Celiac Disease: What to Know

Dr. Benjamin Lebwohl, director of clinical research at the Celiac Disease Center at NewYork-Presbyterian/Columbia University Irving Medical Center, on how to recognize the condition and treat it.

Chances are, you have gone “gluten-free” or know someone who has.

Many people have celiac disease, which is estimated to affect one in 133 Americans, or 1 percent of the population. More than half of the estimated 3 million people with celiac disease in the U.S. are thought to be undiagnosed, according to the Celiac Disease Foundation.

How do you know if you have celiac disease? And if you don’t, is a gluten-free diet a good idea? Health Matters spoke with Dr. Benjamin Lebwohl, director of clinical research at the Celiac Disease Center at NewYork-Presbyterian/Columbia University Irving Medical Center, one of only a handful of centers in the United States that focuses on celiac disease, to learn how the condition affects the body, what treatments exist, and about the latest breakthroughs in treatment.

What is celiac disease?
It’s a condition in which the immune system is activated after eating gluten, a name for proteins present in wheat, rye, and barley. The primary site of the disease is in the small intestine, but the condition can have numerous effects outside of the gastrointestinal tract.

What are the symptoms?
Most often, diarrhea and abdominal pain. Celiac disease can also cause symptoms that are a consequence of impaired absorption of nutrients, such as weight loss, anemia, or osteoporosis. But it can also cause symptoms unrelated to the intestine, such as infertility, migraine headaches, or neuropathy, which is numbness and tingling in the limbs.

Are you born with celiac disease or does it manifest as you get older?
None of us is born with celiac disease. It can develop at any age, from infancy to late in life. Some people have no trouble with gluten for many years and then suddenly develop this immune reaction to it. There is a genetic predisposition to celiac disease, and it can run in families, but there are likely environmental triggers that interact with this genetic predisposition at the onset of the disease.

How do you know if you have celiac disease? Is there a test?
There is a blood test to measure certain antibodies. People with elevated levels of these antibodies typically then undergo a small intestinal biopsy during an upper endoscopy, a procedure that involves inserting a flexible tube to look inside the upper digestive tract.

Dr. Benjamin Lebwohl

What is the difference between celiac disease and gluten sensitivity?
Some people who report symptoms that get worse after eating gluten will improve on a gluten-free diet, but they test negative for celiac disease. Such patients are said to have non-celiac gluten sensitivity. At present, there are no tests to confirm this sensitivity. Instead, it is a diagnosis of exclusion. Our research group has found that some of these patients exhibit an overactive immune system when eating gluten. But many questions remain unanswered about non-celiac gluten sensitivity’s cause and natural history.

Does celiac disease last a lifetime or can it go away in some cases?
In general, it is a lifelong condition. There have been rare instances of people regaining tolerance to gluten, typically after a short period of having celiac disease, but the vast majority of people with celiac disease do not “grow out of it.” That said, given the intensive research into non-dietary therapies for celiac disease, perhaps future breakthroughs will allow patients to eat a regular diet, gluten and all.

What constitutes a gluten-free diet?
Strict avoidance of wheat, rye, and barley. While certain aspects of the diet are straightforward, hidden sources of gluten, for example in soy sauce, require education and vigilance. Patients and food preparers need to know about cross-contamination, which can occur when, for example, gluten-free pasta is prepared in a pasta pot using the same water as a batch of regular pasta.

Is it healthy to eat a gluten-free diet when you don’t have celiac disease or gluten sensitivity?
The gluten-free diet, while essential for people with celiac disease, is not intrinsically healthy or unhealthy. If a gluten-free diet is rich in refined grains and processed foods and low in fiber, it can be unhealthy and lead to weight gain and other medical consequences. If a gluten-free diet is instead rich in diverse whole grains, fruits, vegetables, and lean proteins, it can be quite healthy. That said, there is no evidence that a gluten-free diet benefits a person who does not have celiac disease and is looking for a diet that is generally healthy. Nor is there evidence that a gluten-free diet promotes weight loss.

The diet is not so straightforward, given the presence of gluten in trace amounts in a variety of foods and misinformation online regarding which foods are safe and which are not. While the majority of patients with celiac disease improve after starting the diet, between 20 and 25 percent have persistent or recurrent symptoms, which can be due to a variety of reasons, not just inadvertent gluten exposure.

It is also important to know that once someone starts a gluten-free diet, it becomes more difficult to know if that person has celiac disease, since the celiac-related tests gradually normalize on that diet. It is therefore important to get tested for celiac disease before starting the gluten-free diet.

How does the Celiac Disease Center at NewYork-Presbyterian/Columbia University Irving Medial Center help the celiac community? What are treatment options?
The four-part mission of our center is patient care, research, education, and advocacy. We strive to provide a patient-centered approach to the evaluation and management of those who come to our center. Our dietitian has extensive expertise in celiac disease and the gluten-free diet. And our research program provides a multipronged approach to studying celiac disease, with the ultimate goal of changing our patients’ lives for the better. We have also been at the forefront of conducting clinical trials of non-dietary therapies in various stages of development.

What advice do you have for parents of a child who has celiac disease?
Growing up with celiac disease can pose special challenges, including those related to social events and the transition to college, but can also be an opportunity for self-empowerment and advocacy. Everyone’s course is unique, and the road can be bumpier for some families. Our pediatric gastroenterologists and dietitian are here to help.

What research is the center conducting to help people with celiac disease?
Our research activities range from one-time questionnaires measuring quality of life to months-long clinical trials of non-dietary therapies. We have conducted several clinical trials of non-dietary therapies, including one that is centered on digestion of gluten, and one that is meant to prevent gluten from crossing the gut barrier (where it encounters the immune system). And we are preparing for a trial of an injectable vaccine that is designed to promote tolerance of gluten by the immune system.

We are also studying the effect of gluten on the microbiome (the trillions of bacteria that populate the intestinal tract) among people with celiac disease and non-celiac gluten sensitivity. That study involves actually giving patients gluten for a short time. Such studies (that involve a “gluten challenge”) are clearly not meant for everyone but are for volunteers who are able to withstand the discomfort. It is a long-established method for studying gluten-related disorders that may be of great potential benefit to our patients.