Note from Alice: Voices of Celiac Disease
Last month, Beyond Celiac launched a new initiative, Voices of Celiac Disease, to collect diverse stories of diagnosis and living with this serious genetic autoimmune disorder. When the communications team first posted the call for stories, we weren’t sure what to expect—how many of you would come forward to share your journeys and what they would reveal. Incredibly, we received an overwhelming response with a multitude of stories. And what we found out was that the collective voice of celiac disease needs to be heard.
While we have already been collecting patient-reported data for research in our database, Go Beyond Celiac, for several years now, we also wanted to hear your stories told in your own voice. What are the struggles they faced with diagnosis and living with celiac disease? Go Beyond Celiac data can be used by scientists and doctors to better understand and research this disease, but we believe that sharing The Voices of Celiac Disease will help increase awareness of its chameleon nature and help improve diagnosis rates.
We’ve been posting snippets of some of the stories as they come into our social media pages, and today are proud to announce the unveiling of a new landing page to collect and share these stories long-term. So far we’ve been blown away by just how unique yet similar your stories are.
A common theme we’re finding is doctors not listening to their patients, like Christine who suffered for 47 years with anemia, infertility issues, rashes and more before finally being diagnosed with celiac disease. Many suffering are also being told their symptoms are just “in their head,” like Gabrielle, who was put on anti-anxiety medication instead of being tested. Others are not having their symptoms connected to celiac disease, like young Noah whose mother felt she was being “brushed off” by his pediatrician despite him not putting on weight and multiple ER visits for gastrointestinal issues. He was diagnosed only after his mother found out about celiac disease and requested the blood test.
Some of your stories highlight that some doctors don’t believe that certain people—due to their race, ethnicity, age or gender—can even have celiac disease. This happened to Jocelyn, who was outright told that celiac disease isn’t prevalent in people of color, therefore no need to test. Thanks to her persistence in fighting for her own health, Jocelyn sought another doctor, “with the cultural competency to understand that race does not define your health,” and was ultimately diagnosed with celiac disease.
These are serious issues that need to be addressed. We hope that by collecting both personal stories and research data and sharing them with the medical community and general public that we can make strides in diagnosis—across communities, no matter a person’s race, ethnicity, gender or symptoms.
Help us help others by sharing your stories today at https://www.beyondceliac.org/tell-your-story.
Together for a cure,
Beyond Celiac Partners with Janssen to Support Critical Research
Beyond Celiac is proud to announce a two-year joint research grant program with Janssen Research & Development, LLC (Janssen) through its World Without Disease Accelerator group. Through a commitment of up to $1 million in funds and services, Beyond Celiac and Janssen will co-fund research focusing on risk detection, prevention, interception and cure of celiac disease. Emphasis will be placed on gaining an increased understanding of areas such as the gut microbiome, induction of immune tolerance and biomarkers of risk and progression.
Learn more
Meet the 2021 Beyond Celiac Ambassadors
The Reach Beyond Celiac Ambassador Program will empower the celiac community by providing outlets to share their experiences, spread positivity and create change in their communities.
Meet our 2021 Ambassadors
Beyond Celiac Town Halls
Beyond Celiac is pleased to present our 2021 Virtual Town Hall Series. Throughout the year we will be hosting in-depth conversations with top experts in the field of celiac disease—including clinicians, scientists and advocates—as we aim to answer big questions about this serious autoimmune disease.
Join us this month for our first Town Hall:
- A Conversation with CHOP Celiac Center — A Holistic Approach to Pediatric Celiac Disease Management | March 24, 2021, at 12 PM ET
Register for Free
Register Step Beyond Celiac 2021
We have our sights set on a cure for celiac disease and every step you take helps get us closer to our goal. Proceeds raised from our Step Beyond Celiac 5Ks support our work to accelerate treatments and a cure for celiac disease. Until we reach the ultimate finish line – a cure for celiac disease – we’ll be putting our energy into helping people with celiac disease live better, longer. The Virtual Step Beyond Celiac 5K is a family-friendly fundraiser for Beyond Celiac. We encourage all participants to raise funds while running or walking 3.1 miles right where you are in support of research efforts for treatments and a cure. Lace-up your running shoes with us this May for Celiac Awareness Month! All participants receive a Step Beyond Celiac 5K shirt and bib if they register before the t-shirt deadline.
Register Now!
Gluten-Free Cooking with Chef Oonagh Williams
15-Bean Sausage Soup
With the bitter cold throughout the country, a hot warming soup, full of protein is a very sensible idea.
Irish Cream Tiramisu Cupcakes
A delicious gluten-free treat made with Irish Cream liqueur and tinted green for St. Patrick’s Day.
About Chef Oonagh Williams
Oonagh Williams holds a culinary arts degree and spends her time cooking and educating the public on gluten- and allergy-free diets. She herself has celiac disease and food allergies. She teaches cooking classes, hosts dinner parties, and offers one-on-one help. Buy her Delicious Gluten-Free Cooking e-book and connect with her on Facebook.
Research News
COVID-19 Risks Not Increased for Those with Celiac Disease
People with celiac disease don’t have an increased risk of developing severe COVID-19, a new study has found. Celiac disease did not increase someone’s risk for hospitalization, admission to intensive care or death attributed to COVID-19, researchers from the United States and Sweden concluded when they looked at a group of nearly 41,000 Swedish people with celiac disease and compared them to controls.
ACeD Study Safety: Gluten Challenge and COVID-19
Kanyos Bio, Inc (a wholly-owned subsidiary of Anokion SA) launched their Phase 1 trial of KAN-101 in early 2020. The ACeD Study (Assessment of KAN-101 in Celiac Disease) has two parts, both evaluating the safety and tolerability of KAN-101, a treatment designed to modify the body’s immune response to gluten. In the first part, participants received one dose of KAN-101 and then were monitored. The second part of the trial launched last month.
The Gluten-free Diet May Not Be Enough in Some Celiac Disease Patients Who Seem Well
People with celiac disease who seem to be doing well on a gluten-free diet may have on-going, low-level intestinal inflammation, according to a new study that looked at complete protein profiles in biopsy samples.
Read more research news on our Research News Feed
Clinical Trials
CeDLara Study
Still experiencing symptoms on a gluten-free diet? The CeDLara Study is currently enrolling qualified patients into their phase 3 study to assess a potential therapy for celiac disease. This study is being conducted to determine if the drug reduces symptoms of celiac disease in patients who are on a gluten-free diet. You may qualify to participate in this study if you:
- Are 18 years old or older
- Are biopsy diagnosed with celiac disease
- Are actively experiencing symptoms related to celiac disease such as abdominal pain, abdominal cramping, bloating or gas
- Have been on a gluten-free diet for at least 6 months
Learn More
PROACTIVE Study
Are you still experiencing celiac disease symptoms despite your best efforts to follow a gluten-free diet?
The PROACTIVE Celiac Study is looking for people between the ages of 18 and 70, who have biopsy-confirmed celiac disease and have been on a gluten-free diet for at least the last 12 months. You will not be asked to ingest gluten in this study. The goal of this phase 2 clinical trial is to test the safety and effects of the investigational medication PRV-015. In combination with a gluten-free diet, PRV-015 aims to reduce symptoms and intestinal inflammation caused by accidental gluten exposure.
Learn More
See if You Qualify
Use referral code: REFBC
Solutions for Celiac Study
The Solutions for Celiac study is researching a drink-based study medication and its ability to reduce symptoms of accidental gluten exposure. Latiglutenase is a study medication designed to break down gluten into inactive pieces in the stomach to protect people with celiac disease. No uncomfortable biopsies or injections.
Locations: Chattanooga, TN | New York, NY | Chesterfield, MI | Rochester, MN
Learn More
Allergic Living Spotlight
When Food at the Grocery Store Isn’t Labeled for Top Allergens
People with food allergies depend on the ingredient labels of grocery products for accurate and complete information as part of their allergen avoidance strategies. But there are gaps in the rules and regulations pertaining to labeling of foods, and shoppers are often surprised to learn that they don’t apply to all items sold within a grocery store.
News, Events & Updates
Raise Money for Beyond Celiac on Facebook!
Happy birth-month to all our March-born community members! When your big day rolls around, consider “donating” it to Beyond Celiac so that we can help fund new research scientists in the celiac disease field. And a HUGE thank you to everyone who’s created fundraisers for us throughout the years!
CHOP Celiac Education Day
The Center for Celiac Disease at Children’s Hospital of Philadelphia (CHOP) strives each year to provide children and caregivers with Celiac Disease a one day, state of the art multidisciplinary education program. We are happy to announce that our 16th annual event will take place virtually on Sunday, March 7, 2021 at 9:00 am.
