Living with celiac disease can often feel like being in limbo, caught between two worlds.
The distressing paradox is that we need to be taken seriously before we’re sick, because that’s the only way we can manage our condition. But too often, it’s not until we’re gravely sick that we’re taken seriously.
Taken a step further, it’s not until we are sick that people around us might realize how ineffective the gluten-free diet can be. Eating gluten-free can prevent or ease symptoms, but it is not a treatment that can help you feel better or heal faster if you accidentally ingest gluten. “Isn’t there something you can take?” they might ask when you’re doubled over in pain or unable to leave the safety of your own bathroom or have so much brain fog that you can’t think straight.
So how do we manage the paradox of an invisible illness until we have an effective treatment? With community. You need people who believe your experience and who believe the seriousness of the condition.
This might also feel like a paradox if you’ve ever had your concerns ignored. Or maybe the idea of community feels exhausting because of the constant need to advocate for yourself. It’s draining, sometimes dehumanizing, and often isolating.
But, difficult as it may be to find sometimes, the only balm for isolation is community. It’s bringing someone in who will learn about the gluten-free diet. It’s a friend who will read labels for you before buying a snack, or ask questions at the restaurant when you’re too embarrassed or exhausted. It’s a parent talking with their child’s teacher about school lunches, or a child talking to the food staff at a memory care clinic about their parent’s strict, gluten-free diet.
So, this October, in honor of Disability Awareness Month, I challenge you to discuss celiac disease with one person. Maybe this is a friend who can help you find new restaurants to try or a coworker who can ensure your food stays safe in the staff fridge.
We are stronger together. Help us—help yourself—knit a stronger community by making this invisible illness visible.
Together for a cure,
—Alice Bast
This fall, we set an ambitious goal to raise $25,000 for treatments toward a cure for celiac disease. Thanks to a $15,000 matching gift, your donation today will go twice as far to fund cutting-edge research and accelerate treatments.
Give today to double your impact!
P.S. Check out the many ways to give, including employer matching and stock gifts!
Or raise $$ for research by signing up for the Eastern Massachusetts Step Beyond Celiac on Sunday, October 5, or the virtual event, taking place any time this fall!
Celebrate cooler weather with a creamy, easy pumpkin soup. You can cut down on time by using canned pumpkin. If pumpkin isn’t your thing, you can easily substitute in butternut squash.
For heartier fare, try our recipe for Mongolian beef soup, complete with noodles. You can add or subtract vegetables to suits your tastes, though we think it’s pretty great as is.
“Since being diagnosed with celiac disease, my life has changed radically for the better. At first, it felt overwhelming. Learning that gluten was the root of my suffering meant changing nearly everything about how I ate, shopped, and even socialized. But over time, what seemed like a burden turned into a kind of freedom. There’s peace in knowing what I’m dealing with. I’ve gained back control over my life, one gluten-free choice at a time.”
Read Anusha’s Story
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Do people with celiac disease need to use gluten-free bathroom products, like shampoo, soap, and conditioner?
Generally, no, people with celiac disease do not need to purchase gluten-free hygiene products. Touching gluten will not make someone with celiac disease sick, so they are fine to use products like shampoo, soap, and conditioner made with wheat, barley or rye. However, some may opt for gluten-free products anyway, for peace of mind.
A few potential exceptions to note:
Learn more about gluten in hygiene products and cosmetics.
Even those who have high-risk conditions for celiac disease face long delays in getting diagnosed, according to a study by Weil Cornell Medicine and Beyond Celiac published recently in the Journal of Clinical Medicine.
Read more research news on our Research News Feed
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:
Living with celiac disease can be challenging. See if you may qualify for our study today.
*Intended for a US audience*
Significant layoffs in the U.S. Food and Drug Administration are eliciting concerns about how the staff cuts will impact the food allergy community. The FDA’s reduced workforce raises questions about the oversight for food allergy recalls, labeling, inspections and transparency.
You may have already seen oodles of candy at your local grocery store, and with Halloween later this month, you may see even more! Stay safe by reviewing our non-exhaustive list of gluten-free candy. If you have questions, contact the candy manufacturer directly. We wish you no tricks and all treats this October!
Happy October to all those who celebrate spooky season! If you’re an avid Halloween-lover or a guardian looking to ensure their gluten-free kiddo has a happy Halloween, check out our guide page for an overview of gluten-free candy, trick-or-treating ideas, and Halloween-themed recipes.
There are over 250+ symptoms associated with celiac disease, and some of them can be pretty unique! At this virtual event on October 14, we’ll highlight symptoms most people don’t know can be associated with celiac disease, as well as answer 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. Register for free!
Happy birth-month to all our October-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.
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