The Beyond Celiac Newsletter
Monthly Newsletter
Note from Alice: The Next Generation
The hearts and flowers of Valentine’s Day can be a cheery spot as we grow weary of winter and distract ourselves a bit by celebrating all kinds of love.
This year I have a new, precious love — my first grandchild. He entered the world healthy and with a Beatles mop-top in early October. Since he arrived, I’ve been thinking about the long rope of genetics that stretches forward from parent to child to grandchild. I have a deeper understanding of the concern and commitment I’ve often seen in grandparents when it comes to celiac disease and their grandchildren. I am my grandson’s closest relative with celiac disease, but he does carry some increased risk of developing this serious autoimmune condition. A child with a grandparent or other second-degree relative with celiac disease has a 1 in 39 chance of getting celiac disease, while one with a first-degree family member — a parent, child, or sibling — has a 1 in 22 chance. This compares to 1 in 133 in the general population.
The other grandparents I have met and talked with are among those most focused on finding new treatments and a cure for celiac disease. They want their grandchildren to be able to grow up without the symptoms and potential long term complications of celiac disease. One of the hardest things is to watch their grandchildren suffer physical pain. But grandparents also don’t want their grandchildren to be restricted by the gluten-free diet, still the only treatment available. When their grandchildren are young, the grandparents worry about how the children will manage school lunch and birthday parties. Next come the concerns about how they will be able to participate in school sports trips, then dating, then choosing a college. These are all the issues that parents of children with celiac disease face, but grandparents are sometimes particularly pained that their grandchildren have to navigate so many things in life that should be much easier.
Beyond Celiac has robust plans for improving life for everyone with celiac disease. We have a science plan that lays out bold ways we will advance research, including investigating disparities in healthcare through a partnership with the National Minority Quality Forum (NMQF), a research and educational organization, to identify those who have fallen through the cracks and remain undiagnosed. We continue to fund researchers through our ongoing grants program. We partnered with a record number of key biotechnology and pharmaceutical companies in 2020 to recruit patients for clinical trials of promising treatments for celiac disease.
While finding new treatments and a cure for celiac disease so that people with the condition can eat without fear and live full, healthy lives became the mission of Beyond Celiac long before my grandson arrived, it has become even more personal to me since his birth, reaching out to the next generation in my family. I have a renewed passion, and his name is Jesse.
Together for a cure,
The Voices of Celiac Disease
We’re collecting personal stories of diagnosis and living life with celiac disease to help spread awareness and increase diagnosis rates of this serious disease.
What was your diagnosis journey like? What challenges have you faced? How do you manage life with celiac disease?
Share Your Story Today
Gluten-Free Cooking with Chef Oonagh Williams
Corn Puff Toffee Treat
Caution! This gluten-free treat is highly addicting! Renowned gluten-free chef Oonagh Williams takes us through her caramel corn puff recipe which would be great for celebrating Valentine’s Day or the Super Bowl.
Crustless Quiche: A Healthier Quiche Option
It’s all in the title. Enjoy this recipe without having to worry about the added crust, heavy cream, or the extra eggs often added to typical heavy quiche recipes. This is a tasty, health-conscious dish that works for breakfast or bunch, or hey, even lunch and dinner!
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.
Clinical Trials
ACeD Study
Do you, or someone you know, have celiac disease? The ACeD study is looking for volunteers with celiac disease to participate in phase 1 clinical trial testing the investigational drug KAN-101.
Requirements:
- 18-70 years old
- Biopsy-confirmed celiac disease
- On gluten-free diet for at least the last 12 months
Get More Information
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
FDA Gets Tough on Whole Foods
The U.S. Food and Drug Administration has sent a stern warning letter to the president of Whole Foods Market, slamming the national food retailer for allergen recalls of 32 food products in the past year.
News, Events & Updates
Watch “Glutened”
A rhythmic short film that expresses the impact everyday life has on a woman newly diagnosed with celiac disease, and how she discovers her own tempo.
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!
