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Prevalence of CD in the United States<1>
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by Karoly Horvath, MD
summarized by Greta De Wolf and Kersti Borysowicz
In March we held a successful blood screening, in support of research
being conducted at the University of Maryland. One of the two
co-directors of this research spoke to the group during the blood
screening. What follows are some highlights of that talk.
Dr. Karoly Horvath came to this country from Hungary in 1993 where he
had completed his degrees in medicine and PhD in the topic of Celiac
Disease. He and Dr. Alessio Fasano began the Center for Celiac
Research at the University of Maryland in Baltimore. They have been
organizing a study to estimate the prevalence of this disease in the
United States and identify those who are at risk.
At this time, there is no reliable data which summarizes or reflects
how many people in the United States have the genetic potential for
celiac disease (CD). Currently those diagnosed are only the tip of
the iceberg and they usually present with typical symptoms.
There are three factors necessary for the manifestation of CD: a
genetic predisposition; ingestion of wheat, barley, or rye; and a
specific immune response leading to antibody production and tissue
damage. [Many experts feel ingestion of oats could also be a
factor.--ed.]
The known genetic factors for CD are localized on Chromosone 6 at the
Human Leukocyte Antigen (HLA) region. This is the antigen that we
have on each of our own cells that indicates to the immune system that
a molecule belongs to the body and is not a foreign substance. There
are different configurations which scientists have classified. We
know that persons with certain classes are more prone to developing
CD. When certain wheat, barley, or rye peptides are present in
genetically-susceptible subjects, the cells of the immune system are
activated. Our macrophage cells activate other cells which either
produce antibodies or release substances which can cause damage to the
intestinal lining and tissue.
There was a research study done in which celiac patients on a
gluten-free diet (GFD) were challenged with a single dose of gluten.
Prior to and five hours after the gluten challenge, lactulose and
mannitol (sugars used to examine the leakiness of the gut) were given
to the patients. There was an increased amount of lactulose found in
the urine. This indicates that the intestine became permeable so that
the lactulose was able to pass through the intestine into the
bloodstream and then to the kidneys. Therefore, it is assumed that
other toxins can also enter the bloodstream from the intestine if the
lining has become leaky. This continuous toxin load may result in
diseases in other organs, such as the liver, thyroid gland, brain etc.
The single gluten challenge also resulted in a rapid increase in the
numbers of different immune cells in the small intestine.
Dr. Horvath discussed the "Celiac Iceberg" of symptoms. Patients who
have typical symptoms represent the tip of this iceberg. Most of
these patients will be diagnosed although significant delay may occur.
Those who are "under the water" have atypical symptoms such as
osteoporosis, diabetes, short stature, dental problems, etc. Then
there are those who have no symptoms (silent disease) but have
positive blood tests; in these individuals CD may manifest later in
life.
People who have CD without clinical symptoms may have good intestinal
compensatory mechanisms. Either the lining of the intestine repairs
itself because they don't regularly ingest gluten, or the lower part
of the intestine which is not yet damaged is able to take over the
function of the damaged upper part. Those persons with symptoms
usually have more surface of the small intestine damaged and the rest
of the intestine is not able to compensate for the decrease in the
surface area needed for food absorption.
The mortality rate for those celiacs who are not on a GFD is twice as
high as the rate for the general population. Malignancies and
autoimmune disease are responsible for this increase. It has been
proven that there is no increase in the mortality rate if celiacs stay
on a GFD. Other complications of untreated CD include short stature,
high grade T-cell lymphoma of the small intestine, carcinoma of the
mouth, esophagus, and small intestine, fibrosing lung disease, and
neurological diseases.
People who are at high risk for CD include relatives of the celiac
patients and people with selective IgA deficiency, short stature,
certain dental enamel defects, Down's syndrome, iron deficient anemia,
rheumatoid arthritis, Type I diabetes, infertility, miscarriages,
recurrent abdominal pain, irritable bowel syndrome, chronic diarrhea,
and epilepsy.
The original plan of the Center for Celiac Research was to have
regional centers throughout the United States. These centers would
have nurse practitioners who would organize screening programs and
follow the patients and their compliance to the diet. These centers
would also be the focal points for support groups. To date, in the
absence of financial support, these regional centers have not been
established.
The benefits of the celiac screening program are numerous. The most
important outcome is an earlier diagnosis and therefore less
intestinal damage. There would be federal support for the diet and
gluten free drugs. There would be an improved diet food supply.
There would be free screening of first-degree relatives. There would
be more and stronger support groups. Insurance companies would
recognize that screening for CD reduces long-term health costs.
Doctors will have more awareness. There would be more knowledge about
the protean manifestations of CD in the United States. Physicians
would be able to have their research published in various journals
which would increase public awareness.
Thus far, approximately 9000 people have been tested. New statistics
shows that 1 in 160 healthy people may have positive antiendomysium
and antigliadin antibody tests. Dr. Horvath expects that at least 1
out of 11 of the first and second degree relatives of diagnosed
celiacs will have positive antibody tests and require biopsies.
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