For over ten years, the Celiac Disease Center at Columbia University has been on the forefront of celiac disease research in the U.S. The director of the Center and Professor of Clinical Medicine, Peter H. R. Green, MD, has devoted equal amounts of time to research and patient treatment. In fact, people from around the world travel to New York to seek help from the wonderful gastroenterologists at Columbia University’s Celiac Disease Center. Recently, Dr. Green took the time to answer some of our questions about celiac disease as it affects Americans as well as people in other nations around the world.

DGF: Why is it still difficult to get doctors in the U.S. to consider that celiac disease could be the culprit making patients sick—especially the ones with IBS symptoms that don’t resolve with IBS treatments?

Dr. Green: There are a couple of reasons, actually. Most doctors here are not prominently taught about celiac disease in medical school or in post-graduate education. The latter is often funded by big pharmaceutical companies, and none of them presently offer a medication to treat celiac disease. We really can’t blame the doctors totally because most of them are not going to look for something in their patients that they were taught is extremely rare. Of course, celiac disease is not rare at all, but many doctors still think that it is.

DGF: Researchers now know that there is such a condition as non-celiac gluten sensitivity. Is there a way to diagnose that condition?

Dr. Green: Like patients with celiac disease, patients with gluten sensitivity can have gluten antibodies which indicate they have issues with the protein. Some of them go on to have normal biopsies, so they are not given a celiac diagnosis. There is a concern that some of those patients don’t have proper biopsies performed; many doctors take only two samples from the intestine when looking for villi damage (which celiac causes), whereas four or more samples are needed for an accurate diagnosis. It’s been shown that taking four samples will double the rate of diagnosis in celiac patients. Another problem is that not all pathologists know how to properly read the biopsy slides submitted for evaluation. Thus, some patients with celiac are labeled as gluten-sensitive.

With gluten sensitivity patients, there is a spectrum of symptoms and manifestations. We’ve seen some people with Dermatitis Herpeteformis who have no intestinal damage. There is currently no test specifically for gluten sensitivity. If a patient’s symptoms indicate issues with gluten and tests for celiac are negative, the patient can be diagnosed as gluten-sensitive. As with celiac disease, a strict gluten-free diet is the only treatment for gluten sensitivity.

DGF: You’ve spoken before about the fact that the gluten-free diet can be devoid of some nutrients that one would get by eating a diet containing gluten. Gluten-free oats can help with that issue, but some patients with celiac can’t tolerate even certified gluten-free oats; why is that?

Dr. Green: Oats themselves are gluten-free, but commercial oats are often contaminated with gluten due to the way they are grown, stored, or transported. There have been a couple of cases in which celiac patients have had true gluten reactions from certified gluten-free oats, but most people with celiac disease can safely tolerate certified gluten-free oats. Some patients who think they’re reacting to safe oats are actually reacting to the extra fiber (from the oats), which they are not used to. Oats should be added to the gluten-free diet slowly in order to avoid symptoms that mimic those of a gluten reaction. Safe gluten-free oats can be an important part of the gluten-free diet, adding needed fiber and other nutrients not present in many of the popular gluten-free grains.

DGF: What do you see in the future regarding the treatment for celiac disease? Could the dream of a prescription medication that would allow patients to eat gluten one day be a reality?

Dr. Green: I don’t think there will be a medication that will allow people who can’t tolerate gluten to eat a normal diet. More than likely what will happen is that a drug will be developed that will help protect against cross-contamination. Such a therapy could allow people to more safely eat outside their homes, avoiding getting sick when dining out and traveling. The treatment might even prove to protect from quite a bit of gluten exposure. For instance, some naturally gluten-free foods have been found to be packed in gluten flour, and taking a medication could prove beneficial in those cases as well.

However, it is a matter of concern that some patients might start taking pills on an ongoing basis and resume eating a normal diet. That is the worrisome side to the introduction of a new drug therapy for celiac disease. In such cases, patients could cause themselves intestinal damage while the drug masked outward symptoms. Nevertheless, a new treatment for celiac disease would improve the quality of the lives of the people who have the condition. In a recent study, only 30 percent of people polled said they were not interested in taking a pill for celiac disease. That leaves 70 percent of patients waiting for such a treatment to hit the market. When any new treatment for celiac disease is available, celiac awareness in the medical community will increase, since there will be, for the pharmaceutical company that produces the drug, a benefit in educating doctors about the conditions it’s meant to treat.

DGF: The U.S. has come a long way in the last five years regarding gluten-free products and dining options for people on the gluten-free diet. Even so, many European companies are still ahead of those in this country in terms of those things and celiac awareness in general. What can the average person do to help drive change in our communities so we can catch up with countries that got a head start on us?

Dr. Green: It’s true that people with celiac in some countries have benefits offered to them through their healthcare programs. For example, in the U.K., celiac patients can have gluten-free food delivered to their homes for free, since food is the drug prescribed for their condition. In Italy, people get a couple of extra (paid) days off each year in order to shop for gluten-free food. That food is also partly subsidized by the government. These benefits are not available in the U.S. because healthcare is provided through privately owned insurance companies.

There are many things that patients can do to help increase awareness and improve the gluten-free market themselves. People should talk about the condition with friends, family members, teachers, and social workers. Also, patients need to demand appropriate medical care for their disease. They should ask their doctors what other tests they need due to their celiac condition. They can even educate their doctors about gluten-free foods, letting them know that there is much more available for patients these days than ever before. It’s a good idea for people to invite doctors and teachers to local support group meetings as well.

One of the ways people can be most helpful is to help fund celiac research in this country. Just as people run races for conditions like breast cancer, multiple sclerosis, and Crohn’s disease, so people with celiac disease can participate in such fundraising activities. This is done to a degree here, but not on a large scale. It has not been the norm for the celiac community to rally behind fundraising events. Research money is needed, and, in fact, it would make a great difference in the progress we’re making to improve the lives of people with celiac disease.

Peter H.R. Green, MD is the author of Celiac Disease: A Hidden Epidemic, now in its second printing. Visit www.celiacdiseasecenter.org for more information.