Healthy Living

Radio Segment Shows Why Celiac Disease Awareness Is Needed

A St. Louis radio station's segment revealed that a pastry chef lies about their gluten-free products. Here's why more awareness on celiac disease is needed.

Radio Segment Shows Why Celiac Disease Awareness Is Needed

Recently a morning radio show in St. Louis broadcasted a segment called “Dirty Little Secrets.” A listener who worked at a bakery revealed she lied to customers by telling them there was no gluten in the baked goods they sold when gluten was actually an ingredient in their products.

Dana Smith, someone with celiac disease, said, “I was fuming, I was infuriated.”

Smith has celiac disease and cannot eat gluten. If she ingests even a tiny bit of the gluten-protein, she has horrific intestinal pain and skin problems. What makes Dana Smith even angrier was the caller made fun of those who don’t eat gluten.

Another listener, Kara Meyers, posted on her social media page, “If I eat something that has been cross-contaminated I get extremely dizzy. “It gets so bad that sometimes I can’t even walk. Next comes the heartburn followed by vomiting. Every single time this happens I wake up from a dead sleep throwing up in my sleep. It is both terrifying and disgusting. Then comes the horrible stomach cramps followed by a headache and intense drowsiness. A SMALL amount of gluten is like a sedative to me. The last time I was cross contaminated I slept for 18 hrs straight.”

It is imperative for patients with celiac disease to remain and stay gluten-free. Dr. Reuben Aymerich, SSM St. Clare Hospital said,“So, it’s not like diabetes where you can reduce the amount of sugar take and make up for it later, it’s thought you need to be 100 percent compliant if you can.”

Dana Smith used her social media accounts and the web to point out information about celiac disease for the celiac disease community in St. Louis. Smith went on to say that she wanted to teach everyone that celiac disease is not a disease for insults and jokes, but the condition is real and very serious.

Mary Michals, the owner of Gluten Free at Last Bakery in Maryville, Illinois also agrees that it’s time people learned about celiac disease and become more respectful of those who cannot eat gluten. Michaels says it perfectly when she exclaims, I wouldn’t make fun of you if you had diabetes or a heart condition it’s kind of like that.” Even eating a small piece of bread that contained gluten would put Meyers in the hospital.

The radio station has since commented that they did not mean to offend those with celiac disease; they knew to take the disease seriously. One host even explained that his mom has celiac disease, but this doesn't mean that the disease doesn't need more awareness.

What Is Celiac Disease?

Almost 3 million Americans have celiac disease which is an autoimmune disorder that causes challenging health problems when any gluten is eaten. Gluten is a protein found in wheat, barley, rye, and a few other grains, and gluten is the protein that makes dough elastic and chewy.

When someone with celiac disease eats something that contains gluten, their body overreacts to the proteins. The villi in the intestines are damaged, and nutrition can’t be adequately absorbed. Damaged villi lead to malnourishment and loss of bone density, infertility, miscarriages, and even neurologic disease or cancer.

Celiac disease isn’t a food allergy. It doesn't cause itchiness or watery eyes, its intestinal problems like gas, constipation or diarrhea. You can also experience nausea, anemia, abdominal pain, weight loss, heartburn, mouth ulcers, fatigue, and many more problems.

Many people with celiac disease are unaware that they have the disease. Approximately 20 percent of people with the disease never get a proper diagnosis. They don’t have the typical symptoms, and since damage to the intestine is slow, they keep eating foods with gluten.

If you suspect celiac disease is your problem, two blood tests will be used to diagnose celiac disease. Tests include a serology test that looks for antibodies, and genetic testing to look for human leukocyte antigens.

The only treatment that will solve your celiac disease symptoms is a strict gluten-free diet. You will need to avoid bread, cake, and baked goods, plus beer, pasta, cereals, some toothpaste, and certain medications.

Understanding what celiac disease is. Learn about what you can do to stay healthier.

Get the Word Out!

Like what Dana Smith is trying to do, it's important to get the word out that gluten is dangerous to those with celiac disease. Here are some things that are being done and what YOU can do.

Getting the word out to doctors is essential. Surprisingly enough, many doctors claim that celiac disease is rare. With over 3 million Americans suffering from celiac, this is a confusing statement. To get doctors to understand that celiac disease is real, one patient with celiac disease has started media campaigns.

Another person with celiac disease states that physician education is the answer. Pose the question to your doctor. Gather information and take it to your medical professional, ask questions, and request answers.

Join support groups in your area and contact the National Celiac Association. Join the Celiac Disease Foundation and get involved with the Team Gluten-Free campaign.

Team Gluten-Free is a fundraising program that provides a way for non-athletes and athletes to raise awareness and get information about celiac disease to the public. They also raise funds for research, education, and advocacy. Contact the Celiac Disease Foundation and have them sponsor a marathon, community services program, or any fundraising program that you think would be great for your community.

Celebrities with celiac disease can help you raise awareness about the disease and eating a gluten-free diet. Have them help promote awareness about the seriousness of celiac disease. Not many celebrities stand up to tell their stories about celiac disease, but one celebrity, in particular, Jennifer Esposito, spoke at an opening of a Schar’s (a gluten-free product) first U.S. facility opening. She told her story to a hospital visit when the staff didn’t even know what celiac disease was. Her plea: “We have a lot of work to do.”

Another celebrity who has celiac disease and has spoken about the condition is Keith Olbermann, host of MSNBC’s Countdown. In 2005, he held a charity auction to raise money for the Celiac Sprue Association. He said, “This was a chance for us to bring a little attention to a disease that probably affects 1 out of every 100 of us, celiac disease, wheat intolerance, and the Celiac Sprue Association.  I‘ve got it, in fact, a marginal case, but enough of one that I‘ve eliminated wheat from my diet.  Kids who have it often wind up being unable to assimilate nutrients from all foods, which means they really cannot grow.”Try to advertise these statements on your social media accounts.

One political celebrity who has been raising awareness of celiac disease is Jane Swift, the youngest woman ever to be elected to the Massachusetts State Senate. She later went on to become the first female governor of Massachusetts. Swift underwent many medical examinations and was finally diagnosed with celiac disease. At political functions, her staff calls ahead to ask for gluten-free food options. It is unfortunate, however, that Swift finds many people think that she's just difficult. Her demands have brought on a realization that this disease affects even politicians.

Celiac disease is real, and it hurts. Join local and national support systems. Run a marathon in the name of celiac disease and don’t be afraid to educate those around you of the dangers for you if you eat gluten.