|This week’s introduction is written by Timothy Browning, a member of MINES HealthPsych Team.
Towards the end of her high school years, my sister started becoming very ill. She began to have trouble digesting food, her weight dropped to under a hundred pounds, and nobody in the medical community seemed to be able to diagnose the problem. She received a myriad of possible explanations including Crohn’s disease, irritable bowel syndrome, lactose intolerance, and one doctor even suggested a tapeworm.
Unable to digest food, she spent months living off of fruit juice and vitamin supplements. Several of her teachers had approached her guidance counselor worried that she had become anorexic. After about 6 months, she slowly began eating solid food, but the problems persisted. The food would cause her body to become swollen, and she experienced gastrointestinal problems every time she ate.
Eventually, after 5 years of constant pain and countless medical visits, she started to believe through her own research that she may have Celiac Disease (CD). Celiac Disease is an autoimmune condition that causes damage to the small intestine and prevents the proper absorption of foods. The biggest enemy to those affected by CD is gluten, a protein found in wheat, rye, and barley.
The University of Chicago Celiac Disease Center states, “The average length of time it takes for a symptomatic person to be diagnosed with celiac disease in the US is four years; this type of delay dramatically increases an individual’s risk of developing autoimmune disorders, neurological problems, osteoporosis, and even cancer.”
This may have been the case for my sister, as the ailment may have contributed to her intolerance to casein. Casein, like gluten, is a protein, which is found in nearly all dairy products. Even when gluten-free food options became more commonplace, just because something was gluten-free didn’t automatically make it safe for her to eat.
I was recently treated by my friends to a birthday dinner at one of my favorite places, a steakhouse. While everyone else was enjoying salmon, shrimp and steak, unfortunately my celiac disease-affected sister ate, essentially, a packed lunch. I remember many years ago after she was first diagnosed, she would spend 4 to 5 times the amount of money for a product that the average person would, only to throw away the whole thing after a few bites because the taste was atrocious. There were times when she would be in tears because she was so frustrated with the lack of availability of food that she could eat without going to the hospital. A 10-minute shopping trip for most people could take at least an hour, as the labels had to be scoured for a long list of obscure, sometimes unpronounceable ingredients that could be life-threatening.
Sometimes I would try to pick something up for her at a grocery store, and received strange quizzical looks from people as I’m squinting at the label, product in one hand, cell phone in the other, stumbling my way through ingredients like hydroxypropyltrimonium or stearyldimoniumhydroxypropyl. Eventually, she created an index card that I could use to cross reference ingredients to make sure I was purchasing a celiac-friendly product.
It has been wonderful to see the infusion of gluten-free products in grocery stores in the last five years. While there were gluten-free products like soy sauce, pasta sauce, and pre-packaged items like pizzas in the past, there was still a void of items to create meals with. Without gluten-free pasta to go with the sauce, the array of possible dishes was severely limited.
Gradually, the array of substitute products, combined with plenty of crash-and-burn kitchen experiments, have allowed my sister to replicate just about any item, without losing the original flavor and character of the particular dish. She has invented her own recipes for alfredo sauce, macaroni and cheese, “breaded” chicken strips, and even hosted a complete gluten-free (and casein-free!) thanksgiving meal with all the usual staples of the holiday.
Had it not been for my sister, I would probably be clueless about Celiac Disease. I would probably have written off the gluten-free revolution as just another diet fad that was sure to pass, never knowing how much someone affected with CD would have to alter their life. I would like to help expand the knowledge and understanding of the disease, in hopes that the accessibility and convenience of food that most of us take for granted will continue to increase for those affected by Celiac Disease.
People who want to read more about my sister’s experiences and view some of her recipes can do so at http://www.gfreeconsulting.com.