Living With Celiac Disease
It was 2005. Food was hot. The entire country was talking, watching, reading and thinking about food. Food had become our national pastime with the Food Network leading the way. It was as if we had discovered food for the first time. Our national conscience was shifting, and food was at its center. I realized there was a void in the food discussion. No one was talking about gluten-free food. Now, I talk about gluten-free food everyday as I have celiac disease and I must be on a strict gluten-free diet. However, the rest of the country did not have the slightest clue what gluten was, and more than that, they had never heard of one of the major reasons Americans are on gluten-free diets, celiac disease.
As a celiac, I realized something had to be done, and since food had become a visual experience in this country, I thought the best way to introduce celiac into the dialogue was to document the disease and the gluten-free diet. I quickly realized that to document the disease was not enough. Having celiac disease was more than just having a disease that required a strict gluten-free diet. It meant being part of a community of people who had the same disease, who thought the same way, and who had the same goals for themselves and their children: to push for awareness and education so being a celiac would be easier in this country.
The celiac community was very much under the radar in 2005, and even more so when I was diagnosed in 2000. However, something does not have to be on the radar for amazing things to be happening. Celiacs in this country were leading a grassroots movement, one that had started years before I was diagnosed, to get celiac disease on the map. They were true pioneers and they were pushing for awareness, education, and to make gluten-free foods more accessible. They saw a need and they met it. They took a diagnosis and did something with it.
I think being exposed to this dynamic community and meeting such motivated, talented, hardworking people, showed me the power of this community. Being around these incredible people also pushed me to get involved, and I learned first hand what it meant to raise awareness and believe in something much larger than myself. I think getting to know the community so close to my diagnosis, and learning what motivated them, primed me for the moment in 2005 when I realized how important it was to document the celiac story. I knew how special the celiac community was, and I wanted to share the beauty I saw in it with others. I believed sharing this community and our common bond, would help bring celiac into the national dialogue.
What started out as a desire to document and share information on celiac disease and gluten-free foods became my documentary Generation Gluten-Free. Generation Gluten-Free is achieving my goal of helping to bring celiac and gluten-free foods into the national dialogue. Within the celiac community, it is used as a tool to help people feel positive about having celiac disease, especially newly diagnosed celiacs and their families. Outside of the community, it is getting into the hands of those in need of education: doctors who are not well informed about celiac, doctors who do not believe that the range of symptoms is so wide, pediatricians who often are the first to miss the diagnosis, teachers so they can learn more about the disease and the community, nutritionists to educate themselves and share with patients, camp directors, and to colleges.
What Is Celiac Disease?
Celiac disease is an autoimmune disease that is the result of an intolerance to gluten, a protein found in wheat, rye, and barley that affects nearly 1% of people in this country. Although quite common, 97% of the celiac population in this country is misdiagnosed or undiagnosed.
When individuals with celiac disease consume gluten, the body has an autoimmune response where the villi in the small intestine – finger-like projections responsible for absorbing nutrients – are attacked. When the villi are attacked, the body is unable to absorb nutrients, leading to malabsorption and malnutrition.
Celiac disease has an extremely wide spectrum of symptoms and there is no one symptom a person must have to be diagnosed. The fact that the spectrum is so wide makes it difficult to diagnose, as many doctors are only trained to look for “classic” gastrointestinal symptoms. However, even then, many physicians fail to test for celiac and jump to the irritable bowel syndrome diagnosis or say you have a sensitive stomach. Here are just a few of the symptoms: being asymptomatic, upset stomach, constipation, vomiting, diarrhea, symptoms that mimic irritable bowel syndrome (IBS), failure to thrive in children, short stature in children, missing tooth enamel (dental enamel defects), neurological symptoms including migraines, bone fractures, osteopenia, osteoporosis, rheumatoid arthritis, vitamin deficiencies, anemia, thyroid problems, infertility, miscarriages, and difficulty concentrating. There is a skin manifestation of celiac known as Dermatitis herpetiformis (DH), which presents as watery, itchy blisters on the body.
Undiagnosed and untreated celiac disease is serious and increases a person’s risk for other autoimmune diseases, and in the long term, cancer. Celiac disease is diagnosed through a blood test and a biopsy of the small intestine. It is very important not to put yourself or your child on a gluten-free diet until being formally tested. Going gluten-free before the test can skew the results and make it difficult to have an accurate diagnosis. If your doctor is unwilling to test you/your child, find a doctor who will. Do not give up. It is very important to get the confirmation before making the dietary and lifestyle changes. There is one and only one treatment for celiac, a strict gluten-free diet. By removing all gluten, a person can help to heal themselves and live a healthy, normal life. Celiac disease is a genetic disease and therefore if one person in a family has it, all immediate relatives should be tested whether or not they show symptoms.
It is important to note that a person can be gluten-intolerant, but not have celiac disease. A gluten-intolerant individual does not have celiac, but has a reaction to eating gluten and benefits from a gluten-free diet. As with celiac, it is very important to consult a doctor. A diagnosis of gluten-intolerance requires ruling out celiac.
Where do I fit in with the spectrum of symptoms?
When I was diagnosed in 2000 at almost 14, I was not overtly symptomatic. I felt fine and it was not affecting my day-to-day life. I was tested for celiac because 3 of my immediate relatives have celiac, and since it is genetic, my mom thought it would be a good idea for me to be tested. My blood test results were off the charts. I was, without a doubt, a celiac. A biopsy was done on my small intestine, not so much to confirm the diagnosis, and to see how much damage had been done, and boy!, had a lot been going on. I was flat, which meant I had no villi and was unable to absorb nutrients. This was surprising given my lack of symptoms. However, celiac does not need symptoms for damage to be done.
For a long time, I considered myself to be asymptomatic, but I do not anymore. I was short, scrawny, and I had missing dental enamel. Had my mom not tested me, I would have gone under the radar for a long time.
What is a strict gluten-free diet?
When I was first diagnosed, I was a bit angry and confused. However, I quickly realized that if I wanted to grow and reach my potential, I needed to follow a strict gluten-free diet. The easy part of a strict gluten-free diet is that fruits, vegetables, meat, poultry, fish, and most dairy products are naturally gluten-free. Beyond that, there is now a huge selection of gluten-free products that satisfy every craving. The tricky part is that gluten is not just in breads, pastas, cereals, cakes and cookies. It is used in sauces as a thickener. It can be dusted on chicken, fish or meat at a restaurant to prevent it from sticking. Regular soy sauce has wheat in it and a celiac must have gluten-free soy sauce. Being gluten-free is not just about avoiding gluten, it means always being vigilant and thinking about cross-contamination as it takes the tiniest amount of gluten for a celiac to have a reaction. Cross-contamination is as simple as dipping a knife into peanut butter and spreading it on bread and then a celiac using that same peanut butter for their gluten-free bread. It can mean sticking gluten-free toast into a toaster and picking up gluten crumbs. It can also be the use of pasta water to steam vegetables, which is quite common in restaurants.
The ultimate cross contamination is a fryer in a restaurant. Sure the fries are just potatoes, but then they go in the fryer that also cooks the wheat battered onion rings and chicken fingers. In that fryer, the potatoes become contaminated. Being a celiac means having your own peanut butter and your own toaster. It means asking your friends to please not stick their gluten fingers into your gluten-free bag of chips. It means always asking: is something dusted with flour, is it prepared on the same surface as gluten, do you steam with clean water, do you fry in the same oil as gluten. This may sound neurotic, but this is what a strict gluten-free diet means. It takes time to adjust to, but in no time, a celiac can become a pro, especially with so many gluten-free products to choose from on supermarket shelves. When it is your health or your child’s heath, you will do whatever it takes and gain the confidence to speak up at work, school, restaurants, and even before attending parties.
Susan Cohen is the Director of Generation Gluten-Free: A Documentary on Celiac Disease. She has spoken nationally on celiac disease and can be found on twitter @susanecohen. To watch a trailer and learn more about the film, visit www.generationglutenfree.com.
