THE BLOG
10/08/2015 02:28 pm ET Updated Oct 08, 2016

Cheerios Recall: The Celiac Disease Community Is Constantly At-Risk

General Mills recently announced that certain lots of Yellow Box and Honey Nut Cheerios produced at their Lodi, California facility and labeled gluten-free actually contained wheat flour, making them not gluten-free and thus unsafe for the celiac disease community. It's tough to swallow. The conversation about gluten-free brands of Cheerios has been simmering for months as some experts and advocates have expressed concern about whether the testing methods being used by General Mills are sufficient enough to protect the celiac disease community.

The National Foundation for Celiac Awareness (NFCA) has been in ongoing dialogue with General Mills to provide clarity on the validation of its testing methods. When working with gluten-free food manufacturers, NFCA expects both transparency and the utmost caution when making a gluten-free claim. With confusing allergen advisory statements and ingredients labels, I'm left to wonder why it feels like you need a PhD to navigate the gluten-free testing methods and protocols for producing food that is really gluten-free. For a disease that is self-managed, where patients typically are not closely followed by a specialist, this is a losing battle. That's why most people with celiac disease continue to experience intestinal damage despite their best efforts to maintain the gluten-free diet. Consider these conflicting statements about oats that many in the celiac disease community have received from doctors and nutrition experts:

• Oats are naturally gluten-free
• The oat supply is contaminated with unsafe levels of wheat and barley
• Patients with celiac disease can consume up to a ½ cup of pure oats per day
• Patients with celiac disease can consume up to 2/3 of a cup of pure oats per day
• Some patients with celiac disease will experience autoimmune symptoms when consuming oats
• Patients should wait three months after diagnosis before consuming oats
• Patients should wait until they show normal bloodwork before consuming oats after diagnosis

As you can see, these statements are extremely contradicting. When there are no clear guidelines, how can we know the appropriate way to introduce or exclude oats from our diet?

The General Mills recall is just another example of the challenges companies face in producing clean, safe gluten-free products. Suppliers need to understand the importance of strong management practices throughout production from start to finish, even when a product is low-risk and especially when including high-risk ingredients, like oats, in a beloved product.

Many in the celiac disease community have gotten sick from the contaminated Cheerios and we need to take this incident seriously. But, I am also thankful to Cheerios for taking their customer complaints seriously, instigating the voluntary recall and expediting the removal of the impacted boxes from store shelves across the US. While the error cannot be undone, I appreciate the effort to prevent other people with celiac disease from becoming ill. And I urge General Mills and any other supplier of gluten-free products to review, improve and validate their testing methods. Our community relies on this testing to stay healthy. Without trustworthy gluten-free claims, we cannot be safe and we live in constant fear. If you have any concerns over any gluten-free product from any manufacturer and feel your safety and health can be put at risk by eating it, I urge you to err on the side of caution and avoid the product completely.

To me, the Cheerios recall brings to light the biggest challenge that our community faces: We are constantly on call. We have to analyze everything we put into our mouths and we are always at-risk for getting sick. Why? Because we self-manage our disease. Celiac disease is a serious genetic autoimmune disease and we have little guidance from doctors, a heavy reliance on labeling laws that can be confusing, an insufficient treatment and no pharmaceutical drug therapy.

Despite the fact that we can have devastating long-term health consequences (like cancer) from ongoing exposure to gluten, it's not the threat of these outcomes that impact our lives in a real way. It's the day-to-day challenges that make life with celiac disease hard. Really, really hard. Going to work functions, traveling, having birthday parties, weddings, holidays and other social functions become sources of fear and anxiety rather than the enjoyable social experiences they are meant to be. Yes, maybe people with celiac disease, myself included, tend to feel paranoid and nervous every time food is the centerpiece of an event. Can you blame us? We're constantly at-risk for getting sick. We're regularly told that a food is gluten-free, that the utmost care has been had used in preparing it. We appreciate the effort of everyone who tries to help us eat and feel included, but sometimes we just can't take a risk knowing that we could be put out of commission. It impacts our lives and it impacts our relationships from immediate family and friends to our children's teachers and other parents. It impacts everything. When it comes to managing this disease, we are completely on our own. It is not normal to live in fear of food, and yet this is our reality.

What people with celiac disease truly need is a better way to manage this chronic illness with the guidance of experienced and knowledgeable doctors. We need to be taken seriously and we need research to make a gluten-filled world safer for people with celiac disease, whether this means a pharmaceutical intervention, a prevention strategy or other means of more effectively helping people to restore their health.

Until we arrive at a better treatment, however, we need our gluten-free food to be safe. Truly safe.