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Celiac.com 01/07/2025 - The U.S. Food and Drug Administration (FDA) is tasked with safeguarding public health, but for those with celiac disease—a serious autoimmune condition triggered by gluten—the agency’s regulatory sluggishness is falling short. This gap in food safety policy has left millions of Americans, including children like 11-year-old Jax Bari, navigating the life-threatening challenges of celiac disease with inadequate protections. Celiac Disease: More Than a Dietary Restriction Celiac disease affects an estimated 3.3 million Americans and is far more than an inconvenience. It is a life-altering condition where ingesting even microscopic amounts of gluten, a protein found in wheat, barley, rye, and most oats, can trigger severe reactions. Symptoms range from gastrointestinal distress to neurological complications and long-term risks such as cancer, anemia, and malnutrition. Unlike other food allergies, there is no treatment or medication to counteract gluten exposure—strict avoidance is the only option. For individuals like Jax, everyday activities such as eating out, attending social events, or even choosing a career can be fraught with risk due to the prevalence of gluten and the lack of clear labeling on food products. The absence of mandatory labeling for gluten-containing grains other than wheat exacerbates this challenge, leaving celiac sufferers exposed to potentially life-threatening situations. A Simple Solution: Gluten Labeling In September 2023, Jax and his family founded Celiac Journey, an advocacy group pushing for change through a Citizen Petition submitted to the FDA. The petition calls for gluten to be designated as a major allergen and explicitly labeled on all packaged foods in the U.S. This step could be implemented under the FDA’s existing authority through the Food Allergen Labeling and Consumer Protection Act of 2004 (FALCPA). However, the FDA has yet to act decisively, even as 87 other countries already require gluten labeling as a priority allergen. At a January 2024 Food is Medicine Summit, FDA Commissioner Robert Califf acknowledged the petition but offered little in terms of action. The hesitation seems tied to institutional inertia and opposition from industry stakeholders, raising the question: Why should protecting public health take a back seat to commercial interests? The Impact of FDA Inaction The FDA’s failure to mandate gluten labeling has real consequences. Unlike many allergens, gluten contamination often goes unnoticed until it’s too late. A lack of clear labeling forces celiac patients and their families to decipher ingredient lists, cross-reference manufacturing processes, and rely on guesswork—all while knowing that even a small mistake can lead to severe health outcomes. Cross-contamination adds another layer of risk. Packaged foods that may seem safe could contain traces of gluten due to shared equipment or production lines. Without mandatory gluten disclosure, consumers have no way to make fully informed decisions about what they consume. Jax’s journey exemplifies the frustration and fear experienced by families dealing with celiac disease. Despite his young age, he has emerged as a passionate advocate, confronting FDA leadership and calling out the bureaucracy that prolongs critical decisions. The Science Supports Action Scientific evidence backs the need for gluten labeling. Both the World Health Organization (WHO) and the Food and Agriculture Organization (FAO) recognize gluten as a significant allergen. Their findings align with the experiences of celiac patients who struggle with hidden gluten in foods labeled as safe. A single policy change—requiring gluten disclosure on all food labels—could dramatically improve the lives of millions. Yet, the FDA’s culture, described in a recent Reagan-Udall Foundation report as “sluggish and non-responsive to public health concerns,” has stalled this progress. Restoring Faith in Food Safety Jax’s Citizen Petition is more than a call for gluten labeling; it’s an opportunity for the FDA to demonstrate that it prioritizes the health and well-being of its citizens. Swift action could address the needs of 750,000 celiac patients and countless others with gluten sensitivities. The FDA’s Human Foods Program, led by Deputy Commissioner Jim Jones, has a chance to change the narrative and prove that the agency is capable of timely, meaningful action. By granting the petition, the FDA would take a critical step toward rebuilding trust and aligning the U.S. with global food safety standards. The Clock Is Ticking For families like Jax’s, every day without clear gluten labeling is another day of uncertainty, risk, and preventable harm. The FDA must act decisively to protect vulnerable populations, ensuring that no child—or adult—has to navigate a life-threatening condition without adequate support. It’s time for the FDA to show Jax and others that public health matters more than bureaucracy. Granting the Citizen Petition would send a powerful message: the agency is committed to safeguarding the well-being of all Americans, especially those most at risk. Jax Bari’s advocacy shines a spotlight on the urgent need for reform in gluten labeling policies. His story is a testament to the resilience of celiac patients and their families, who refuse to let institutional inertia dictate their futures. The FDA has an opportunity to act now and fulfill its mission to protect public health. The question is, will it rise to the occasion? Sign the FDA Citizen Petition at: regulations.gov Read more at: foodsafetynews.com Watch the video version of this article:
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Celiac.com 12/20/2024 - Living with celiac disease means more than just avoiding gluten; it involves a lifelong commitment to a strict diet that ensures every ingredient and meal is free from even trace amounts of gluten. However, the financial burden of maintaining a gluten-free lifestyle is significant. To help mitigate this, a new federal petition is circulating, advocating for a $1,000 refundable tax credit for Canadians with celiac disease. This proposed measure addresses the rising costs of gluten-free products and recognizes the medical necessity of a gluten-free diet for those affected. The Financial Reality of Living Gluten-Free The cost of gluten-free food can be 150-500% higher than similar gluten-containing products, creating a hefty financial burden for those with celiac disease. Betsy Hiebert, a Winnipeg-based bakery owner with celiac disease, describes how her family’s gluten-free bread costs about $11 per loaf, compared to the $6.99 spent on her husband’s gluten-containing bread. For her business, gluten-free oats are twice as expensive as regular oats due to the extensive steps needed to prevent cross-contamination with gluten. These costs reflect the need for specialized production facilities and stringent testing protocols that ensure gluten-free products are safe for individuals with celiac disease. The Hidden Costs of Cross-Contamination Prevention Hiebert highlights the scarcity of gluten-free ingredients on the Canadian Prairies, despite the abundance of crops like oats. In traditional facilities, oats often come into contact with wheat, barley, or rye, making them unsafe for people with celiac disease. To provide gluten-free options, food producers must rely on gluten-free-dedicated facilities, which adds to the price. The limited availability of such facilities in Canada further inflates the cost of gluten-free foods. This extra expense is necessary, as even trace amounts of gluten can lead to severe symptoms for those with celiac disease. Christa Dubesky, president of the Canadian Celiac Association (CCA) Manitoba Chapter, points out that gluten consumption can trigger over 300 different symptoms in individuals with celiac disease, from digestive discomfort to more systemic effects like brain fog and joint pain. Ensuring food safety is not only a dietary choice but a necessity for maintaining health and avoiding serious complications. Seeking Tax Relief: The Federal Petition for a Celiac Tax Credit While the Canadian government currently offers a Medical Exemption Tax Credit for people with celiac disease, it’s complex and not easily accessible. Melanie Bauer, a CCA Manitoba Chapter member, describes the burdensome process of tracking gluten-free grocery receipts and calculating the price difference with regular gluten products. The tax credit only applies if the additional costs exceed three percent of the household income, making it difficult for many to qualify for the deduction. For individuals like Bauer, the benefits are often not worth the time-consuming paperwork and hassle. To simplify this process and support those in need, a federal petition was launched in October 2024, calling for a straightforward $1,000 refundable tax credit. Within weeks, the petition received over 24,000 signatures, demonstrating significant public support. This tax credit would help alleviate the financial burden for Canadians with celiac disease, ensuring that they can afford the safe food they need without compromising their health. Addressing Food Insecurity Among the Celiac Community The Canadian celiac community faces additional food insecurity challenges. Bauer notes that the number of requests for gluten-free food hampers at Harvest Manitoba has more than doubled in the past three years. In addition to regular hampers, the organization now prepares a special batch of gluten-free hampers for Christmas, highlighting the increasing demand for accessible gluten-free food. Rising costs and limited options force many people with celiac disease to make difficult choices, sometimes prioritizing gluten-free food for children while risking their own health by eating gluten-containing products. Dubesky emphasizes that the proposed tax credit could reduce these struggles. For families affected by celiac disease, this financial support would enable them to maintain a gluten-free diet without straining their resources. A tax credit would make it easier for people with celiac disease to adhere to their medically necessary diets, potentially preventing adverse health outcomes and reducing their need for medical interventions. Long-Term Health and Economic Benefits of Supporting a Gluten-Free Diet Providing tax relief for people with celiac disease not only improves individual well-being but can also reduce strain on the healthcare system. When people with celiac disease are able to maintain a strict gluten-free diet, they experience fewer symptoms and avoid the long-term complications associated with gluten exposure, such as nutritional deficiencies and increased risk for certain cancers. Hiebert argues that supporting people with celiac disease in maintaining a gluten-free diet reduces their need for doctor visits, ultimately saving healthcare costs. This tax credit could make gluten-free food more accessible, enabling people with celiac disease to live healthier lives without the stress of constantly calculating their grocery bills. Additionally, it raises awareness of celiac disease as a medical condition, not a dietary choice or trend. Recognizing gluten-free food as a medical necessity supports people with celiac disease in leading active, fulfilling lives without the constant worry of hidden gluten in their meals. Conclusion: A Step Toward Inclusivity and Health Equity The petition for a $1,000 refundable tax credit is more than a call for financial support—it’s a step toward inclusivity and health equity for those with celiac disease. With the high cost of gluten-free food and the limitations of existing tax deductions, many Canadians with celiac disease are left to shoulder the financial burden of their dietary needs. This tax credit would alleviate that burden, making it easier for individuals to access the safe food they need to maintain their health and well-being. For people like Hiebert and Bauer, as well as countless others affected by celiac disease, this measure would be transformative. It would not only make gluten-free living more sustainable but would also raise awareness about the real challenges faced by those with celiac disease. The petition is an important step in recognizing the importance of accessible, safe food for all and creating a more inclusive society that understands the unique needs of those with medical dietary restrictions. Read more at: globalnews.ca
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Celiac.com 04/04/2024 - Jon and Lexi Bari, co-founders of Celiac Journey, have penned an open letter to the editors of the Food and Drug Law Journal about their FDA citizen petition to require the labeling of gluten on all packaged foods. Here's the rundown. In a heartfelt plea for greater safety and transparency in the food industry, Jon and Lexi Bari, co-founders of Celiac Journey, have taken a significant step towards advocating for the rights of individuals living with Celiac Disease. Their impassioned open letter, featured in the Food and Drug Law Journal, sheds light on their FDA citizen petition aimed at ensuring the labeling of gluten on all packaged foods sold in the United States. Celiac Disease, a severe autoimmune condition triggered by the ingestion of gluten, poses significant challenges to those afflicted and their families. For the Bari family, the journey began in 2018 when their five-year-old son, Jax, was diagnosed with this life-altering condition. The sudden realization of the dietary restrictions and safety concerns associated with Celiac Disease thrust the Baris into a world of uncertainty and fear. Despite the enactment of the Food Allergen Labeling and Consumer Protection Act of 2004 (FALCPA), significant gaps remain in the labeling requirements for gluten-containing grains such as barley, rye, and oats. This discrepancy exposes millions of Americans, including Jax, to the constant risk of accidental gluten ingestion due to incomplete and confusing food labels. The Baris' petition to the FDA aims to rectify this critical issue by advocating for the mandatory labeling of gluten on all packaged foods, aligning with international standards and the recommendations of leading health authorities. Their efforts have garnered support from esteemed institutions and organizations, further underscoring the urgency of their cause. With one crumb of gluten posing a serious threat to Jax's health and well-being, the Baris emphasize the imperative of preventive measures over remediation. Their courageous advocacy serves as a beacon of hope for the 3.3 million Americans living with Celiac Disease, urging policymakers to prioritize consumer safety and quality of life. As the Baris eloquently state, until a cure for Celiac Disease is found, the simple act of requiring gluten labeling has the potential to make a profound difference in the lives of those affected. In the spirit of compassion and accountability, they call upon health leaders to heed their plea and enact meaningful change for the Celiac community. In the pursuit of a safer, more inclusive food landscape, the Baris' citizen petition stands as a testament to the power of advocacy and the unwavering resilience of those impacted by Celiac Disease. Read more at FDLI.org
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Celiac.com 02/09/2024 - In a push for increased inclusivity, a gluten-intolerant student has garnered overwhelming support for her petition urging McDonald's to offer more gluten-free options in its UK branches. Chloe Radzikowski, a 22-year-old trainee paramedic from Leigh, launched the petition, which highlights the disparity in gluten-free offerings between UK and European outlets of the fast-food giant. So far, the petition has gained over 10,000 signatures. Radzikowski, who developed gluten intolerance last year, expressed her shock and frustration at discovering that McDonald's provided more gluten-free choices in its European locations than in the UK. Speaking to BBC Radio Manchester, she emphasized the challenges faced by those with coeliac disease or gluten intolerance, describing the limited food choices and the anxiety associated with potential illness from unintentional gluten consumption. In the UK, McDonald's offers a handful of gluten-free items, including fries, hash browns, fruit bags, carrot sticks, salads, and some desserts. However, the chain explicitly states that, due to the setup of their kitchens, they cannot guarantee the prevention of cross-contamination, and burgers are notably absent from the list of gluten-free options. Radzikowski's advocacy gained momentum after her discovery of a more extensive gluten-free menu in McDonald's Spanish restaurants during a family holiday to Lanzarote. Her petition emphasizes the need for a broader range of gluten-free choices in the UK, aligning with the diverse dietary requirements of individuals with coeliac disease or gluten intolerance. A McDonald's spokesperson responded to the petition, noting that all UK staff undergo allergen awareness training, emphasizing the importance of preparing customized orders with clear allergen labeling. Despite the existing gluten-free offerings, the petition draws attention to the unmet demand for gluten-free burgers and a more comprehensive menu that accommodates a wider spectrum of dietary needs. The petition has attracted notable support, including an endorsement from reality TV star Megan McKenna. As the number of signatures continues to climb, the movement highlights the growing demand for increased gluten-free options in popular fast-food chains, shedding light on the importance of accessible and diverse food choices for individuals with specific dietary requirements. McDonald's now faces increasing pressure to address these concerns and enhance its gluten-free offerings in the UK. Read more at BBC News
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Hofstra Students Petition for Gluten-Free Dining Awareness
Jefferson Adams posted an article in Additional Concerns
Celiac.com 04/17/2019 - Hundreds sign petition calling for dining reform at Hofstra. The petition stems from the experience of junior marketing major Sarah Peres, who has celiac disease. Peres began the petition after receiving a salad with wheat croutons on it. First, she was mildly upset, but then she turned toward action with her petition. Peres says that she is tired of feeling hungry and frustrated whenever she is in the dining halls at Hofstra, and that she hopes to make a change in campus' food policy. “It is almost as if Hofstra would rather us starve than be able to eat a safely prepared gluten-free meal,” Peres said in her petition. Her petition, titled “More gluten-free, allergy-free, and dietary restriction food options at Hofstra University,” exposed serious flaws in the dining hall policies. Her efforts have been met with support from more than 500 concerned students, parents and community members. Lisa Ospitale, the District Marketing Director of Campus Dining by Compass Group, said that available options are based on sales, sales history, and requests from the overall community population. Basing food offerings on sales and demand is fine, but schools still have responsibilities under the ADA to offer options for students with food allergies and sensitivities. That means adequate training and policies to ensure student well-being. Speaking of the school’s current allergen-friendly dining area, Ospitale says that the school should “offer G8 in the Student Center, because it is an area that is separate from other areas creating a safe location for those with allergies to eat.” Peres feels that Hofstra still has a ways to go. “There’s a lot of work that needs to be done,” she says. They need to have a second kitchen…They need to educate their staff more. If they don’t have a separate kitchen, then they need to clean their utensils and have separate utensils for everything,” Peres added. Stay tuned for more on this and other stories about gluten-free and allergen-free food options at colleges and universities. What do you think? Do colleges and universities need to do more in general to accommodate students with food allergies? Share your thoughts below. Read more at The Hofstra Chronicle -
Celiac.com 10/08/2012 - Since 2004 when Congress passed the Food Allergen Labeling and Consumer Protection Act, sufferers of celiac disease have awaited some sort of finalized action from the FDA to set a rule for gluten-free labeling. The FDA proposed a gluten-free food labeling rule in 2007 and since then, there have been multiple open comment periods for it, but as of yet, there has been no finalized action to control gluten-free labeling in food products. In an effort to expedite this process, “Jennifer I” of Sebastopol, CA started a petition on the White House's official website. Part of the concern driving this petition stems from the fact that for many, the gluten-free diet is one of necessity, not of choice. 'Gluten-free' has become something of a new marketing buzzword, as the diet's popularity has grown dramatically in recent years. This makes labeling more important than ever: companies seeking to cash in on a growing market may be tempted to cut corners and label products as gluten-free, when in fact they are not. Supposedly, the FDA will be finalizing their rule sometime this year. Whether or not they stick to that time frame, this petition is a quick and easy way of putting more pressure on the federal government to finalize a gluten-free labeling rule. Source: https://petitions.whitehouse.gov/petition/finalize-standards-gluten-free-labeling/SsmdZh3C?utm_source=wh.gov&utm_medium=shorturl&utm_campaign=shorturl
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Celiac.com 02/06/2009 - Have you, as a Celiac, ever suspected that the medicine you were taking was making you sick? It could be because that pill or capsule was made with gluten. That’s because the U.S. Food and Drug Administration (FDA) allows pharmaceutical companies to use wheat gluten, a large protein that celiacs can’t eat, to be used as a mixing agent in drugs. Drug companies use chemical agents called excipients as inert additives to mix and bind the actual active ingredient of a drug so that you can take it in the form of a conveniently sized pill. Currently gluten is on the list of permitted excipients that you might be taking without even knowing it. That’s why I have petitioned the FDA to get gluten out of medicine. In a constitutionally protected act, I have submitted a Citizen’s Petition to the FDA requesting that they take gluten off of their list of permitted excipients. As I write, the National Foundation for Celiac Awareness has asked the FDA only to label medicines that contain gluten, but this approach will continue to allow gluten to be used at the decision of the manufacturer. The FDA has a decision to make. I believe that they should follow existing law and recognize that gluten is toxic to a significant segment of the population. If the FDA got gluten out of medicine it would mean that you could confidently take aspirin, any generic, or any othe drug whether prescribed or over the counter, and not have to worry about gluten—and that would be true for all drugs. It would not, however, mean that the supplements you were taking would be gluten-free, because supplements aren’t regulated like drugs, but are regulared like food. As you probably know, foods will soon be labeled according to a federal gluten-free standard. But only some food makers will decide to make the products that will be labeled gluten-free. And the same thing might happen to drugs, if the FDA decides it is sufficient only to extend the labeling standard to drugs. As a Celiac, you won’t be able to take a drug unless it says gluten-free, because if doesn’t say gluten-free, who knows what’s inside? Is that Tylenol OK for you? Or how about that generic heart medication you get in the mail? The reality is that some day soon, the FDA might allow pharmaceutical companies to make business decisions on whether or not you can take a necessary medication. Taking medicine isn’t a matter of personal choice like foods. Rather, a doctor might not be able to give you a prescription because it might contain gluten. Maybe there won't be an equivalent drug that is also gluten-free. Time to Take Action! There is, however, something you can do. I petitioned the FDA to get gluten gone for good. I asked my congresswoman to write a letter to the FDA highlighting her concern about my petition. And any citizen can comment to the FDA about my petition, for or against. You can ask your congressman to pay attention to the decision, which the FDA is about to make. Now that I’ve wound you all up, here is how to contact the FDA. Go on the internet and surf to www.regulations.gov and enter the Docket number of my petition, 2008-P-0333, which you might enjoy reading. My petition is called Michael Weber of New York State. Highlight the line for comments of submissions, and then tell them what you think and who you are. Tell the FDA why you think there shouldn’t be any gluten in your medicine—please do it now!
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