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Here is the last article on this that was sent to me....
Jennifer

3) Studies estimate that the number of celiacs who follow a strict
gluten-free diet ranges between 30-40%. We receive a number of calls from
people with
celiac disease who don't quite follow the gluten-free diet. Others have a
hard time understanding why they need to follow the diet when they were
asymptomatic to begin with. Then we hear from worried parents, scared that
they may have given something to their toddler with celiac disease that
caused familiar gluten-reaction symptoms.

While some gluten ingestion in people with celiac disease is intentional,
others ingest gluten accidentally or cause another to do so. When an
individual calls the University of Chicago Celiac Disease Program, we try to
assess the reason behind the gluten ingestion, and often find that it is the
result of a lack of access to a knowledgeable dietitian at the time of
diagnosis (Often, this is found when a caller articulates that they were
unaware of problems like cross-contamination, the gluten-content of
medications or they needed to ask more questions when eating out at a
restaurant). Fortunately, this is a relatively easy problem to remedy. We
offer referrals and dietary resources, and will send our care package to
those who require it.

Others callers choose not to follow the diet, or to allow themselves
"rewards" on special occasions or when they feel stressed. We often hear
from people who prepare gluten-containing meals for the rest of their family
which they cannot resist, or they eat the meal because they are not willing
to prepare themselves a gluten-free meal. Some who travel on business do not
wish to call attention to their dietary needs in front of their boss or
colleagues. Sometimes, all that is required is guidance regarding how to
place an order in a restaurant, how to prepare ahead of time for a business
breakfast, or meal preparation tips.

All of the people who call our program regarding their gluten ingestion,
regardless of their circumstance, are motivated by fear. Parents often talk
about their fear of poisoning their child. Some adults eat very little due
to fear of gluten contamination. While it seems of the utmost importance to
establish the medical need for a strict gluten-free diet, psychologists and
others would probably agree that human beings are seldom motivated to adopt
life-long behaviors out of fear.

It seems fair to take a brief look at what we know, and what we don't know
about the need to follow a 100% gluten-free diet, in order to replace fear
with knowledge.

First, it is important to examine how a research study would be designed to
measure the effect of minimal gluten ingestion (i.e., the purposeful or
unintentional consumption of gluten) in a group of individuals with celiac
disease.

In order to test this question, we would need a group of people with celiac
disease to knowingly or unknowingly ingest gluten. People with celiac
disease who already ingest gluten would not be eligible because they would
bias the result. So a randomly selected group of celiacs would be needed to
participate in the study. These individuals would need to eat gluten in
small amounts and be followed for five, ten or more years. Then, any results
would need to be confirmed in other randomly selected groups of celiacs to
rule out any effect of disease status, age, gender, geography, dietitian
instruction, etc.

Here's the catch-even if it were theoretically possible to obtain a group of
people to knowingly participate in studies, the studies would never be
approved based on ethical grounds. Hospitals that conduct studies and the
physicians who run them are governed by a code of ethics that does not
permit a patient to receive a procedure or be exposed to any type of
intervention that is known to be harmful to them.

So, the question is, how do we determine, in a less direct way, "Studies
estimate that the number of celiacs who follow a strict gluten-free
diet ranges between 30-40%" the effect of gluten ingestion in people with
celiac disease?

Professor Giovanni Corrao and colleagues attempted to address this question
through a prospective cohort study which enrolled 1,072 patients between
1962 and 1994. The study was designed to measure important factors that
influenced mortality in people with celiac disease and their immediate
relatives.

The study, published in the Lancet in 2001, found that mortality in people
with celiac disease was most significantly affected by diagnostic delay,
pattern of presentation, and adherence to the gluten free diet. A delay in
diagnosis of more than one year and a severe presentation of celiac disease
at diagnosis doubled the observed deaths during the study. Non-adherence to
the gluten-free diet, defined as eating gluten once a month or more,
increased the relative risk of death six-fold. These factors were highly
statistically significant.

There are limitations to this study, however, including the fact that people
diagnosed in the 1960's were more likely to present with a severe case of
celiac disease, including intestinal lymphoma. Researchers also found that
people with mild or symptomless celiac disease had a slightly increased risk
of death; it's also likely that these people were diagnosed later on in the
study when more screenings were available, decreasing the length of the
delay in diagnosis.

Alessandro Ventura and colleagues conducted an important study on the
presence of autoimmune disorders in people with celiac disease. Published in
1999 in the journal Gastroenterology, these researchers recruited 909
patients with celiac disease, as well as 1,268 healthy controls and 163
patients with Crohn's disease. The results were dramatic, and highly
statistically significant.

Ventura found that the risk for developing other autoimmune disorders
increased relative to the age of the person with celiac disease at
diagnosis. For instance, a child that is 2 years of age has a 5% chance of
developing another autoimmune disorder, but a person over 20 years of age at
diagnosis has a 34% chance. Ventura and his colleagues equated the age of a
celiac at diagnosis with the number of years that individual had been
exposed to gluten, and postulated that the increasing risk was related to
gluten exposure. Other researchers have reported results for and against
Ventura's claim, but a consensus has yet to be reached.

Osteoporosis and osteopenia studies have almost consistently supported the
benefit of a strict gluten-free diet in rebuilding bone mass, even in
post-menopausal women and patients with incomplete mucosal recovery.
Researchers note, however, that the diagnosis should be made early and the
diet followed strictly.

 Scott-Free . Summer 2003 . Subscribe at www.Celiac.com

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