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Letter from Alice: To the Caregivers and Allies
Some things are just better together—a celebratory dinner, a sleepover, a scary movie, a holiday gathering. The gluten-free diet, too, is easier when you have support.
We often discuss the challenges that come with having celiac disease or another condition that requires the gluten-free diet—the loss of delicious foods and traditions, social isolation, symptoms and ongoing health concerns.
But as we begin the year-end holiday season this month, I want to turn our focus to the bright spots: the caregivers and the allies who ease those burdens.
There are so many ways you lighten the load! Maybe you pack a gluten-free lunch for your child, or you call a restaurant in advance to ensure they’re thorough enough for your friend with celiac disease. Maybe you advocate for your parent when they’re sedated for a procedure, ensuring that a nurse doesn’t offer them crackers to wake up with. Or you make sure your employee has a safe gluten-free meal at the annual staff retreat.
Whatever it is, we thank you. You may not realize how important your actions are.
As caregivers, you also carry a unique burden. The fear of messing up, the empathetic sorrow to see another’s pain, and, in some cases, giving up a tasty, gluten-containing treat so that no one is left out. This sacrifice, no matter how small or big, does not go unnoticed. It’s what allows those of us with celiac to go to work, school, or a social function! Instead of shrinking their world down to their home and a few safe foods, your diligence and advocacy allows gluten-free community members to safely enjoy the world.
We all deserve to enjoy eating with the ones we love, especially during the holidays. If you’re hosting any gluten-free guests soon, be sure to check out our entertaining guide so everyone can enjoy the celebration.
To everyone making life easier for those who are gluten-free, we extend a huge THANK YOU! You are a ray of light amidst the clouds of confusion, sadness, and anxiety that can come with any diagnosis.
If you are someone with a diagnosis that requires a gluten-free diet, take this as a sign to thank the people in your life who care for you. You can even share this letter!
In gratitude to all of you who support and care for our work alongside your loved ones, a happy and safe holiday season to all!
With gratitude,
Alice Bast, CEO
Gluten-Free Recipes
Pumpkin Snickerdoodle Cobbler
Pumpkin, cinnamon, and brown sugar—all are featured in the autumnal dessert, perfect for Thanksgiving or any fall get-together. If pumpkin isn’t your thing, you can always make snickerdoodle cookies without the cobbler base!
Green Bean Casserole
This is a classic staple of Thanksgiving meals, but pre-fried onions are rarely gluten-free. Try making this gluten-free green bean casserole, with GF fried onion crisps—the homemade version is better anyway!
Voices of Celiac: Noah’s Story
“After running tests, I discovered I had giardia as well as celiac disease (stage 3b). I’m asymptomatic, but I guess my gut was so damaged that my inability to clear the giardia is what led to me seeking appropriate medical care.
Even after I was diagnosed, my doctor didn’t take the time to educate me on what foods contain gluten. […] There needs to be more awareness of celiac disease within the Chinese community. So many of our cultural foods become inaccessible to us due to soy sauce having wheat.”
Read Noah’s Story
Share Your Story
Trivia Question of the Month
Question
Can you grow out of celiac disease?
Answer
No, children diagnosed with celiac disease will not “grow out of it.” Celiac disease is a lifelong condition.
This myth comes from the belief that celiac disease is an allergy—and children can, in fact, grow out of allergies, especially milk and egg allergies. However, celiac disease is not an allergy, it is an autoimmune disease, like multiple sclerosis or lupus.
Learn more about common myths in our latest podcast episode.
Research News
Poorer brain health in celiac disease and other gluten-related disorders is associated with a specific antibody triggered by gluten
A test that detects an autoimmune response to gluten that targets the brain could increase understanding of neurological complications in those who have celiac disease and other gluten-related disorders.
Phase 1 First-in-Human Study Assessing VTP-1000 in Adult Patients with Celiac Disease
AVALON is a Phase 1 clinical trial that aims to assess the safety and tolerability of VTP-1000, a potential treatment for celiac disease. VTP-1000 is a targeted immunotherapy designed to prevent or reduce symptoms of celiac disease from accidental gluten exposure by promoting tolerance to gluten.
Read more research news on our Research News Feed
Research Opportunities
New celiac disease clinical study: ASPIRION
Struggling with your celiac disease symptoms? We are looking for people with celiac disease to take part in a clinical study. You may be eligible to participate if you:
- Are 18 years or older
- Are still experiencing symptoms, despite following a gluten-free diet for at least 12 months
- Have a confirmed diagnosis of celiac disease
Living with celiac disease can be challenging. See if you may qualify for our study today.
*Intended for a US audience*
AVALON
AVALON is a phase 1 clinical trial assessing the investigational drug VTP-1000 in adults with celiac disease. This investigational targeted immunotherapy is designed to prevent or reduce symptoms from accidental gluten exposure by promoting tolerance to gluten.
- 18–65 years old
- Celiac disease confirmed by biopsy within the past 10 years
- Have been on a gluten-free diet for 12+ months
Additional criteria apply, and compensation for your time and travel may be available. Learn more at beyondceliac.org/avalon.
*Intended for a US audience*
GROW Project
The Celiac Disease Program at Children’s National Hospital is currently enrolling for the Gluten-Free Resilience and Overall Wellness (GROW) Project, a behavioral research study led by Dr. Shayna Coburn. This study is a randomized controlled trial, which means that you will be randomly assigned to one of three groups: a care-as-usual group, a skill-building group, or a skill building group with weekly GlutenDetect testing. Parents and teens will receive up to $120 (teens) and $90 for (parents) over the course of the study.
To see if you and your teen are eligible, click here.
Allergic Living Spotlight
Advocates Celebrate as California’s ADDE Menu Act Becomes Law
California Governor Gavin Newsom has signed the ADDE Act into law, making history for menu allergen transparency. With that pen stroke, California becomes the first state to require written notification of major allergens in restaurant menu ingredient descriptions. The legislation, known as SB 68, requires restaurants with 20 or more locations nationally to list major food allergens contained in each menu item.
News & Updates
Gluten-Free Thanksgiving Menu
If you’re celebrating Thanksgiving in the US, you may be worried about finding enough tasty, gluten-free options. Fear not! We’ve compiled a collection of recipes perfect for the season, from appetizers and salads to mains and desserts—and yes, we have multiple stuffing recipes. You deserve a tasty holiday, too!
I Didn’t Know That Was Celiac: Rewatch the October Town Hall
There are over 250+ symptoms associated with celiac disease, and some of them can be pretty unique. This past October, we hosted an event highlighting symptoms most people don’t know can be associated with celiac disease, as well as answered your questions about related conditions or odd manifestations. Whether you’re newly diagnosed and still trying to understand the complex web of autoimmune conditions or a long-time patient, there’s plenty to learn. Watch for free!
Raise Money for Beyond Celiac on Facebook!
Happy birth-month to all our November-born community members! When your big day rolls around, consider raising money for Beyond Celiac so that we can help fund new research by scientists in the celiac disease field. And a HUGE thank you to everyone who’s created fundraisers for us throughout the years! These fundraisers help make our important work possible.