How Symptoms of Celiac Disease Changed Sarah Brown’s Life Tips for Sticking to a Celiac Disease Diet

Like most Americans, actress Sarah Brown grew up thinking bread was the staff of life. Little did the “Days of Our Lives” soap star know. For her, this dietary staple – a gluten food – is like kryptonite to Superman. She talks about how having symptoms of celiac disease helped her regain her health and solve a family epidemic… Sarah Brown's first clue of celiac disease was a swollen face. At first, the soap star, known to millions of TV fans as waify Aggie Jones, initially attributed the puffiness to water retention from salt and the overzealous exercise schedule of a working actress. Then she started having stomach problems, energy-zapping fatigue and rashes. Her mother and other family members also had similarly unexplained symptoms. "A pattern started to emerge, so I knew there was an allergy of some kind," says Brown, 37. "I said to myself, 'I’m going to find out what’s killing my family and, if I die in the process, at least I will [know] I did everything I could to find out what’s going on.'" But getting the correct celiac disease diagnosis wasn't easy. The disorder is triggered by an abnormal immune reaction to foods with gluten, a protein in grains like wheat, rye and barley. When people with celiac disease eat foods or use products with gluten, their immune system attacks and destroys villi – tiny, fingerlike protrusions lining the small intestine, according to the National Digestive Diseases Information Clearinghouse. Without those, a person becomes malnourished, no matter how much food they eat. In this exclusive Lifescript interview, the former “General Hospital” star discusses her symptoms of celiac disease, how to spot foods with hidden gluten and her tips for a successful celiac disease diet. What were your symptoms of celiac disease? I went to the doctor when I noticed my face would swell whenever I ate bread. Also, I was having out-of-control allergies to pollen [and] felt I was going to pass out after eating bread or pasta. It would come on really quickly. It was like I was sinking into a coma. I couldn't keep my eyes open. Was it difficult to get a celiac disease diagnosis? I had a good idea what it was in 2007, but it wasn't until 2008 that I saw a specialist [who] had been highly trained in the symptoms of celiac disease. By the time I was tested, I had stopped eating gluten almost completely. In fact, I was told I didn't have celiac or wasn't allergic to bread. I ended up going home and – not having had any gluten for about three months – ate a half a loaf of bread. Then, I didn't get out of bed for almost three months. Which test finally confirmed the celiac disease diagnosis? At that point, I started to photograph what happened to my face as a result of [eating foods with gluten], because the next morning, I woke up looking like someone had beaten me. I took those photographs and went for a second opinion at UCLA. I eventually had a gene test and then had seven people in my family who were having symptoms of celiac disease – ranging from epilepsy to skin rashes – get tested. All of them became symptom-free by going on a gluten-free diet. My mom, too, tested positive for the celiac disease gene. She had epilepsy and a lot of other symptoms of various autoimmune diseases that celiac can [trigger]. Was your mother's epilepsy cured by a celiac diet? No, you can't cure epilepsy. Once celiac disease does extensive neurological damage, I believe that’s permanent. [Because of what happened to my mom] I want to help people who haven’t been diagnosed. I watched [her] from the time I was 12 years old. It completely destroyed an otherwise healthy person. It took a lot of years away from both of us. As a child, were you taught that bread is wholesome? I believe a lot of my family are sick is [because] my parents were naturalists. They were very into whole foods. My mom made her own bread and it was always wheat. When I was a kid, we had to eat wheat bread. So as I grew up, I took to heart that bread is good for us. We should consume large quantities of it. How much gluten you eat can affect whether you develop [symptoms of] celiac disease, along with a lot of other factors they don't know. Your daughter, Jordan, is 13 years old. Is she on a gluten-free diet? She has the gene. But she doesn’t have celiac disease as of the last time she was tested. They recommended she come back in five years and get tested again. I’m watching her, and Jordan is, obviously, highly aware of it. How has she reacted to the possibility of getting celiac disease? On the one hand, there’s the little rebellion that makes her think, I’m going to eat foods with gluten like crazy. The other part of her realizes there are risks involved [because of] her genetic makeup. We’re watching all the kids [in the family], and several are on gluten-free diets. You have used the word "kryptonite" to describe foods with gluten. Besides wheat bread, what other products must you avoid? Gluten is in anything that contains barley, wheat or rye. Unfortunately, a couple of times we [bought] wheat-free cereal with gluten in it. That can be very misleading, especially if a company has a cereal that is gluten-free and another that is wheat-free, and they look exactly the same. [Manufacturers] use barley malt [which contains gluten] to flavor so many things. I have to be very careful. Now that there's more awareness about the symptoms of celiac disease, is it easier to find foods without gluten? If you have to be stricken with [an illness] that makes daily life difficult, celiac disease is great. Because it affects so many people, laws and foods [are] changing. Have you become a good cook as a result of your celiac disease diet? I was already a good cook. Cooking was a huge part of my life. Every Sunday we would do big dinners. Being diagnosed was devastating for me because it changed my relationship with food [and] cooking. It’s difficult because you have to make two separate meals, and I was never great at timing. Now, there are so many wonderful flours and great products that it’s easy. I can just buy gluten-free things for the most part and then add gluten for my daughter and other people when they come over. I have gluten-free spices and [other] things, so I feel comfortable cooking side by side with my daughter. Do you have tips for others with symptoms of celiac disease or on a celiac disease diet? Do you know that vanilla has gluten in it most of the time? Vanilla ice cream will have gluten in it, because vanilla usually contains alcohol as the first ingredient, which is grain alcohol and not distilled, so it’s not safe. Mouthwash is another one. Unless it’s made with a gluten-free alcohol, it’s dangerous. Is dining in restaurants a problem? There are a lot of things that people don't realize when dining out. Until you’re sitting in front of a chef and you see him put your corn tortillas in the same oil in which he is making flour flautas, you don't realize, Oh, the corn chips are probably not safe here. Also, some restaurants tell me that I can't have the steamed broccoli because it’s legal to take old pasta water and pour it on top of someone's broccoli. One time I had them put mustard on my potatoes and grill them and the mustard wasn’t gluten-free. It contained non-distilled vinegar. How do you handle summer barbecues? You take your life in your hands when you go to a barbecue. But you can help by bringing your own food. Bring the corn and make some other great recipe. Sometimes, I’ll eat before I go places. Where should people with symptoms of celiac disease go to learn more about it? The National Foundation for Celiac Disease and the Celiac Disease Foundation are both really great [organizations]. I learned a lot from Peter Green, M.D., the director of the Celiac Disease Center at Columbia University. He has a book [Celiac Disease: A Hidden Epidemic (William Morris)]. For more information, visit our Autoimmune Disorders Health Center and Gluten-Free Eating Guide.