Many people wonder why I became so interested in celiac disease. In fact, it started many years ago in my medical training in Australia. We were taught that the disease was common, occurred mainly in adults, and people did not have to have diarrhea. I have merely been practicing what I learned during my excellent medical training in Australia. I needed to travel overseas to obtain further research experience with a view of returning to Australia. My research into intestinal absorption took me to Harvard Medical School in Boston and then Columbia University in New York, where I have remained.
Because of my original research interest in small intestinal function and absorption, as well as celiac disease, I diagnosed and looked after patients with celiac disease more often than my colleagues. Probably a pivotal point in my celiac disease career was in 1990 when I diagnosed celiac disease in a woman, Sue Goldstein. She subsequently started the Westchester Celiac Support Group in New York. This has since grown into a large independent support group. Sue started suggesting that patients come into New York City to see me for an opinion as to their diagnosis and management. Initially, both of us received calls from local gastroenterologists that we were stealing their patients! However, the result was that I had a large number of patients with celiac disease. This has allowed me to note variations in presentations, increase my experience with this amazing disease, get other physicians and investigators at Columbia interested in the disease, and publish research on the disease. I was surprised to become an expert in this disease. There are probably no other diseases in the United States with fewer “experts.”
I started the Celiac Disease Center at Columbia University, with the help of Sue and several other patients, with three goals in mind:
The Center has grown considerably in several years. Patients have come not only from the metropolitan New York City area, but also from all around the country and overseas as well. As a result, there has been a growth in the number of physicians, both pediatric and adult gastroenterologists, joining us to provide care for an increasing number of people. The clinical experience we have all acquired in looking after people with gluten-related problems is very great. This provides enormous benefit to those that are seen in our Center.
In addition, the other goals of the Center are being continually fulfilled. We have a multitude of research papers that highlight the clinical manifestations of the disease as well as the associated conditions and provide insights into the mechanisms of the disease. We have collaborated with leaders in the field from all over the world. This research has helped educate physicians about the disease. It is through physician education that a greater number of patients will be diagnosed and receive appropriate follow-up care. Follow-up medical care of patients with celiac disease is totally lacking in this country. All our research and educational activities have been funded by the generosity of people with celiac disease, their friends and families.
Since the opening of the Celiac Disease Center at Columbia University, research has shown that celiac disease is very common, affecting about 1 percent of the population, and led us to understand the mechanism of this very interesting and life-altering disease. Research has also led us to understand the mechanism of the associated increased rate of many other autoimmune diseases and various malignancies, all of which add a burden of health problems to those with celiac disease. Importantly, a strict G-free diet reduces the risk of the acquisition of both new autoimmune diseases and malignancies. These are great reasons for those who need it to follow a strict G-free diet, and all the more reason for reading Elisabeth’s book.
Many people worldwide have adopted a G-free diet. This diet may be lifesaving to those with celiac disease, while others simply find their lives much more comfortable, having found their neurological or gastrointestinal symptoms improved since adopting a G-free lifestyle. Those with dermatitis herpetiformis find their lives now tolerable. Children with autism may improve on a G-free diet, though more scientific studies need to be performed on this topic.
I first met Elisabeth when she came to see me as a patient. She had self-diagnosed celiac disease. We see this often. Usually patients have exhausted their medical providers searching for an answer as to why they feel so terrible. They either look up their symptoms on the Internet or get advice from friends. They work it out! A G-free diet resolves symptoms and restores their health.
In this setting, it can be pretty clear whether someone does or could have celiac disease. Evidence includes the presence of the necessary genes, and usually some evidence of residual vitamin or mineral deficiency. Frequently we find other family members have the disease, further confirming that the original patient was correct. Elisabeth wanted to know about what vitamins she should be taking and about whether her daughter, Grace, and her parents should be tested. People who self-diagnose and treat will usually have normal blood tests for the celiac antibodies, and a normal biopsy, because they have been on the G-free diet for greater than a year.
Those with gluten sensitivity in the absence of celiac disease have a great difficulty getting satisfaction from the medical community. Without an abnormal biopsy, there is difficulty among many physicians accepting such a diagnosis. I, however, regard the diagnosis as valid, providing that celiac disease is excluded. Many of those who have adopted a G-free diet have not had celiac disease excluded. Their self-diagnosis of IBS or gluten sensitivity may, in fact, represent undiagnosed celiac disease.
To understand celiac disease, we need to understand what happens when we (all of us) eat grains containing gluten, the protein component of the cereal grains wheat, rye, and barley. Compared to meat protein, our digestive enzymes cannot digest or degrade gluten protein into its building blocks, the amino acids. It is these larger molecules that exist in all our intestines that are toxic to those that get celiac disease. These molecules enter the lining of the small intestine, probably during gastrointestinal infections, and react with the immune system, causing inflammation. The inflammation causes intestinal villi to atrophy. Instead of the intestine looking like a shag carpet with many little fingers or villi waving in the breeze, it looks more like a regular flat carpet. As a result of the villous atrophy, absorption is reduced. The inflammation results in the release of antibodies and inflammatory proteins into the circulation, affecting the function of many other organs and causing generalized symptoms such as fatigue.
We understand much about why people have celiac disease, but little about nonceliac gluten sensitivity. Probably there is more insight into why people get celiac disease than there is about the other autoimmune conditions. We have as yet to work out why gluten makes others sick in the absence of celiac disease.
The major issue facing us is the underdiagnosis of celiac disease. Underdiagnosis of celiac disease occurs throughout the world. It is, however, most marked in the United States, where it is estimated that less than 5 percent of those with the disease are currently diagnosed. This compares with many countries where awareness of the disease is great. Examples include Finland, where 70 percent of those with the disease are diagnosed. Awareness is great in Australia, Ireland, Italy, and many countries of South America. Great awareness of this disease and gluten sensitivity among the general populations results in an easier life for those on a G-free diet, ready understanding, and easy availability.
Our research has shown that patients may have a long duration of symptoms prior to diagnosis. This includes both children and adults. The delay is not due to the patients failing to seek health care; it is due to physicians failing to consider the diagnosis. This comes down to a failure of physician education on the subject. Generally physicians are not aware of how common the disease actually is, or the best way to diagnose it. Why is this problem exacerbated in the United States? One likely reason is that the pharmaceutical industry has great sway over the direction of medical care in the United States, being responsible for the majority of both medical research and medical education. Celiac disease has received little attention from the pharmaceutical industry because the therapy is dietary, and as a result, until recently there has been little interest in the disease from among the university-based academic centers. However, this is changing. Not only are there a few university-based celiac centers, but there is interest from the pharmaceutical industry as well.
The G-free diet is necessary for those with celiac disease. It prevents the development of symptoms and reverses them when present. The G-free diet improves the quality of life of those with celiac disease and has been shown to reverse osteoporosis, improve the cardiovascular risk profile, reduce the development of autoimmune disease, and prevent the development of cancer in celiac disease patients. For those with gluten sensitivity, the benefits are comfort! All of these are great reasons to eagerly adopt the G-free lifestyle. Read the book and enjoy the diet!
Peter Green, MD
Professor of Clinical Medicine
Director of the Celiac Disease Center
Columbia University
New York