There’s been a death in the family, but it’s not what you think. We have collectively been experiencing the seven stages of grief, and all of us are in mourning. We are mourning food. We are mourning our new-found limitations of food, and the implications those limitations bring in daily life, social interactions, travel. Something as simple as a playdate is irreparably changed forever. Travel. Restaurants. Food runs the risk of becoming feared.
(Please note, dear reader: I am all-too aware that Celiac disease is manageable, by no means terminal, and fairly common these days, these writings are the voices in my head, and I respectfully do not seek to take away from others facing far more dark journeys – more on that later)
The first stage of grief is classically shock and denial. And boy, did we go down that river. Initially, when A’s tTg tests came back so high, we thought it was a mistake, incorrect, perhaps he was only highly sensitive to gluten and did not truly have celiac disease. Maybe only a “little gluten” was okay? But A kept getting sick, kept missing school, and kept experiencing a lot of the textbook reactions to someone who is being “glutened”. We placed our hopes and dreams in the extremely capable hands of the GI team at the hospital, and waited for our endoscopy date. The Doctors informed us that we must retain gluten in the diet on a daily basis in order to provide an accurate result, so I was instructed to effectively poison my child on a daily basis.
We split hairs. We gave A as little gluten as was possible to provide an accurate test result. We tried to make it fun with cinnamon buns from the bakery, dim sum with the family, or fluffy white bread and rolls. We continued in a state of numbness and shock and continued in our daily lives. We all got a little numb.
We started to learn things. Little tidbits like flour’s ability to stay airborne for up to 24 hours. Like gluten came in some dry spices. Like gluten was in some chicken stock. Why? Why is there gluten in spices? What does wheat have to do with dry mustard? (Google it.)
Initially I put on a brave face after the blood test, and marched A around Whole Foods, with the objective of illustrating just how much was available gluten-free and non-GMO. He nearly broke my heart when he looked at the price tags in the store and asked me if I would have to get a second job to pay for his special diet as it could clearly get quite expensive. Initially it took us 3x the time to go down the grocery aisle, as we were not just reading fat/sugar content on labels, but now we were reading all the really big and small words on all the labels of all the things we picked up. This couldn’t be our new reality. This was the sick joke being played on a family of foodies. We all loved to cook, for goodness’ sake. We competed within the family for “best dish” and “best appie” on Saturday nights. We loved food.
This couldn’t be our new reality.
Turns out, it was.