What You Should Know:
Patricia Harty talks to Peter Green, Director Celiac Disease Center at Columbia University about this disease that’s common to the Irish.
Celiac disease has been Dr. Peter Green’s focus for almost 20 years, with equal concentration on patient care and research. He is one of the few physicians in the United States with an intense clinical academic interest and expertise in the disease, and is the author of Celiac Disease: A Hidden Epidemic, which has been called “the definitive resource for celiacs and those yet to be diagnosed.”
Dr. Green first came to my attention when I read an article he had written on how JFK’s medical problems could have been caused by celiac disease. On speaking to Dr. Green, I learned that he had treated Frank McCourt, the Irish writer who died of complications related to melanoma, and that patients with celiac disease have an increased risk of melanoma, and other autoimmune diseases.
What is celiac disease?
Celiac disease is caused by ingestion of gluten, which is the main protein component of wheat and related cereals, rye, and barley. The small intestine develops villous atrophy that results in difficulties in the absorption of nutrients. In Kennedy’s case, his problems started in childhood. He had gastrointestinal symptoms, weight and growth problems as well as fatigue, and later in life, he suffered from abdominal pain, diarrhea, weight loss, osteoporosis, migraine, and Addison’s disease. While it’s not clear that his physicians obtained a definite diagnosis, a review of his medical history raised the possibility that he had celiac disease.
Why is it that the disease often goes undiagnosed?
The greatest problem is physician awareness. There was a lot of research on celiac disease in the sixties but then it fell away, and that is probably related to the pharmaceutical industry having such a major role in the direction of health care in this country – the bulk of medical research is driven by pharmaceutical industry interest, so there was not much taught [in medical schools] because the educators were not working on celiac disease. The American College of Physicians have not had celiac disease on their educational program at their annual meeting for as long as we look back.
The rate of diagnosis can be improved by more research, leading to more publications, leading to more education of physicians. The pharmaceutical industry is now getting involved and there are some drugs that are now in Phase 2.
The latest figures show that only 17 percent of those with celiac disease in this country are currently aware that they have it, and that would suggest that physicians are not making proper diagnosis. There’s a study in Finland that says the rate of diagnosis of celiac goes up when you educate the doctors.
Does celiac have a relationship with other autoimmune diseases?
Yes, and it’s a bit unclear what the mechanism of the association is – whether there’s an autoimmune connection – a genetic connection – or if it’s related to the fact that having celiac increases the risk of having other autoimmune conditions. There was a study done in Italy that showed that the earlier the rate of diagnosis in age the less chance of getting other autoimmune conditions and then another study in France that shows that if, after diagnosis, people are strict with the diet there is less likelihood of them getting more autoimmune conditions.
There’s also a suggestion that people who have Hemochromatosis (known as the Celtic Curse, the disease that causes the body to absorb too much iron) have more celiac disease because the celiac disease is protective of the damaging effects of Hemochromatosis. So evolutionary wise they may run along together.
Some claim that there is an association between celiac disease and schizophrenia. Is that true?
There is some association with celiac disease but it’s hard to know how much that relates to each individual patient with both but it does appear to be related.
So who should be tested?
Those showing symptoms. Irritable bowel type symptoms or fatigue or if they get diagnosed with amentia or osteoporosis or unusual neurological symptoms, or if a patient has low cholesterol then you should suspect celiac – especially low HDL, they should ask to be tested for celiac and typically if the doctor says, you can’t have that because you are too fat or too tall or something, patients should say, “I want to be tested please,” because doctors often say that because they are not aware.
What peaked your interest in the disease?
I diagnosed a lot more patients than my colleagues because I had learned about it in Australia where we were told in medical school that it was common – but people here in the U.S. thought it wasn’t very common so naturally I seemed to diagnose a lot more than other doctors. And I like doing research so seeing a lot of patients led to more research in that area. And the demand for patients to be seen led to us bring in more doctors to see them so [the center] has grown quite exponentially.
Is there a cure?
Diet can wholly reverse the damage and on a gluten free diet all the abnormalities can go back to normal. So that is the treatment. There isn’t any other treatment available. There are some medications that are being developed but they are going to take a while.
Do patients find the gluten free diet hard to adjust to?
I think there’s a lot of difficulty when people get diagnosed. They can get anxious – and angry and get depressed. It’s a pretty big deal because you have to learn what not to eat but also what to eat and that probably is the more difficult thing to do because you can easily learn not what to eat but you have to be able to substitute nutritious foods. We have a very experienced dietitian here and in addition to cooking classes we offer nutrition strategies for finding enjoyable food alternatives.
What about alcohol. Is it allowed?
Distilled liquor is fine, but beer is not distilled, it is brewed from barley hops, so unless it is brewed from sorghum or something like that – it’s got gluten so people with celiac shouldn’t have it.
For more information on celiac disease visit: celiacdiseasecenter.columbia.edu