<<Disclaimer: Verify this information before applying it to your situation.>> The Patients' Perspective of Celiac Disease ------------------------------------------- by Peter Green, MD summarized by Sue Goldstein [Dr. Peter Green spoke at the Westchester (NY) Celiac Conference Day, Sept. 21, 1997. His talk was based in part on a patient survey he conducted this year and presented at the American College of Gastroenterology meeting in Chicago last fall. This talk was summarized in the Westchester Celiac Sprue Support Group's Oct. 1997 newsletter. Enclosed here are excerpts from that summary.--ed.] The idea for this survey was prompted by recognition of the underdiagnosis of CD in the USA. In Australia where Dr. Green trained, a CD diagnosis was considered quite frequently. He found it surprising that physicians in the USA either didn't consider the diagnosis of CD, or waited to make a diagnosis until there was a totally flat biopsy. The patient survey consisted of about 100 questions. It was e-mailed to the Celiac list on the internet, inserted in celiac newsletters, and distributed at celiac support group meetings. Over 1,600 completed surveys were returned, with nearly all of them from the USA or Canada. Only those surveys from CD patients over 17 years old were analyzed for this study, so an adult population could be sampled. The age range was 18-92, with the average 53. The ratio of females to males was 2.7:1. About 75% were biopsy-proven celiacs. Only about a third of the non biopsy-proven were self-diagnosed. The biopsy-proven patients had symptoms for an average of 11 years prior to diagnosis. 19% had relatives also diagnosed with CD. 85% presented with diarrhea as a symptom, so the survey reflects people who have clinically-evident, classical CD according to Dr. Green. Only 54% thought their diagnosis was prompt. About 70% had consulted 2-5 physicians prior to diagnosis, and another 15% consulted more than 5. The diagnosis was usually made by a gastroenterologist to whom the patient had been referred, and about 70% saw only one gastroenterologist. 20% thought their diagnosing physician was not knowledgeable about diagnosis, 32% felt their physician was not knowledgeable about treatment, and 51% thought their physician was not knowledgeable about follow-up care. Patients were asked what associated diseases had been diagnosed. Osteoporosis was claimed to be present in only 18%, which Dr. Green considers a gross underestimate as his experience has been that the bones of celiac patients are almost never normal. 20% of the respondents stated they have some form of thyroid disease, which is a sharp contrast to a study in England suggesting the incidence of thyroid disease in the general population to be about 1%. Dr. Green feels this reflects the association between thyroid disease and CD. 10% of the respondents had dermatitis herpetiformis (DH). Other associated diseases included type I diabetes (3%), Sjogren's syndrome (2%), and lymphoma (1%). In questions about diet, 95% reported they were advised to go on a gluten-free (GF) diet. 94% were advised to remain on it for the rest of their lives. 68% reported that they were always compliant in following the GF diet and 30% said they were most of the time. Lapses were almost always at restaurants. 22% also follow a lactose-free diet, and 21% follow various other diets in addition to being GF. 77% reported an improved quality of life after diagnosis. There was an average increase in the body mass index (BMI) of 18%, which still isn't up to normal. Those who had not had a biopsy had an average BMI increase of 9%. Regarding follow-up care: 36% had a repeat biopsy while on the GF diet, 26% had bone mineral densitometry performed, and 66% had been referred to a nutritionist. Only 15% of the people reported that their first-degree relatives were screened for CD. The bulk of the respondents reported that they got the most information about CD from support groups. Dr. Green concluded his remarks by returning to the topic of CD and osteoporosis. He said, "I was very interested that only 26% of the biopsy-proven patients had bone mineral densitometry performed, and that a lot of these patients reported having normal results." He cited a study from Italy which shows that all untreated celiacs have either osteoporosis or osteopenia. Even treated celiacs still didn't have normal bones. "I think you can get your bones up towards normal with a proper dosage of calcium and vitamin D, but bone mass will still be below that of the general population. Patients who present with osteoporosis are a good group to screen for CD. A study from Scandinavia reported on 90 patients with osteoporosis who didn't have any indication of malabsorption in their calcium studies. Of those 90, 3% were shown to have CD that was unsuspected, so that's a fairly important source of unsuspected CD."