and egg products, and they do not have mandatory allergen labelling. Please take the time to shop wisely!
Don’t keep your celiac in the dark.
If she’s old enough, teach your child how to read labels and explain the consequences of deviating from her diet. She will need to be her own health advocate some day soon and it’s never too early to start.
Don’t overcompensate with sugary foods.
When my son first got diagnosed with celiac disease, I kept fighting the urge to pacify him with gluten-free cookies and other sweet treats, because I felt badly this he was missing out on so many of the foods he used to love. We all know some of the concerns of a high-sugar diet, but the mere fact that children with celiac disease have an increased risk of developing subsequent type 1 diabetes makes me a bit more mindful about his sugar intake. The genetics for celiac and type 1 diabetes are very similar, with roughly six percent of celiacs also having type 1 diabetes. Let me emphasize, however, that there is no known link between sugar intake and developing type 1 diabetes, and unlike with celiac, there is no known trigger for this autoimmune disease. Regardless, you don’t need to be a dietitian to know that if health and healing are the goals for your child, a high-sugar diet isn’t the ideal option.
Don’t miss your child’s follow-up doctor appointments.
Your doctor will most likely order new bloodwork in your child’s first few months to a year post-diagnosis. It is important for you, your child, and her doctor to know if she is responding to the gluten-free diet by healing and growing. My son didn’t seem to pay much attention to what was discussed during his first 12-month check-up, but hearing how much he had grown during that time sure made the smallest-in-his-class feel a whole lot taller that day.
Resource Alert! The Celiac Disease Foundation has a helpful Follow-Up Checklist that you can print out and bring along to doctor visits to ensure that your child’s needs are adequately met.
Don’t be caught with your hand in the cookie jar—literally.
Be mindful that giving up conventional cookies, cakes, and confections would be hard for any child. Though there are so many delicious gluten-free sweets available now, they can’t always replace some of your child’s former favorites. You might want to indulge in your gluten-y delights on the sly for a little while.
Don’t forget the most important thing a parent of a celiac child can do.
The first and last thing a parent should do for their sick child is to show them extra love and support. Celiac impacts both the body and mind, so remember that your child’s disease could still be making her feel ill, as well as causing mood swings, focus issues, or crankiness. Be patient, hopeful, and celebrate any improvements in her quality of life as they come. I assure you, they will come.
Best wishes and thank you for reading!