Celiac Disease Awareness vs. Education

While it was once difficult to find information on celiac disease, not to mention palatable gluten-free food, recent years have seen a boost in awareness of the gluten-free diet, as well as an explosion in the availability of gluten-free products. To my surprise, in fact, the gluten-free diet now seems to be en vogue. I’m not sure, though, that this has as much to do with celiac disease awareness as it has to do with awareness of celebrity lifestyles. The fact that, for whatever reasons, a number of celebrities have adopted the gluten-free diet—the same diet that also happens to be required to control celiac disease—has certainly boosted awareness of the diet. But how many people who now know about the gluten-free diet are aware that this diet is a life-saving necessity for millions of people around the world who suffer from an incurable autoimmune disease?

I’ve spent a lot of time thinking about whether or not the recent trending of the gluten-free diet is a good or bad thing for those with celiac disease. Whenever something reaches the level of a “fad,” it is bound to lose credibility. Would the trendy status of the gluten-free diet reduce the credibility of the diet to the point that people wouldn’t take it seriously? This would be disastrous for those with celiac disease, for whom a single breadcrumb may trigger an internal attack, causing unknown levels of destruction to the digestive system and potentially setting in motion a domino effect of damage throughout the rest of the body.

On the other hand, I considered, what if people weren’t aware of the gluten-free diet at all? When I was diagnosed with celiac disease in 2002, I sent an email to as many chain restaurants as I could think of to ask if they would be able to provide any gluten-free menu items. One-by-one the majority of responses came back with their own versions of “I’m sorry, but we cannot guarantee ….” Today, every one of those restaurants will, at the very least, make an attempt to accommodate gluten-free dietary requirements. Some do better than others, but the point is, they are aware.

At the end of my internal, philosophical battle to assign a status of good or evil to the new gluten-free diet fad, I decided to throw those labels out the window. For better or worse, awareness of the gluten-free diet is growing. For some, the diet is a lifestyle choice. For others, it is a lifestyle requirement. Those of us with knowledge of celiac disease have an opportunity to build on that awareness, regardless of how or why it exists. Awareness of the gluten-free lifestyle is only step one. Now it’s time to move on to step two—education.

Celiac Disease in a Gluten-Free Nutshell

A brief history

The condition now known as celiac disease has been recognized for centuries, but its cause was not confirmed until a Dutch pediatrician named Willem-Karel Dicke made several acute observations at the tail end of WWII. By that point in time, food staples like bread had become scarce, but instead of fading, children with celiac disease seemed to thrive. When bread was finally delivered by allied forces, those same children deteriorated rapidly. Several years later, Dicke and his colleagues went on to successfully identify and document the role of gluten in celiac disease.
(Source: http://www.celiacdisease.net/assets/pdf/SU07CeliacCtr.News.pdf)

What is celiac disease?

Celiac disease is a genetic autoimmune disease triggered by certain proteins, commonly referred to as gluten, found in all forms of wheat, as well as barley, and rye. When a person with celiac disease consumes gluten, his or her immune system attacks and damages the small intestine, decreasing the body’s ability to absorb nutrients. Over time, this can lead to a plethora of complications and associated disorders including other autoimmune diseases, osteoporosis, infertility, neurological disorders, and even cancer. This is not an allergy; it is an autoimmune disorder. It is not possible to grow out of celiac disease. Sources of gluten may be difficult to detect, as gluten is used as a binding agent in medication, a thickening agent in processed foods like soup, an anti-caking agent in spices and seasonings, and a flavoring agent in salad dressings and marinades, to list just a few examples. Current U.S. laws do not require that product labels indicate the presence of gluten.
(Source: http://www.csaceliacs.info/diagnosis_of_celiac_disease.jsp)

How does a person develop celiac disease?

Celiac disease is inherited. In other words, one has to possess certain genes for celiac disease to develop. A person with a relative who has celiac disease is much more likely to also have the disease than a person who does not have a relative with celiac disease. It is also thought that a third factor may be involved. A person, for example, who regularly consumes gluten and is genetically predisposed for celiac disease may not actually develop the disease if an environmental trigger does not occur to activate it. This trigger varies individually and may include a variety of physically or emotionally stressful situations like surgery, puberty, pregnancy, or even a virus.
(Source: http://www.csaceliacs.info/celiac_disease_defined.jsp)

How common is celiac disease?

The Celiac Sprue Association calls celiac disease “the most common genetic autoimmune disease in the world” making it “more common than lupus, rheumatoid arthritis, multiple sclerosis, epilepsy, Parkinson’s disease, Crohn’s disease or cystic fibrosis.” The most common estimate based on multiple large-scale studies indicates that 1 out of every 133 people in the U.S. has celiac disease, but only about 3% of those people have been diagnosed. This means that most people with celiac disease in the U.S.—more than 2 million individuals—don’t even know they have it.
(Source: http://www.csaceliacs.info/celiacdiseasefacts.jsp & http://www.celiacdisease.net/)

What are the symptoms?

Symptoms of celiac disease vary widely and often mimic those of many other conditions. Some people with celiac disease don’t experience any symptoms at all, while others experience symptoms like weight loss and/or weight gain, fatigue, abdominal cramping, diarrhea and/or constipation, weakness, migraines, numbness in extremities, brain fog, anemia, depression, and a veritable slew of others. With more than 300 associated signs and conditions, there is no typical symptom list for celiac disease.
(Source: http://www.csaceliacs.info/symptoms_of_celiac_disease.jsp & http://www.csaceliacs.info/celiacdiseasefacts.jsp)

How is it diagnosed?

Diagnosis for celiac disease is a three-step process involving blood tests, a biopsy of the small intestine, and a positive response to the gluten-free diet. Adopting a gluten-free diet prior to medical diagnosis is not recommended as this can reduce future success of an accurate and timely diagnosis.
(Source: http://www.csaceliacs.info/diagnosis_of_celiac_disease.jsp)

Is there a cure?

Though there is no known cure for celiac disease, there is one very effective treatment which can reverse damage and reduce or eliminate symptoms. This treatment is the strict elimination of gluten from the diet. Once a person with celiac disease stops ingesting gluten, the small intestine often heals and can return to normal functioning after a period of time. Celiac disease is a lifelong disease, and a strict, gluten free lifestyle is the only known treatment.
(Source: http://www.csaceliacs.info/treatment_of_celiac_disease.jsp)

Additional source information:
Brief history from: http://www.celiacdisease.net/assets/pdf/SU07CeliacCtr.News.pdf
A Publication of the University of Chicago Celiac Disease Center
Summer 2007 | VOL 7 ISSUE 3
Improving Lives Through Awareness,
Education, and ResearchBy Stefano Guandalini, M.D.
Founder and Medical Director
University of Chicago Comer Children’s Hospital Chief, Pediatric Gastroenterology, Hepatology and Nutrition
Real stories of celiac disease
I also wrote a profile article detailing the experiences of two people and their celiac disease-related symptoms, diagnoses, and lifestyle adjustments. The article was published in The Centre Daily Times.

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2 Responses to “Celiac Disease Awareness vs. Education”

  1. dave says:

    Tara, this is excellent stuff. Although I’d heard of gluten intolerance, I don’t remember hearing it called “celiac disease” before I talked with you. We’d often get requests through waitrons from customers with “gluten allergies.” Cooks usually looked at each other and decided it meant no flour thickened sauces; so the chicken was dredged in flour, tossed on the grill, but never finished with a sauce. If someone with a clue pointed out the dredging, the chicken would just be rinsed with stock. There were no thoughts of contamination, and no awareness that gluten could be in spices, too. There was no maliciousness: everybody wanted to do the right thing, but few knew what that was. I hope they all caught your article.

    • tmcaimi says:

      Wow, Dave, that’s really interesting (and scary to a person like me). It’s good to have the inside perspective of someone who’s worked behind the scenes preparing food. Thanks for sharing.

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