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Ask An Expert: Celiac Disease Awareness


Says Alice: “After seeing 22 doctors and 8 years later, a family veterinarian actually brought it to my attention, leading to my diagnosis. The doctor knew that dogs often have problems with gluten, so he thought that maybe I was having trouble with gluten as well. A gastroenterologist ran that simple blood test and I was diagnosed.”

Alice Bast founded the National Foundation for Celiac Awareness based on her personal experience with celiac disease. Her own diagnosis ignited her passion to help the estimated three million Americans with celiac disease receive prompt and accurate diagnosis

Why she was inspired to start the foundation: “National groups were already in place that supported the disease, but no one was actively raising awareness of the disease itself. With this awareness, we can lead ourselves to a better quality of life. In order for large food companies to take an interest in changing products to gluten-free, a large group of consumers need to know they have it. My motto is that no one should have to suffer needlessly; awareness is the solution to this problem and having a gluten-free diet. I am also driven to raise awareness when I hear stories about women who say they couldn’t have kids, these women may have had a chance to become fertile had they been diagnosed earlier.”

What Is Celiac Disease?

Celiac is an autoimmune disease that afflicts about one in every 133 Americans. But an estimated 95 percent of people who have the disease are either undiagnosed or misdiagnosed.

What is the difference between Celiac disease and gluten intolerance? The difference between Celiac Disease (an auto-immune disease) and gluten intolerance is that if Celiac Disease results in the flattening of your intestines and is a serious medical condition that can lead to Lymphoma and Cancer.

What are some typical signs and symptoms of Celiac Disease? Check out the Symptom Checklist on CeliacCentral.org. There are almost 300 signs and symptoms, some of the most common being: diarrhea, bloating and constipation. There are also neurologic problems like tingling fingers and feet, infertility, anemia and fatigue.

How is the disease diagnosed? The first step is to get a simple blood test, and then you should get an endoscopy where a biopsy is conducted on your small intestine. Before you get that endoscopy, remember to keep up your normal diet to get the best results.

Living With Celiac Disease

Large food companies are now making affordable and accessible products for those with Celiac disease. An example of that would be Post’s Pebbles Cereals and Treats, which are both rice-based and gluten-free. Don’t forget the foods that are naturally gluten-free, such as fruits, vegetables and meats (items lining the perimeter of the supermarket).

For parents: Keep in mind that your child is not alone and can live a normal life. It’s not necessary to give up your favorite snacks since large food companies now make it affordable and available to purchase gluten-free products. Keeping a snack handy for that child in your purse or glove compartment, something like a Post Pebbles Treat, will create less anxiety for that child if they end up in a situation where they’re on-the-go and hungry.

What, in your opinion, is the most difficult part of having the disease? Going away to college or a school cafeteria – it’s so important that we work with colleges and universities to ensure that there are gluten-free foods available and that it’s safe to eat.

What is your favorite gluten-free recipe? Do you recommend any websites or books that offer great gluten- free recipes? For some great recipes, check out CeliacCentral.org. There are so many great sites and cookbooks out there! Eating Well Magazine and Gluten-Free Living have great recipes also, Peter Bronski, an NFCA Athlete for Awareness, recently launched a new cookbook entitled, “Artisanal Gluten-Free Cupcakes.” Peter also wrote “Artisanal Gluten-Free Cooking” in 2009.

What is the best piece of advice you have to offer to someone who has just been diagnosed with Celiac disease? Focus on the foods that you’re able to eat and find a buddy that you can eat gluten-free foods with. Also, download the “Getting Started” guide on our website, CeliacCentral.org.

Want To Get Involved With NFCA?

There a lot of ways to get involved with the NFCA. You can host gluten-free “Cupcake” parties at your apartment, and volunteer to submit personal recipes and stories. You can also reach out to us on the website to help us in ensuring that local schools and communities become trained on gluten-free protocol.

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