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Letter from Alice: Navigating Transitions with Celiac Disease
August is a time of transition. For many, it marks the end of summer and the beginning of a new season of routines—whether that’s heading off to college, starting a new school year, managing changing work demands, or caring for a newly diagnosed loved one. For those living with celiac disease, or supporting someone who is, these transitions come with an added layer of planning, vigilance, and emotional labor.
At Beyond Celiac, we recognize that these life changes—whether big or small—can bring unique challenges. For someone newly diagnosed, it may mean relearning how to navigate everyday life. For a parent, it might involve advocating for a child in a new school environment. For a college student, it could mean figuring out how to eat safely in a new dining hall. Each of these moments, while challenging, is also an opportunity to build confidence and community.
We are here to be helpful. Our team has curated specific resources for many of these challenging moments:
- For adults who are newly diagnosed: Getting Started Guide
- For caregivers of a child with celiac disease: Caregiver Resources
- For kids navigating their own diagnosis: Just for Kids
- For college students managing CD independently: University Toolkit
- And for a broader range of topics: visit our Resource Library
If you’re seeking connection and shared experience, we invite you to explore:
- Our Ambassador Program—let us know if there’s anyone you’d like to speak with!
- Virtual Town Halls
- Step Beyond Celiac, with events this fall in Pennsylvania, Massachusetts, and online
We know the path with celiac disease can be isolating at times, especially during periods of change. But you’re not alone—and you don’t have to navigate it alone. At Beyond Celiac, we remain committed to supporting you today, and driving toward treatments and a cure for tomorrow.
Wishing you strength and support during this season of change,
—Alice
Fall for a Cure!
Tired of the heat? Look ahead to cooler days with Step Beyond Celiac!
Save the date and join us this fall:
- Greater Philadelphia: September 20, Montgomery County Community College, in Blue Bell, PA
- Eastern Massachusetts: October 5, Middlesex Community College in Bedford, MA
Can’t join in person? Go virtual from anywhere!
Let’s step up—together for a cure!
Gluten-Free Recipes
Zucchini Bake
Take advantage of abundant, fresh summer vegetables by baking up squash, zucchini, and tomatoes for a delicious side to any main. Top with cheese for richer flavor, and bake it longer for a crisp, crunchy coating.
Fruit Salsa with Cinnamon Chips
Mix and match your favorite summer fruits in this sweet salsa. Enjoy on its own, or pair with gluten-free cinnamon chips. Both can be adjusted to your taste—try adding mango hot sauce for heat!
Voices of Celiac: Max’s Story
“For me, a cure would be twofold: it would lift a mental weight by making food and socializing feel easier and more relaxed, and it would offer physical reassurance that I’m supporting my body as best I can going forward.
I just want to thank everyone in the celiac disease community who’s doing the work—your efforts are making a real difference, and I’m grateful to be walking alongside you.”
Read Max’s Story
Share Your Story
Trivia Question of the Month
Question
How often should someone already diagnosed with celiac disease get the celiac disease blood test?
Answer
Someone diagnosed with celiac disease should get repeat testing annually. This means they should have their blood levels checked with the IgA-tTG or IgA-EMA tests once a year. This is to ensure their immune system has normalized, and the patient isn’t ingesting gluten. If the patient has a history of nutritional deficiencies or anemia, their doctor may also want to order vitamin or mineral panels. Learn more about follow-up testing.
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.
Community Makeup Survey; Researchers Want to Know About the GF Community
There are a lot of assumptions about the gluten-free community. Help us distinguish true from false and fact from fiction by filling out our demographics survey. This is open to everyone, including those from outside the US, with gluten sensitivity, gluten ataxia, old, young, caregivers, healthcare practitioners, and, yes, celiac disease patients. Please help researchers understand our community by filling out this survey—no account or login necessary!
Request for Proposals: AGA-Beyond Celiac Pilot Research Award
This award provides $40,000 for one year to independent investigators at any career stage researching new directions in celiac disease or gluten-related disorders. Applications are due September 18, 2025, and funding begins April 1, 2026.
Allergic Living Spotlight
Big Push On to See ADDE Allergy Menu Bill Succeed in California
The proposed ADDE Act has cleared another hurdle toward becoming law in California. The act would require restaurants to list major food allergens in writing on items on their menus. The bill, known as SB 68, passed in the state Assembly’s Health Committee.
News & Updates
Creating a Safe Gluten-Free Kitchen After Diagnosis
Were you or your child just diagnosed with celiac disease, non-celiac gluten-sensitivity, or another condition that means you have to go gluten-free? Worry not! Transitioning to a gluten-free lifestyle can feel overwhelming, but creating a safe kitchen is one of the most empowering first steps.
Host without the Toast: Gluten-Free Guide to Surviving Gatherings
Birthday parties, holidays with the family, celebratory team dinners after extracurriculars, or a simple gathering with friends: all can be fraught with tension when you’re gluten-free. It’s tough to relax and have fun when you’re constantly worrying about getting sick or being the odd one out. As patients ourselves, Beyond Celiac staff will give you our top tips for not just managing but enjoying parties when you’re gluten-free.
Raise Money for Beyond Celiac on Facebook!
Happy birth-month to all our August-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.