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Note from Alice: Why We 💚 Research
When we thought the gluten-free diet was all that people with celiac disease needed, the picture of the disease was out of focus. And scientists did not want to study a disease when they did not think there was a need.
Now evidence proves that was wrong. Celiac disease is a serious disease with serious needs for treatments and a cure. People, even those who are follow the diet very strictly, have been feeling sick and fatigued and limiting their social life and choices and thinking that’s normal. It’s not normal and the urgency is, our community deserves to feel good, to be healthy and live an unrestricted life. I for one am sick of hearing from all of you that you are a little bit sick all the time. It’s not too much to ask that people with celiac disease be able to wake up every day feeling well, energetic and open to all life’s possibilities.
Clinical trial evidence is increasingly showing that even those who follow the gluten-free diet strictly are exposed to some gluten from cross-contact and other inadvertent sources.
The Doggie Bag study is most recent research to come to this conclusion. Researchers had participants in the study provide samples of food and urine and stool to determine how much gluten they were getting in their diets even though they were trying very hard to be gluten free. And it turned out many still had gluten in their diets.
Other studies have come to similar conclusions based on the fact that patients continue to have symptoms and intestinal damage.
As Beyond Celiac has seen the evidence building that the gluten-free diet is not enough, we have made it our mission to find new treatments and a cure. The urgency is that patients should be able to be symptom and damage free and live life to the fullest. Additionally, a new treatment could improve quality of life because it would make it possible for celiac disease patients to eat away from home with less worry about gluten contamination.
No one is going to study or come up with a treatment for a disease when they don’t think there is a need. For a long time that was the thinking about celiac disease. But we now know it’s not true, so scientists and drug companies are interested in better understanding and new treatments. The gluten-free diet can only do so much and for many people, it’s not nearly enough.
We invite you to be one of the many people in our community who are stepping up to change the future of celiac disease. This month, all donations are being matched by a generous $20,000 contribution. Your gift matters. It gets us that much closer to a world Beyond Celiac.
Together for a cure,
Alice Bast
The idea for these lemon snowballs actually came from a Lithuanian recipe. They were originally made with wheat, and I made them gluten-free. These are delicious, fun and easy to make!
About Chef Oonagh Williams
Chef 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 often 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.
Beyond Celiac Ambassador Instagram Takeover!
Arturo Chacón-Cruz, renowned opera star and Beyond Celiac ambassador, will be “taking over” the Beyond Celiac Instagram page tomorrow (Friday, February 7) starting around 10 am ET! Arturo is currently in Finland rehearsing for his upcoming performance as Don José in Carmen, which will debut on February 14. Tune in to get a behind the scenes look as Arturo manages a busy life with celiac disease while never letting it hold him back from being a world-class opera singer. He’ll be showcasing a day-in-the-life of a gluten-free performer as he completes final rehearsals before the big show!
Support the Gluten in Meds Bills
On December 11, Senator Richard Blumenthal introduced S.3021, to the Senate floor. This bill is meant to amend the Federal Food, Drug, and Cosmetic Act to require the label of a drug that is intended for human use and contains an ingredient that is derived directly or indirectly from a gluten-containing grain to identify each such ingredient, and for other purposes. It will also be known as the Gluten in Medicine Disclosure Act of 2019 and uses the same language as H.R. 2074, the bill Representative Tim Ryan introduced to the House in April.
Please join Beyond Celiac in advocating for these bills. Learn more here. And stay up to date with all of our latest advocacy efforts here.
We Heart Science!
![A heart-shaped tablet in the foreground displays the words “We [heart] Science,” with a heart symbol replacing the word “love.” Blurred, round tablets are stacked in the background. The image has a blue-green tint.](https://www.beyondceliac.org/wp-content/uploads/2020/01/Valentines-2020-Campaign-300x200.jpg)
With Valentine’s Day right around the corner, we’re professing our love for research! Show your own love for celiac science by contributing to our research efforts. Gifts given this month will be matched up to $20,000! With our strategic approach, treatments or a cure will be possible. Last year, we funded close to $600,000 in grants for the most promising celiac disease science. You can make a difference by helping us continue to fund research. Together we can create a world Beyond Celiac.
Give now to accelerate celiac disease science!
Noticias sobre investigación
Gluten-Free Diets May Actually Be Low-Gluten Diets
Two thirds of patients who were strictly following a gluten-free diet still showed signs of having consumed gluten in the most recent DOGGIE Bag study analysis. The DOGGIE Bag study is an innovative approach to determining how much gluten celiac disease patients who don’t knowingly eat gluten actually consume and how much they excrete through urine and stool samples.
Potential Drug Improves Quality of Life in Some Patients
Researchers developing a potential treatment for celiac disease continue to review results from an earlier study to determine what the evidence shows about which patients the drug helps and how they benefit. A follow-up analysis of results showed certain patients showed improvement in some symptoms.
Clinical Trial for Celiac Drug Candidate Still Recruiting Participants
A celiac disease research study in Rochester, Minnesota, is assessing an investigational enzyme-based drug designed to protect the small intestine after gluten exposure. The study is NIH-funded and provides patient reimbursement for participation and eligible travel expenses
New Phase 2 Clinical Trial for Symptomatic Celiac Disease Patients Launches
The trial will continue testing ImmunogenX’s drug candidate latiglutenase, a drink-based medication made up of a combination of two enzymes that degrade gluten in the stomach. The study will monitor how well latiglutenase relieves symptoms and improves quality of life in people with celiac disease.
News, Events & Updates
Raise Money for Beyond Celiac on Facebook!
Happy birth-month to all our February-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!
The Digestive Disease National Coalition’s Annual Public Policy Forum is set to take place on March 1-2 in DC, and you are invited to attend! DDNC is an advocacy organization comprised of major national advocacy organizations (including Beyond Celiac), professional societies concerned with digestive diseases and industry. Attendees will hear from multiple panels of leaders in the digestive disease community, attend a reception and advocate for digestive disease research and improved patient care on Capitol Hill. Register here.
Beyond Celiac at the AARDA Summit
Beyond Celiac represented the celiac disease community at the Autoimmune Disease Virtual Summit hosted by the American Autoimmune Related Diseases Association (AARDA) and the National Coalition of Autoimmune Patient Groups (NCAPG) in Washington, DC. Watch the video recording of the Summit’s Patients’ Stake discussion, featuring our own director of administration, Nancy Ginter; it serves as a great resource that you can share with your family, friends and community members.
Missed Diagnosis Has Devastating Consequences
The transformation Matthew Khorana suddenly went through at 17 reminded his mother Melissa of watching the Hulk. Matthew, who has Down syndrome, had always been sociable, happy and caring. But almost overnight, he started exploding into a menacing and aggressive stranger.