They say that every picture tells a story. This is the story of how a red-headed woman with an indomitable spirit turned our family into passionate Celiac Disease Foundation supporters. It is 2010, two years after my son Henry was diagnosed with celiac disease. In this picture he is smiling, healthy and giving back to the community which embraced him. The red-headed woman is Elaine Monarch, founder of the Celiac Disease Foundation, and champion of all celiacs, everywhere. I am the one in the CDF Team Gluten-Free hat and shirt, astounded that I am at the Pasadena Marathon at the crack of dawn, but thrilled that Henry has taken it upon himself to fundraise for celiac camperships.
Henry had celiac symptoms from birth: projectile vomiting, horrible eczema, slept only 45 minutes at a stretch. I could not nurse fast enough or long enough. The pediatrician put him on formula, then on hypoallergenic formula mixed with rice to thicken it, then with oatmeal to thicken it more, to keep it down. So yes, my child was an early gluten ingester. As a toddler and until the age of 14, he suffered from terrible stomachaches, some of which put him in the hospital, as well as chronic sinusitis. He saw pediatricians, allergists, otolaryngologists and yes, a gastroenterologist, all without relief from his symptoms. In ninth grade, he missed more than a third of the school year because he could not get out of bed. He was told by his pediatrician and the gastroenterologist that there was nothing wrong with him. He was told by the otolaryngologist that he should “suck it up” because there were patients who were really sick, and that his stomachaches were psychosomatic. This was my lowest moment as a mother. I knew deep down that there was something seriously wrong with my child, but I did not defend him against this doctor’s verbal abuse. Because…he was the expert. Not once did anyone suggest testing for celiac disease.
Henry was diagnosed by accident. And by mother’s intuition. Not because I have a Master’s of Science in Public Health and was a hospital administrator for ten years. Not because my husband is an endocrinologist. And not because a single physician thought to test him for it. At 14, Henry considered having sinus surgery at the otolaryngologist’s suggestion that it was the post-nasal drip that was causing his terrible stomachaches. Not convinced that sinus surgery was the answer, I told the pediatrician to order “everything” that had not previously been ordered, whether or not the tests were covered by insurance. Of the $3,000 in tests, it was the simple $29 blood test that led us to a diagnosis. A test that should have been ordered years before.
I received a call from the pediatrician who informed me that Henry had celiac disease (seal-i-ac?) and that his antibodies were “off the chart” and that he should go on a gluten-free diet (Glue-10?). Because his test was so very positive, the pediatrician advised there was really no need to have a biopsy. It was Henry who insisted on the biopsy. His reaction: “If you are going to tell me that I may never eat my favorite things again like burritos, pasta, and pizza, then I am absolutely having a biopsy to confirm that I have this.” He had the biopsy two days later, which turned out to be a very minor and simple procedure. VERY IMPORTANT POINT HERE: I would have listened to the pediatrician and not had him biopsied. Henry would not have known if he had celiac disease. Not really knowing means he could have convinced himself he could eat gluten on occasion and it would not hurt his gut. In fact, the gastroenterologist who performed the biopsy told him that he would be able to eat some gluten once his gut healed. (In fact, he now sneaks soy sauce, so feel free to Facebook him and call him out.)
At that point I educated myself. I went online, bought books, read endless labels and learned to cook gluten-free. I learned the dangers of self-diagnosis, of going gluten-free without a biopsy, and that we were far from alone in the misinformation we received. I also learned how expensive it can be to eat gluten-free. For Henry it was a tougher transition. While he did begin to feel a little better, the lack of gluten-free options and awareness at that time was very difficult for a teenage boy. He was angry. Very angry. And still sick from the endless bouts of gluten cross-contamination from dining out, going to camp and traveling – from trying to live a normal life. Our world changed for the better the day a friend suggested we talk to Elaine Monarch, Founder of the Celiac Disease Foundation.
Elaine met Henry at the Celiac Disease Foundation office. She matter-of-factly told him that he now led a gluten-free lifestyle. This was non-negotiable. But that he had a choice to make: he could choose to live positively or negatively. Living positively meant taking responsibility for his food choices, becoming a member of the celiac community, and most importantly, giving back so that no child would have to endure his years of misdiagnosis. Henry attended Camp Celiac, sponsored by the Taylor Family Foundation and supported by the Celiac Disease Foundation, in the summer of 2009. He came back an advocate for celiac awareness. And happy. I cried the day he changed his Facebook page “About” section to “Celiac diagnosed May 2008.”
From then on, with Elaine by our side, Henry and I became a team. He joined CDF Team Gluten-Free™ to raise money for other celiacs to attend gluten-free camp and I gave him my address book. I joined the CDF Board of Directors and he took on the role of CDF’s Teen Volunteer Coordinator. Under Elaine Monarch’s guidance, he hosted the teen panels at CDF’s Annual Education Conference, gave interviews to newspapers and TV stations, spoke at Columbia’s Celiac Disease Conference, spent summers interning at the CDF office and as a Camp Celiac counselor; my job was to make sure he had enough gluten-free food to keep him going. Gaining 8 inches and 40 pounds by his junior year, Henry was strong enough to join the football team – a lifelong dream of his. He played JV, and Varsity his senior year. He also played on the Varsity tennis team both years, winning back-to-back team CIF titles. Last fall he entered UC Berkeley where he has found his own gluten-free community.
It is a happy ending. Except that it is not the end. In March of this year, Elaine Monarch asked me if I would consider taking the position of Chief Operating Officer of the Celiac Disease Foundation, with Deborah Ceizler as the Chief Development Officer. It is an immense honor to be given the chance to help on a level that can truly make a difference in people’s lives. I am deeply proud that I now promote CDF’s positive message of taking charge of your life, embracing your community, and giving back.
Deborah, the staff, and I are dreaming big for the future of the Celiac Disease Foundation. With your support we look forward to:
- Celiac Collaborative: CDF extended an invitation to North America’s leading celiac disease and gluten sensitivity organizations, including ACDA, ASA, CCA, CSA, GIG and NFCA, to participate in a collaborative effort to promote awareness. The Collaborative now meets twice monthly via teleconference to exchange information and ideas, with a face-to-face summit scheduled this October in Chicago to plan for the 15th International Coeliac Disease Symposium.
- Expanding policy work: We will be forming a policy agenda that champions not only celiac disease, but all gluten-related disorders. We will be finding ways to work on both the national and local levels by facilitating the relationships between policymakers, the media, industry and our medical communities. To support this effort, we have have added nine new members to our Board of Directors, all experts in this area.
- Chapter and Connections Leadership: Each Chapter and Connections group will be offered the opportunity to have their own CDF-sponsored website and email account, and to fundraise through Gluten-Free Resource Directory advertising efforts. CDF will be taking its Leadership meetings on the road so that all leaders will be able to benefit from networking and thoughtful discussion. Look for Chapter expansion and Connections groups stepping up to be come Chapters.
- Education Conferences, Grand Rounds and Gluten-Free Expos: Under the emerging vision of our Medical Advisory Board, CDF will be partnering with its Chapters to promote regional educational conferences hosting world class speakers, grand rounds for the local medical community, and gluten-free expos debuting the latest and best products and services.
- Expanded member benefits: In addition to the satisfaction of contributing to celiac disease awareness and sharing in our mission of finding the undiagnosed population, we want to know what additional member benefits are important to you. Look for member surveys and focus group opportunities this coming year.
- Social Media: To keep up with the increasing rate of diagnosis and demand for information about celiac disease and gluten sensitivity, CDF will be unveiling a new, easily navigable website with up-to-the-minute research, and national and local events and meetings. Chapters and Connections groups will each have their own webpage, linked to social media, so you can readily find the information most important to you.
So you now know my story. It is your turn to tell yours. How did you find Celiac Disease Foundation? How are you giving back? How can we help you?
We will be featuring “Spotlight” stories on the www.celiac.org website. If you’d like to see your story on the web, please email me at [email protected] or find me on Facebook at facebook.com/marilyn.geller and Twitter at @COOatCDF.
Together, we will continue to make a positive difference in the lives of those with celiac disease and non-celiac gluten sensitivity, through advocacy, education and personal support. I thank you for your commitment to the Celiac Disease Foundation and look forward to hearing from you!
To Your Health,
Marilyn G. Geller, MSPH
Chief Operating Officer