Finding Communion with 3 Celiac Kids

Does Celiac Disease affect your whole family, like mine? I have found it so much more challenging to diagnose and raise Celiac kids than I thought it would be. After all, I am Celiac myself.

=====I wasn’t diagnosed with Celiac Disease at 15 years old, I started showing symptoms much earlier in childhood. Very few people knew what Celiac Disease was in the 1970’s and 1980’s, so it took a long time to figure out what was going on. Anxious to avoid delayed diagnosis, I’ve been vigilant with my kids, sure I wouldn’t miss any sign that they may have the same issue.

=====I had my kids on a gluten free diet from about age five until they were ten years old (they are now 11, 14 and 17) because they complained of frequent gut pain. This wasn’t easy in the 2000’s when gluten and food allergy awareness was much lower. Many moms strongly suggested that I was being over protective and potentially damaging my kids. This was particularly the case with my son.

=====By first grade, it was clear that my son not only should not have gluten, but that he was wildly sugar sensitive as well. He had all the symptoms of Diabetes but his blood sugars measured as normal. On the advice of our pediatrician, we put him on a low glycemic, no sugar diet and his symptoms cleared up. After following that strictly for five years, he now can handle sugar if it is part of a meal.

=====At age ten, I let all the kids make their own choice on their diets. My son was so reactive to gluten, he stayed gluten free and low sugar. He won’t even go back gluten on for a few weeks so we can do the official Celiac test. The girls, however, jumped into a bowl of wheat flour like kids at the opening day at the pool.

=====During this time, I charted their growth meticulously. I quizzed about diarrhea. I steered them away from overindulging in bread. And, everything seemed fine for a year or two.

=====But then I noticed both girls had developed small bumps on their upper arms, a common side effect of Celiac Disease. They also displayed rashes on their faces that flared up from time to time. But adding confusion to the matter, not all their symptoms were the same.

=====My older daughter seemed to be slowing down in growth and weight gain. My younger daughter was growing like a weed but was the first person ever to break her arm in a local trampoline class, a possible sign of weak bones. I was watching, but confused by the disparate symptoms and the fact that no one was having diarrhea, a classic Celiac indicator. So, I waited longer and watched more. In the end, it was a Lenten ritual that told us what was going on.

=====My teenager gave up gluten for Lent this year. During that six weeks, her skin issues nearly cleared. So I had my younger (eleven year old) daughter go gluten free and saw the same improvement. They also had other symptoms that resolved, though we are still waiting for my older daughter’s growth to reboot.

=====I surely did not want this for them, but given my history, it’s pretty clear all my kids are Celiac or at least very gluten sensitive.

=====To be honest, it was a LOT easier when it was just me. Navigating menus at restaurants for just me was not very hard. I like lots of kinds of food and could quietly make my choice with a sidebar with the waiter.

=====But for all four of us, there is a lot more discussion required. My kids are pickier eaters than me and picky in different ways from each other. Finding four appealing gluten-free entrees at a restaurant is exponentially more challenging. It can be really stressful and take the “communion” out of the experience. This is ironic because we most often choose to go out to eat to relieve our stress and give us space to bond. It’s like taking a cab in Paris. It seems like it should be a treat but walking is a lot less stressful.

=====I want to put the communion back into our dining out experiences, to have our mealtime be a relaxing, bonding experience where we nourish our bodies and souls. We could just eat at home all the time, but we live in San Francisco and enjoying the wonderful restaurants here is part of the experience, not to mention that our busy schedules dictate that we eat out at least once or twice a week. We all share in cooking dinner, but there’s just not someone available to cook every single night.

=====As the school year starts, I’m having to think about this more. I’d love your suggestions. What have you learned raising Celiac kids? How do you keep mealtime joyous and happy and avoid the stress when eating out or at events like weddings? Share your tips and I’ll republish for all of us to benefit. We can share in a virtual communion and help each other build a better bonding experiences for our families.

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