“We live in an American culture that places unreasonable value on height.” So said our pediatrician after I questioned the dramatic decrease in the rate of Gus’s growth starting at the age of 4.
When he was born, Gus was in the 80th percentile for height and weight. By the time he was diagnosed at 6 years old with Celiac Disease and Type 1 Diabetes, his height didn’t even register on the scale for his age. OK, my Granny Polly was 5’ tall, but Gus’s grandmothers were both tall. His grandfathers are 6’3” and 6’4”. His parents are tall, and at the time his brothers were in the 99% for height. When the endocrinologist assigned to treat Gus’s Diabetes met his brothers he ordered a batch of other tests. His new patient was simply too small for there not to be something else going on.
Celiac Disease has been called the “great pretender” because its symptoms can parade as so many things. In Gus’s case it was “failure to thrive.” Since his diagnosis in 1998, I’ve met children and adults who’s Celiac Disease has presented itself as gastrointestinal complaints, acne, poor teeth, depression, Attention Deficit Disorder, chronic fatigue syndrome, acute joint pain, even in one case, skewed blood work that imitated cancer; for three years oncologists couldn’t figure out what kind of “cancer” this boy had. When he tested positive for Celiac Disease and adopted a strict gluten-free diet his “cancer” symptoms vanished.
I’m not a doctor, and I don’t suggest that a gluten-free diet is the answer to all or even most medical complaints. I can tell you Gus is almost 5’10”, a three-season athlete who has excelled at soccer, ice hockey, and lacrosse and is now playing Ultimate Frisbee and hockey at Stanford. He went to The Island School for a semester – where he earned an advanced scuba certification – http://www.islandschool.org/ – after which he transferred to boarding school. His commitment to maintaining a gluten-free diet has been powered by a desire to grow, to be as tall as his brothers. In 14 years he’s cheated (knowingly) once.
All along the way we have worked to make his culinary experiences as similar to his peers as possible. Gus has been an enthusiastic ambassador and advocate for gluten-free cooking and eating, sharing food and recipes with friends and family whether or not they eat a GF diet. I give a lot of credit to the faculty and kitchen staff at Breakwater School, Portland, ME, North Yarmouth Academy, Yarmouth, ME, The Island School, Eleuthera, Deerfield Academy, Deerfield, MA, and Stanford University for consistently working to figure out how to supply a GF version of whatever was/is being offered at school.
I grew up in Palo Alto, CA. My parents had five children under the age of 7; unexpectedly the “4th” was twins. As the oldest, I learned to help in the kitchen at an early age. In the 1970s my dad became the buyer of wines, liquors, and gourmet foods for Macy’s, a job that meant worldwide travel for… wines, liquors, and gourmet foods. We were often taste testers, once sampling chocolate chip cookies made by tall man named Amos.
At about the same time a young mom named Mrs. Field started selling her outstanding cookies from a cart at a communal retail space on University Avenue. Her stall was staffed from 11 a.m. until “Sold Out.” After tasting her cookies one of my culinary goals was to recreate Mrs. Field’s “secret” recipe using the Toll House recipe as a base. When Gus was diagnosed with Celiac Disease the goal became to do it gluten free. Happily, our boys and their friends were willing to eat any number of failed batches.
The boys are grown and I ended my commercial baking venture, but because I love to cook, I’m keeping on keeping on, writing it down for Gus…and for you and your friends and families.