The experience of health in my family is somewhat of a dichotomous one. I was, ostensibly, born healthy, to relatively healthy parents. My brother, two years my junior, was born with eczema and acne, was colicky, and had allergies and asthma that sent him to the hospital many times in his youth. To everyone’s great delight, he always emerged unscathed and life moved forward.
I suppose the first sign of trouble was around puberty for me. I was a very active young professional horseback rider, and I had a career in it until my allergies suddenly presented with the same severity my brother’s had at birth. My asthma was crippling, and I experienced profound mood changes.
The contrast was stark: my brother, once unhealthy, was strong, while I was in for rounds of tests after years of being perfectly and robustly healthy. I finished high school well, went to Duke University, and there began to have problems again.
I was experiencing seemingly random weight gain, brain fog, reoccurrence of asthma and allergic symptoms, and was constantly tired. At the inception of my celiac symptoms, I thought I was experiencing relatively normal responses to college: drinking beer for the first time en masse, eating pizza at 2:00am, and in general treating my body as disposable.
My future husband, Thomas, had been watching my body fall apart for the few months he had known me. Thomas pointed out that I had used an entire 160-puff inhaler from my pulmonologist in the course of a few weeks, and that I’d been to the hospital to no avail at least twice. I was at the end of my rope; he was at his wit’s end, too. I started hunting around the Internet for solutions, considered autoimmune issues, and finally found the Celiac Disease Foundation website.
While Thomas was in class at law school, I checked off a list of symptoms, read stories of confusion and misdiagnoses, and did my own version of the Celiac Disease Foundation’s 7-Day Meal plan. Suddenly, with almost criminal clarity, I knew the answer.
Thomas and I scrubbed gluten from our diets, though I knew it would make celiac disease much harder to diagnose. I was feeling so much better: I was losing all of the inflammation weight, my asthma was disappearing, and my mood stabilized. My anxiety attacks evaporated, and I felt like myself for the first time in three years. My husband held me while I cried from relief. In the course of a month, I felt human again.
When Thomas and I moved up north to New York, I went back to an old nutritionist, and she ordered a battery of blood tests. I suggested that I had been on the Celiac Disease Foundation website, and that a lot of my issues were on the handy checklist used for a preliminary diagnosis to ask your doctor about. I told her I felt much better now that I had cut gluten out of my life. I remember very clearly that she was skeptical since my symptoms hadn’t presented early in my life, but ordered the tests anyway.
She told me that the tests would reveal nothing except genetics, but I wanted proof. My family, despite being health-conscious, was resistant to the idea of celiac disease without hard evidence. The tests showed, ultimately, that I was a heterozygote match for the gene, and my gastroenterologist confirmed diagnosis.
With my Celiac Disease Foundation Symptoms Checklist in hand, I went from nutritionist to gastroenterologist, had blood draws, endoscopies, consultations with PCPs and pulmonologists.
The Celiac Disease Foundation has been a guiding light in my experience with celiac disease, as I know they have been for many other otherwise hopeless patients. In a time in my life that I term as the “pea soup fog period,” the information I found from the Foundation cut through. What could have happened had I not found this organization and their bountiful resources about this disease? For one, I know I would have been hospitalized several more times before I found out the truth. I certainly would not have been as healthy as I am now—and I would not have joined Team Gluten-Free’s efforts to spread the health around.
About a year after my diagnosis, I found myself having profound cravings for beer. My husband, bless his heart, is a strapping, beer-drinking German, and I watched him enjoy Hefeweizens, Oktoberfests, lagers, pumpkin ales, Schwarzbeir; I wanted to cry. So, I resolved to start brewing on my own. After about six months, I thought that I could step it up and actually go into business. Church Owl Beer was born shortly thereafter, and we are now in it for the long haul.
Of course, I had to include the Celiac Disease Foundation in my journey: they had so revolutionized my life that I felt I had to give back, at least in some small way. When I found out about Team Gluten-Free, I went to my friends and Agent Provocateur, and swiftly put together an event that would benefit the Foundation.
The focus was on women with the disease and the symptoms they experience, such as infertility, weight gain, and hormonal imbalances, just to name a few. Thus, the Beers and Blazers event was formed. Partygoers would try on fabulous lingerie-inspired outerwear, sample Church Owl Beer’s autumn brew, and 10% of the proceeds would go to the Foundation.
My experience with Team Gluten-Free was nothing short of phenomenal. Several members of the team reached out and sent wonderful informational placards, banners, and take-home sheets for goodie bags (we supplied shot glasses with Church Owl Beer’s logo, and Agent Provocateur gave their signature keychain). I am so happy to say that the event was a total success, bringing together sufferers and supporters alike for a wonderful cause.
I have come a very long way since I was diagnosed, and even further from the months leading up to diagnosis. Without the support of Celiac Disease Foundation, I would not, really, be who I am now. Further, I would not have found my calling in the beer industry, and I would not have been able to give back to them in turn.