by Leslie Bari
In the past year, I have learned a lot about myself as a parent, about my children, and about things I never thought I’d know so much about.
On June 19, 2018, after some routine bloodwork, we got a call that our son Jax had very elevated TTG (Tissue Transglutaminase) levels that were a strong indicator of Celiac Disease. We were shocked. We were sure something had to be wrong with the blood work so we had it repeated. Again, his TTG levels were off the charts. After an endoscopy of the small intestine at CHOP, Jax was diagnosed with Celiac Disease.
Most people don’t even know what Celiac Disease is – our own family had no idea. We now know that Celiac Disease is a serious autoimmune disease that afflicts about 3 million Americans. It is not an “allergy” in the traditional sense that it triggers an anaphylactic reaction such as what might happen from a peanut allergy, however, Celiac Disease should be viewed as seriously as severe peanut allergies. There is no medicine or surgery available to treat this Disease. To date, Celiac’s research has produced only a single approved treatment — strict adherence to a medically necessary and lifelong Gluten free diet, no exceptions. But, as Celiac Disease researchers agree, “there is no such thing as a truly gluten-FREE diet,” because of the constant risk of cross-contact with gluten, and gluten is in 80% of our foodstuffs.
Ingesting even trace amounts of Gluten (i.e., a crumb) can trigger a severe autoimmune reaction in a person with Celiac Disease, so finding safe enjoyable foods to enjoy and preventing accidental ingestion by practicing food safety, is so important.
Gluten is found in wheat, rye, barley and some oats. One might think that this would mean no bread, pasta, cookies, crackers, cake, etc. But, Gluten is actually “hidden” in other unsuspecting items such as soy sauce, broths, spices, soups, gravy, salad dressings, breakfast cereals like Rice Krispies that contain malt – and even in medication!
So what does this all mean as a parent? You find a new normal. You try and make everything as normal as possible for your child. Lots and lots of preparation – bringing our own food out to dinner (going out is not so easy any more), to birthday parties (no more pizza and cake) and packing a suitcase of gluten free food to go on vacation. Education of friends, family, teachers, etc. – basically anyone who comes in contact with Jax.
So what does this all mean as a parent? You find a new normal. You try to make everything as normal as possible for your child with lots and lots of preparation. Whether it is an attempt at “dining out,” going on vacation, birthday parties, school events or any other occasion involving food, we have to comprehensively plan.
With that, there is education of friends, family, teachers, etc. – basically anyone who comes in contact with Jax. And defense – this is probably the biggest role. Yes, you can try and plan for every scenario; you can keep snacks in the classroom for when there is a birthday celebration, you can bake gluten free treats for the school bake sale. But there are so many unexpected scenarios that come up that you can’t plan for.
Often, as a parent of a child with Celiac Disease, I feel so bad for Jax, and all the other kids that have to go through this – whether it’s Celiac Disease or some other allergy. You feel like you are constantly denying your child and it’s heartbreaking (No, you can’t have the water ice, the soft pretzels, the birthday cake, the list goes on.) I know that’s life and you have to be adaptable (one of the lessons we are trying to learn along this Celiac Journey), but as a parent it can be frustrating and sad that your child can’t just spontaneously eat whatever other kids are eating. All in all, Jax has been amazing. Resilient. Adaptable. Willing to try new things. And at this point, until a cure is found for Celiac Disease, that’s really all I can ask!
What can you do if your child has Celiac Disease or another food allergy?
Find resources (such as national organization like Beyond Celiac and Celiac Disease Foundation) or a support group – whether that’s for you or the child. (The Gluten Intolerance Group has a special group called Generation GF targeted to kids, and in 2020 they are hosting a teen summit in Orlando).
Find a community; your village – I found one on Instagram with other gluten free bloggers who are a great source of information and I’ve even gotten to meet some of them in person. Find special events that your child can attend – we went to a Gluten Free Expo where Jax could eat ALL of the food. And our family went to a gluten free cooking class. Try to see the positive and make the best of it. Have a positive attitude, and it will rub off on your kids.
Leslie Bari is the mom of Jax (age 6) and Lexi (age 14) and has unexpectedly become an expert on Celiac Disease. She runs the blog/instagram account @glutenfreefinds_pa where she and Jax navigate the Gluten Free world to find and share the best Gluten Free products. Leslie and her husband, Jon, are also working with leading medical centers to try and increase Federal and private funding for Celiac Disease research. In “real life” Leslie and her husband Jon run The Constitutional Walking Tour of Philadelphia the Spirits of ’76 Ghost Tour.