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The Patients' Perspective of Celiac Disease
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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."
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