Hello I’m Marilyn Geller. It is my pleasure to welcome you to the nation’s largest patient education conference and Gluten-Free EXPO. Whether this is your first conference or you are a veteran of many years, we are honored to have you attend this premier event of Celiac Disease Foundation.
I would like to thank Alice Bast and Kristen Voorhees of the National Foundation for Celiac Awareness. and Andrea Levario of the American Celiac Disease Alliance, members of the Gluten-Related Disorders Collaborative, who are here today, demonstrating the unity of tomorrow when all celiac groups work together with one unified voice.
As the Chief Executive Officer of Celiac Disease Foundation, I am pleased to share with you the vision of our esteemed Board of Directors.
CELIAC DISEASE FOUNDATON IS the trusted source for information for all people affected by celiac disease and non-celiac gluten sensitivity. We help people learn about, live with, and cope with celiac disease and non-celiac gluten sensitivity.
CELIAC DISEASE FOUNDATION WILL fight nationally and locally through our chapter and support networks to Break Down the Barriers to diagnosis, assuring a safe food and medication supply, finding new treatment and ultimately a cure. We will do this through our programs of advocacy, research and support by:
- Playing a leadership role in setting a national strategy for diagnosis and finding a cure.
- Being recognized by Congress and federal agencies, through our unparalleled Medical Advisory Board, as the leading celiac disease foundation to shape health policy and programs of research
- Being recognized by individuals with celiac disease, families, media, physicians, researchers and funders as the authoritative source for the latest medically sound information about celiac disease
- Having a comprehensive network that effectively delivers programs and services throughout the United States.
- Having a strong national and international brand identity. Celiac Disease Foundation began as one woman’s dream. Today that dream is embraced by millions worldwide and it goes like this:
Imagine the day when celiac disease is universally recognized as one of the most common autoimmune disorders in the world, the disease that is effectively treated without need for severe medical intervention or a socially restrictive diet… Imagine that screening for celiac disease is routine, never questioned by health insurance or physicians, so that not a single person need suffer for years in search of relief. Imagine the day when all foods and medications labeled “gluten-free” meet or exceed the federal standards for gluten-free labeling… and that they are available in every grocery store and pharmacy from big cities to small towns for the same price as their gluten-filled counterparts. Imagine restaurants and food service facilities throughout the U.S., meeting the national standard for the delivery of gluten-free meals. Now imagine the day when anyone with celiac disease contemplating having children can be assured that their children and grandchildren will inherit a world where they never have to face the rigors of a medically required gluten-free diet, because effective treatment and mainstream food products are available.
With your generous support, Celiac Disease Foundation is paving the way for this future through our programs of advocacy, research and patient support. We work ceaselessly towards this level of recognition of celiac disease and non-celiac gluten sensitivity, so that one day soon, diagnosis and treatment will be routine.
As the premier foundation for celiac disease and non-celiac gluten sensitivity education, we work with public policy professionals to promote the labeling of gluten in food products and medications, and programs for testing and early diagnosis. We provide medical and nutritional information approved by our medical advisory board of internationally renowned experts, so that patients and caregivers can clearly distinguish fact from fiction. We support the systematic, thorough scientific investigation of celiac disease and non-celiac gluten sensitivity to understand the exact mechanism behind the disorders. We fund clinical studies to determine the effectiveness of screening programs. And we host the nation’s largest patient education conference each May, this year in Pasadena, California.
Today we strengthen the position of those with celiac disease and non-celiac gluten sensitivity, shaping the growing interest in the gluten-free diet through work with our sponsors to develop new and better products, and with the medical and policy communities and the media to promote our cause. But we will not stop here. Our goal is to continue to improve diagnosis and treatment for all who are at risk for gluten-related disorders, as we achieve worldwide recognition of the medically-required needs of our community.
Being a Celiac Disease Foundation supporter guarantees future generations will have advanced solutions for celiac disease and all gluten-related disorders. We put your donations toward the most effective means of accomplishing these goals. In exchange, we bring you the most trusted information available and offer you a premier opportunity to network with experts and peers.
Celiac Disease Foundation began as one woman’s dream. In 1990, celiac disease was considered a rare disease, with 1 in 250 people estimated to have it. There were NO gluten-free products in main stream grocery stores, and NO ONE had heard of the gluten-free diet.
Today celiac disease is recognized as one of the world’s most common autoimmune disorders, with 1 in 133 estimated to have it, there is a profusion of gluten-free products available, and Celiac Disease Foundation is recognized as the nation’s leading voluntary health organization for celiac disease.
One woman had a dream. Elaine Monarch, please stand and be recognized. It is my honor to carry on Elaine’s torch, and our honor to help you help. Thank you on behalf of the millions of patients and their loved ones that you collectively represent. And thank you for allowing me to share Henry and my story.
It is said that a man is at his tallest when he stoops to help a child. On behalf of the Celiac Disease Foundation (CDF) and the community we serve, thank you for the generous response to our Gift of Hope campaign. CDF is proud of our commitment to educate and communicate a greater awareness of celiac disease and non-celiac gluten sensitivity, and to advocate for early diagnosis. We greatly appreciate that so many of you have been moved to share your story of difficult diagnosis, inspiration and hope.
A very special thank you to Quest Diagnostics (film clip coming soon) and the cast and crew of Hallmark Channel’s Home and Family show Watch Here for their Gift of Hope in promoting celiac disease awareness and the need for early testing, and to Delight Gluten-Free magazine for their generous donation of a complimentary annual subscription for each of our Friend donors.
This month we open registration for two very important programs. The first is the CDF National Education Conference and Gluten-Free EXPO to be held May 4th and 5th at the Pasadena Convention Center in Pasadena, California. On Saturday, May 4th, Joseph Murray, MD, medical director of the Mayo Celiac Disease Clinic and world expert in celiac disease and non-celiac gluten sensitivity, delivers the keynote address discussing the latest developments in research and diagnosis. The “Breaking Therapies in Celiac Disease” panel with medical experts from Alba, Alvine, BioLineRx and ImmusanT will discuss the race to a cure. Trisha Thompson, MS, RD, known as the “Gluten-Free Dietician”, will present “Innovations in the Gluten-Free diet”, moderating a panel of top industry dieticians including General Mills, Frito Lay, Trader Joe’s and Anne Lee from Dr. Schar. Each session will include ample time for audience questions and answers. Attendees on May 4th will be treated to the world debut of three “Oh My!” gluten-free products from one of CDF’s sponsors, as well as gain exclusive access to the Gluten-Free EXPO with more than 75 exhibitors sampling goods and services for the gluten-free lifestyle. Join us in the Gluten-Free Beer Garden, feast to your heart’s content, network with other patients and family members, and go home with a goodie bag stuffed to the brim with samples and coupons of gluten-free goodness. Attendees may also choose to indulge in a GF Pancake and Sausage breakfast, and break GF bread at lunch and dinner with others who can’t wait to swap stories about adventures in dining out.
On Sunday, May 5th, CDF opens the Gluten-Free EXPO to the public (Saturday attendees get in free on Sunday!) with celebrity appearances, live music, cooking demonstrations, and endless sampling. Join CDF as we introduce the larger community to what it really means to be gluten-free!
Click Here to register for the National Education Conference and/or Gluten-Free Expo
Our second program is CDF Camp Gluten-Free™, a weeklong strictly gluten-free sleepaway camp for children (campers) and young adults (Mentors) with celiac disease or non-celiac gluten sensitivity. Held July 15th - 19th for campers and July 13th - 19th for Mentors, at Camp Fire Camp Nawakwa in the gorgeous San Bernardino Mountains, activities include swimming, hiking, cooking outdoors, canoeing, arts and crafts, singing, drama, games, nature walks, archery, rock wall climbing, making new friends and thriving in a supportive, gluten-free environment.
CDF Camp Gluten-Free™ is able to offer reduced camp fees and provide camperships for children in need through the generous, tax-deductible support of individuals, foundations and corporations. Should you feel like being your tallest today, click here to register your child or grandchild or click here to donate.
To Your Health,
It is said... Once you choose hope, anything is possible.
"Celiac. Diagnosed May 2008."
Dear CDF Supporters,
I cried when I read this banner on my son Henry’s Facebook page. After 14 long years of excruciating stomachaches, endless doctor visits, tests, procedures, more tests and even hospitalizations... my son had a diagnosis. He was relieved -- and proud. I cried tears of joy.
Henry had just returned from a week at a celiac sleep away camp where he volunteered as a junior counselor. He had been diagnosed with the disease some months earlier, but was understandably angry and frustrated. Earlier that year we met an amazing woman, Ms. Elaine Monarch, the Founder of Celiac Disease Foundation (CDF). Elaine told us that while Henry’s adherence to a strictly gluten-free diet to avoid the disease symptoms was non-negotiable, the choice to live his life positively with the disease was his alone. It was a simple, entirely truthful fact. In fact, it was Elaine who recommended that Henry volunteer to work at the camp. There, so moved and so touched by the dozens of other children coping with their disease in a positive way, he understood his path. When he came home, he put this post on his Facebook page.
Earlier that year we attended our first CDF National Education Conference, where hundreds of CDF supporters dove into stacks of Bisquick® GlutenFree pancakes, proudly debuted by General Mills, one of CDF’s most ardent corporate sponsors . Henry was so happy that he joined the teen panel. Under Elaine's guidance, Henry interned at the CDF National office, joined CDF Team Gluten-Free™ to fundraise, and gave television and newspaper interviews to promote celiac disease education.
Their message was resolute: the veil of ignorance must be lifted. This needless suffering of children must stop. No child with this manageable disease should ever go undiagnosed.
Looking back now, I must say we had certainly come a long way from that freshman year in high school when he missed nearly one-third of the school year for celiac-related symptoms.
For our family, it was a happy ending. Except... it turned out it wasn't really the end.
In March of this year, Elaine asked me to take the position of Chief Operating Officer of the Celiac Disease Foundation. I am deeply proud that, with the help of generous volunteers and donors like you, I now promote CDF's positive message of taking charge of your life, embracing your community, and paying it forward.
Today, I am writing to ask for your help as we at CDF prepare to enter a new year. I am hoping that I can count on you to renew your commitment to the Celiac Disease Foundation with a generous, tax-deductible contribution of $50 or more to support the breadth of our work in the coming year. This year, your annual contribution gift will be recognized as statement of appreciation for and celebration of the incredible vision and service of our Founder and now lifetime board member, Elaine Monarch.
Elaine is a hero to me and to thousands of parents and their children worldwide. In 1990, she was courageous enough to challenge the absurd notion in the medical and disease community that celiac disease was a rare and insignificant disease. Thanks to Elaine and her “kitchen cabinet” of a dozen like-minded individuals who came together and started the Celiac Disease Foundation, today CDF is recognized as a worldwide resource for the most current information on celiac disease and the gluten-free lifestyle. More important, celiac disease is now recognized as the most prevalent auto-immune condition in the world.
CDF is proud of our more than two decades of service and commitment to the celiac and gluten-sensitive community. As we reflect on some of this year’s achievements, we acknowledge with gratitude each of you who support our goals and mission and help us accomplish so much.
Through your generous support in 2012 CDF...
- Promoted and collaborated with congressional representatives on legislation requiring the labeling of gluten in medications.
- Partnered with Los Angeles County Department of Health Services and UCLA Medical Center to support a Celiac Disease Fellow who will study the effects of screening for celiac disease in the low-income population.
- Partnered with corporations, including General Mills, The Clorox Company, Frito-Lay and Blue Diamond Growers for gluten-free initiatives that significantly enhance the quality of life for those with celiac disease and non-celiac gluten sensitivity.
- Launched CDF Camp Gluten-Free at Camp Nawakwa, a weeklong sleep-away camp.
- Served more than a million visitors through our website www.celiac.org and social media programs, which provide up-to-the-minute information about celiac disease and non-celiac gluten sensitivity research and the gluten-free lifestyle.
- Managed a nationwide network of over 139 Chapters and Connections in over 41 states that generate awareness, provide outreach and localized support.
- And...hosted the largest patient support and educational conference in the U.S. – expanding to a three-day conference and Expo in 2013.
CDF has had a positive impact in the lives of thousands of individuals with celiac disease and their families. BUT there is STILL so much more to be done.
The latest research finds that more than 3 million Americans have celiac disease. Yet only 1 in 6 is diagnosed. We need YOUR support so that we can reach the 2.5 million people with the disease but are not yet diagnosed. We need to reach out and educate doctors, the media, schools, and especially mothers, fathers and children. Only then can we help end the needless suffering.
CDF will continue to develop partnerships and collaborations in support of our goal to promote education and research for celiac disease. We must increase the rate of diagnosis. And we must shorten the time between the onset of symptoms and diagnosis. For more information on all our CDF programs, we invite you to explore this website.
Our holiday wish is that you will feel inspired to share in our mission! Help us honor Elaine's decades of service in a manner I know she will appreciate... empowering us to empower families to stop the suffering of children.
I encourage you to advocate for celiac disease education, research and support of families and loved ones by embracing Celiac Disease Foundation.
To Your Health,
P.S. We want to thank you for honoring and celebrating Elaine with a year end gift. Give $100 or more and you will receive a complimentary year-long subscription to Delight Gluten-Free Magazine. Give $500 or more and receive an invitation for you and a guest to attend the CDF VIP Reception.
It is said that a journey of a thousand miles starts with a single step. This past weekend the executive teams of the nation’s leading celiac disease and non-celiac gluten sensitivity organizations (CDF, CSA, GIG, NFCA, ACDA) met in Chicago to define a collaborative effort to support our shared missions of education, awareness and advocacy. Collaborative members met with Dr. Stefano Guandalini and Carol Shilson of the University of Chicago Celiac Disease Center, host of the 2013 International Celiac Disease Symposium (ICDS), to discuss support organization participation. Dr. Guandalini also spoke of the mission of the recently formed North American Society for the Study of Celiac Disease (NASSCD) to raise funds to support fellowships in celiac disease. The NASSCD seeks to recruit young investigators in celiac disease and non-celiac gluten sensitivity to augment its maturing physician base.
Understanding that there is strength in unity, Collaborative members began preparing for this momentous meeting with twice monthly phone calls and the engagement of Executive Service Corps (ESC) Chicago to provide strategic planning support. Under the guidance of ESC Chicago, Collaborative members created a strategic plan with a draft mission to jointly support efforts that advance the interests of those with gluten-related disorders. The draft vision is to be recognized as the principal resource for the gluten-related disorders community. Goals include a unified presence at the (ICDS) with jointly-sponsored events, distribution of uniform literature regarding dietary and gluten-free lifestyle guidelines, and development of a fundraising program to support fellowships. Collaborative members will continue to meet twice monthly, and in person at the beginning of 2013 and at the September 2013 ICDS.
Our journey of a thousand miles has begun. Whether you are a current member or wish to become one, we need your support. Become a part of this growing collaboration to unite the celiac community. Help us be a stronger force than ever to make life better for those with celiac disease, non-celiac gluten sensitivity and those that still need to be diagnosed. Are You The One to take that single step? We want to hear what you think - please write and let me know.
To Your Health,
It is said that a helping hand is no farther than at the end of your sleeve. For our five ING New York Marathon CDF Team Gluten-Free™ members, their helping feet are no farther than at the end of their running pants. Ashley Herriman, Tinsley Malloy, Josh Schieffer, Kim Woody and Kelly Williamson have committed to raising awareness for celiac disease and gluten sensitivity by proudly running 26 miles in our distinctive, CDF Team Gluten-Free™ signature shirt – showing the world that with diagnosis and the proper diet, celiacs can do ANYTHING. By Marathon rules, each runner must commit to raising a minimum of $2,500 for Celiac Disease Foundation by November 4, 2012.
ALERT: Our runners need your help! Only one of our runners, Kelly Williamson, has met the minimum fundraising requirement. This is where each and every one of us can make a difference. Your donation will allow children with celiac disease and gluten sensitivity to have the life-changing experience of a week at a gluten-free summer camp – eating childhood favorites without worry of becoming ill or feeling different. It will allow for no-cost screening programs so that we change the current statistic that for every one person diagnosed, 89 still are not. And it will allow our CDF Team Gluten-Free™ members to run with the pride of being championed by a compassionate and loyal community.
We, the celiac and gluten-sensitive community, have an opportunity to support our tremendously dedicated marathoners. And to win an iPhone5. Donate at least $11 and you will be entered to win an iPhone5 from Crowdrise. Then, click the ‘Ask for Donations’ button and get your friends and family to donate to you too and they’ll also be signed up to win.
Celiac Disease Foundation provides you with the opportunity to do great things. Are You the One to lend a helping hand? We hope you will…Write me and let me know why you donated. We will let our community know the responses.
Click here for contest rules
September 24, 2012
Dear Members: It is now five months since Deborah Ceizler and I accepted the Board of Directors' request to join together to lead Celiac Disease Foundation. It has been an inspiring and exciting time, and we thank all of you for your enthusiastic support. We are eager to share some of the steps we have taken to strengthen CDF's infrastructure and to increase CDF's ability to promote awareness of celiac disease and gluten sensitivity.
- Expanded Policy Work: CDF installed eight new members to our Board of Directors and established the Executive, Finance and Media-PR Committees and Board Development, Membership and Development Plan Task Groups, each chaired by a Board Member. To assure effective planning for our future, CDF has partnered with the Executive Service Corps of Southern California (ESC) for a year-long project to guide our 18-member Board of Directors in the areas of Board Development and Strategic Planning. Get to know your CDF Board of Directors at tinyurl.com/9tp93ak
- Chapters and Connections: Chapter and Connections Leaders continued to meet quarterly, this month via video chat. The Leaders had a chance to review the proposed Chapter and Connections pages, launching with the new CDF website in early 2013. Several Chapters volunteered to be "early adopters" and go-live when the website debuts. Leaders also reviewed opportunities to fundraise with the goal of sending at least two members from each Chapter and Connections group to the CDF National Education Conference taking place in May, 2013 in the Greater Los Angeles area. View the Leadership at tinyurl.com/8utovkr
- CDF National Education Conference and Gluten-Free Expo: May 3-5, 2013 CDF will host a three-day event at the Pasadena Convention Center, not far from the famous Rose Bowl. Friday morning, May 3rd the Board of Directors will meet, followed by a luncheon with Board members and Chapters and Connections Leaders. Friday afternoon will be a training session for the Leadership. The VIP Reception, where $500+ donors meet Medical Advisory Board and Board of Directors members, Chapter Leaders, Sponsors and other honored guests, will be held Friday evening. The Education Conference will be held Saturday, May 4th, with an exclusive viewing for all attendees of the Gluten-Free Expo. Sunday, May 5th, the Gluten-Free EXPO will be open to the public with participation from related auto-immune non-profit organizations.
- Expanded member benefits: Under the guidance of the Membership Task Group, CDF will be reaching out to you to determine what member benefits matter most. Some of the proposals include: a Bylaws revision that allows members to participate on Committees and Task Groups, exclusive access to events at the National Education Conference including attending the Board of Directors Meeting and Luncheon, and a Members-Only area for the new website.
- Social Media: CDF's five summer interns launched the Young and Gluten Free campaign (youngandglutenfree.com) with tongue-in-cheek videos and an evidence-based blog, addressing the questions of the 18 to 35 year old crowd. Through this campaign and all our social media efforts, CDF's Facebook "reach" increased to 25,000, with the website receiving 80,000 "hits" per month. After considerable due diligence, CDF has selected a website development team and a software system with the goal of doubling our current awareness efforts over the next three years.
- CDF Camp Gluten-Free: This summer, CDF launched Southern California's first gluten-free sleep away camp in partnership with Camp Nawakwa CampFire USA. It was the culmination of a long-term goal with many dedicated individuals playing a part and your membership/donor dollars playing a starring role. CDF was able to secure a grant for videography services so that you may experience first-hand the success of the camp through the eyes of the children. Please know that a donation of $400 allows CDF to send a child to camp in 2013. The greater your donation, the greater the number of children across the country who may benefit from this life changing opportunity. Go to tinyurl.com/7klzbq9 to view the camp video.
Finally, I am pleased to report the following: (1) I was accepted into the Wells Fargo New Executive Directors' Leadership Institute, a year-long training program to increase CDF's ability to effectively carry out our mission, (2) the Celiac Collaborative is continuing to meet twice monthly with our face-to-face meeting planned for October in Chicago to discuss the feasibility of becoming a Coalition and (3) Frito-Lay released its YouTube video "Celiac Disease and Gluten Free Living with Frito-Lay and the Celiac Disease Foundation" - tinyurl.com/9yjavjg
To Your Health,
August 20, 2012
They say that imitation is the sincerest form of flattery. This summer Celiac Disease Foundation launched Camp Gluten-Free at Camp Nawakwa CampFireUSA in southern California. Fifty children attended a delicious and activity-packed week under the supervision of Elaine Monarch, CDF Founder, and Pamela Rowe, CDF Board Secretary. A highlight of the week was the Make Your Own GF Pizza night sponsored by Red Brick Pizza where each camper was able to construct the pizza of their dreams. James Panagoti and Michael Bitoloa, sons of CDF Board member Jim Minidis, brought more than 20 toppings, including vegan cheese, and with the assistance of CDF Board Member Chad Hines and his wife Jessie, cooked the pizzas to perfection in the camp ovens. Dinner was followed by a Q&A session with Chad, recently named one of 40 under 40 to watch in our Celiac world. Chad spoke of his own diagnosis at the age of seven, with the campers eagerly taking a turn at the microphone to share their own stories. Counselors and staff held back tears as child after child spoke of how sick they had been prior to diagnosis, and how happy they were to be part of our camp experience…and eating such amazing pizza and bread!
According to Pediatrics, campers with celiac disease who attended a gluten-free camp demonstrated improvement in well-being, self-perception, and emotional outlook, especially those who had been on a gluten-free diet less than four years.
As I mentioned in my first blog, attending a gluten-free sleep away camp changed my son's attitude towards celiac disease and provided him with the tools and the community he needed to navigate the gluten-free lifestyle. Having now witnessed firsthand what happens at such a camp, I cannot speak more highly of the experience. I urge you to send your child, grandchild, niece, nephew or family friend to CDF Camp Gluten-Free 2013 camp or to a gluten-free camp near you. A donation of $400 allows CDF to send a needy child to camp in southern California. The greater your donation, the greater the number of children across the country who may benefit from this life changing opportunity. Need more convincing? Click Here
A personal thanks to the Taylor Family Foundation's Camp Celiac, and to all the other GF sleep away camps that we have imitated. We commend you for the work that you do, and are proud to follow in your footsteps.
To Your Health,
July 25, 2012
They say man cannot live by bread alone. Don't I know it. I love my snack food. Give me a tunafish sandwich (lite mayo, pickle relish, celery, lettuce and tomato) with Baked Lays between two slices of (GF) bread and I am in heaven. Without the Baked Lays, I'll pass.
Celiac Disease Foundation (CDF) understands your need for variety and for clear labeling of your gluten-free food products. One important element of our mission is to effect change within the food industry. In keeping with this, CDF has partnered with Frito-Lay to educate consumers and health professionals about gluten-free resources and options. With input from CDF, Frito-Lay has voluntarily undertaken testing of many of their snack ingredients and products to ensure that they adhere to the proposed FDA standards for gluten-free labeling of less than 20 parts per million of gluten. Frito-Lay now labels many of products with its own GF symbol so you can enjoy your snack foods with the peace of mind that they are gluten-free and that a major food company cares about your dietary needs. In addition, Frito-Lay has produced a webinar about what CDF and Frito-Lay have to offer the gluten-free consumer, starring...me. Click Here to watch.
You know that you can find the Celiac Disease Foundation logo on many of our sponsors' products, including General Mills GF Chex, Betty Crocker GF baking mixes, Bisquick GF mix, Nature's Valley, Blue Diamond, Kedem and Jones Dairy Farm products. CDF values our sponsors and their commitment to educate, communicate and advocate for a greater awareness of celiac disease and non-celiac gluten sensitivity.
If you know of a company that can independently validate their continuous GF testing to meet the proposed FDA standards for gluten-free labeling, please introduce them to us! Partnerships with gluten-free food manufacturers support our mission of improving your quality of life.
To Your Health,
July 10, 2012
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?
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