One of my most prized possessions is a tattered, stained copy of a blue New York Times cookbook bequeathed to me by my mother, may she rest in peace. She would never in a million years have believed that Celiac Disease would force me to reinterpret that cookbook. But after my diagnosis, I did just that. And I immediately embraced gluten free living like it was my job. Most of my hair has grown back AND I never leave the table with stomach cramps.
“Hair? You lost your hair?”
“Yes. But wait. I’m getting ahead of myself.”
When I was 17, I attended Boston University School for the Arts, my parents believing (and so did I) that I was destined for Carnegie Hall. After a few years of 6 – 8 hours a day practicing piano in the school’s cavernous basement, I decided that I needed to refocus my musical aspirations. Thinking I might have a knack for teaching music to kids, I decided to switch my major, instead studying to become an elementary school music teacher. I got a teaching job immediately upon graduation, but after four years, I refined my aspirations even further, got a Masters Degree in Early Childhood Education from Arcadia University and began teaching music to preschoolers. It was around that time that I began to compose songs for kids. While the songs were mostly aimed at children, it wasn’t long before adults told me they liked my songs too. I am now a multi-award winning fulltime performer, composer, and keynote presenter in the field of music and Early Childhood Education.
From as early as I can remember until March 2005, I had incessant stomach aches, primarily after I ate. Didn’t matter if I ate at other people’s houses or at a restaurant or at home, I always had terrible bloating. But I always, always, always blamed myself, believing for years that it was my lack of self-control. I always assigned blame to myself, thinking it was because I overate. What I thought was “overeating” wreaked havoc on me, both physically and emotionally. I beat myself up mercilessly, thinking I just couldn’t control myself when it came to food. I honestly thought I had really big, in fact what seemed like insurmountable problems with food. I had no idea what the actual problem was. It was a puzzle. I mean, I wasn’t bulemic and I wasn’t anorexic. What the heck could it be? I had no idea of the damage that what was going on inside of my body.
Why did I start this blog? In March of 2005, after my hairdresser told me that I had patches of bald scalp on my head, I went to three different dermatologists, searching for an explanation. The first two told were quite patronizing, they both told me to calm down, that my hair would grow back. That didn’t help, trust me. The third doctor did a hormonal test and diagnosed me with Alopecia, an autoimmune disease that affects the hair follicles and can cause everything from small patches of baldness to total body hair loss. I am grateful – the hair loss was confined to a 2x2x2 triangular patch on the back of my scalp and a long letter-C shaped patch next to my right ear.
Still, he had no answers or explanations other than it could have been caused by a virus. He told me that my hair MIGHT grow back if he injected an obscene (my word) amount of cortisone into my bare scalp. No guarantee. My hair might fall out again, even after it grew back. And I might lose it in other places too. Um, no thank you. Let me do some investigating before I try that voodoo. But let me say, for the record, this doctor was my first hero. Had he not been willing to do the necessary tests, I might never have gotten to the root of the problem, you should pardon the pun:).
I read and read and read everything I could get my hands on, trying to determine why I had Alopecia. Nine months later, I came across a book called “Dangerous Grains” by Dr. Ron Hoggan. Ron Hoggan: my second hero. In his book, Dr. Hoggan made a strong argument for a connection between Celiac and a wide array of autoimmune diseases, including Alopecia. I immediately called my internist and asked for a Celiac blood test. Funny thing, one of my sisters had been diagnosed with Celiac (and Hashimoto’s Thyroid Disease) about six years earlier, but her doctor never suggested that the rest of her family be tested. I still curse him, bastard. P.S., my blood test came back positive. How did I know? My internist sent me a form letter telling me so. I doubt she’ll ever read this, but if she does, I hope she’s changed her method of delivering that kind of information. I was devastated and had nothing but a piece of paper telling me to give up gluten, whatever the heck that was. What it didn’t say, but I eventually learned, was that I was about to have my life completely turned upside down. Thank goodness my sister had already figured out a way to live gluten free without it destroying her will to live.
In November 2005, I began eating a gluten free diet. In the middle of that month, after traveling to Washington, DC for a week of gigs and calling my sister at least a million times for help and advice, trying my best to maintain a gluten free diet, I returned home frustrated and depressed. How would I travel? How would I entertain guests at home? How would I go to other people’s homes for dinner?
My internist initially told me that I didn’t need to have an endoscopy to confirm the diagnosis of Celiac Disease. But after trying my hand at conforming to gluten free eating and not feeling very optimistic, I called the head of the Celiac Clinic at Beth Israel Hospital in Boston and scheduled an endoscopy. I wanted to know the extent of my intestinal damage. I wanted to know, beyond the blood test results, why I needed to follow this stupid diet. Please don’t take this as advice. I’m not suggesting that anyone else follow my lead. You don’t have to have the endoscopy. That was my personal choice.
“Yes”, he said, “you have scalloped intestines, a certain sign of Celiac Disease. And yes, you must be on a strict gluten free diet for the rest of your life.” Done, end of subject. But this time, unlike my return from Washington, DC, when I was ready to call the gluten free diet quits, I knew I had to commit myself to it. Does this mean that the stomach aches and bloating I had been plagued with for years might disappear? My hair might grow back? Ok, I was now ready to sign up. I was ready to be a member of the club.
Fast forward. Three years after going completely gluten free, the hair on the back of my scalp completely returned. The hair loss next to my ear grew 75% back. Stomach issues became rare, the exception being when I overate (yup, even now, sometimes I eat more than I should!) or the few times I inadvertently eat gluten (not a pretty picture). Oh yes, and I pretty much gave up dairy about a year into being gluten free. That helped significantly as well. And I’m almost completely eating a plant-based, non-animal diet. While I never in a million years thought I’d give up eating flesh, it works for me. I am a new person. And I like the new me. And the rest of my family does too. Let’s just say that my mood fluctuations have all but disappeared. Replaced by a mostly (what do you want, I’m an artist!) calm demeanor and a fierce (or wicked, as they say in these here parts) desire to cook and bake. And write and record songs for kids. And sometimes for grown-ups too.
Thank you for letting me share my story with you. And now, pull up a chair and stay awhile. Browse through my gluten free recipes (mostly dairy free, too), leave a comment or two. Let’s start a friendship! Glad to make your acquaintance. I also invite you to do two things – 1. subscribe to my blog so that you get regular updates when I add new posts 2. register for my newsletter where I write about current gluten free topics and let readers know about programs I offer. Both of these can be found in the right sidebar of this website.