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Hello Everyone!
I'm here at the 10th International Celiac Disease Research Conference, in
Paris, and three days of intense meetings and reports have just concluded. I
didn't want to wait to share with you some of the most interesting and
exciting developments in celiac disease--so I'm in a cyber cafe in Paris
sending this e-mail.
First of all, many of you know that there are two main types of medical
research--work that is done in a laboratory, with test tubes and equipment,
and research that is done using human participants, called clinical
research. There were many presentations on laboratory research at this
meeting, which is a subject that tends to be pretty complicated (for me at
least!).
Laboratory Research Presentations:
Many of the presentations on this area of research were focused on answering
the following question, so neatly outlined by Dr. Fasano: How do
environmental factors (like gluten) reach the immune system (which is primed
by genetic predisposition) to cause a response (the development of disease)?
The wall of the intestine is designed to prevent this from happening, he
said.
There are many theories as to why this occurs. Some theorized that gluten
actually penetrates epithelial cells (they are the ones that line the
intestine) and come out the other side. Other researchers showed evidence
that the bonds between epithelial cells break down and opens a pathway for
gluten to enter the intestine. Interestingly, another researcher, Dr. Bana
Jabri from Princeton has focused her research on the role of immune killer
cells that are activated in celiac disease, and gliadin does not have to be
present for them to react and create celiac disease! Several researchers
discussed the toxic areas of the gliadin protein, and how they are activated
in the presence of immune molecules like IL 15. One interesting but
complicated note--in a study of numerous patients (using biopsy samples) all
of the intestinal samples recognized different toxic fragments of
gluten--meaning that there are dozens of ways that celiac disease can
develop at the cellular level.
These researchers are studying the earliest events in the body that may lead
to celiac disease. It is hoped that if we can better explain the series of
events (like a row of dominos that fall, one at a time) we can develop
treatments to stop these events and prevent celiac disease.
Did you know there was more than one kind of TTG? (Tissue Transglutaminase?)
I didn't! There is an epidermal transglutaminase that is present in
dermatitis herpetiformis...this difference may indicate why people with DH
are much more sensitive to gluten than those with celiac disease.
Clinical Research and Screening Studies:
Dr. Joe Murray presented a retrospective analysis of the incidence of celiac
disease in the county that includes Rochester, Minnesota and the Mayo
Clinic. In his analysis, which goes back decades, he found that the average
age of diagnosis is 45-64, and the incidence of celiac disease was more
common in women by 3 to 1. He found that celiac disease was more common in
this county than ulcerative colitis and more common than Type1 diabetes.
Dr. Carlo Catassi, currently in residence at the Center for Celiac Disease
Research in Baltimore but native to Italy, presented an overview of the
differences between celiacs in the United States and Europe. Some
interesting and not surprising information--Europeans are diagnosed younger
as adults (34 years of age) when compared to Americans. In Europe, children
are diagnosed on average by the age of 4, while many American children are
school-age by the time they reach a diagnosis. Surprisingly, Catassi
reported that US celiacs tend to have more diarrhea than their European
counterparts. Catassi also reported that Europeans have more "atypical"
forms of celiac disease than Americans. He presented the celiac disease
screening prevalence figures for the US: 2,121,212,000 people are projected
to have celiac disease in America. There are 140 unknown celiacs for every
diagnosed celiac in the US.
Dr. Michele Pietzak, in California, did a prevalence study of at-risk
conditions in children and found that 14% of children with iron-deficiency
anemia had celiac disease. A group in Salt Lake found that 10% of children
with Downs Syndrome had celiac disease, and the Children's Hospital of
Milwaukee found that 7% of children with type 1 diabetes have celiac
disease. This is a strong case for screening all children with these
conditions.
Speaking in reference to children, Dr. Catassi said that weaning practices
in the US and other countries are having a bigger role in the development of
celiac disease than previously thought.
Osteopathy: a South American researcher has looked at the issue of fractures
in people with silent celiac disease as compared to people with symptomatic
celiac disease. He found that people who had symptomatic celiac disease were
more likely to suffer fractures than those with silent celiac disease. In
all cases, the fractures were less severe in nature.
More confirmation with regard to bone mass deficiency in children--the
gluten-free diet alone will repair the deficit, and there is generally no
need for other medical interventions.
Another area of research concerned gluten-related ataxia (a complicated
condition that I don't fully know how to describe, but includes muscle
weakness and confusion). Overall, it was reported that 6-10% of celiac
patients may develop neurological problems (of which gluten-related ataxia
is only one). This is another case where celiacs with ataxia may produce
different antibodies (like in DH) which lead to the development of ataxia.
Most importantly, ataxia does not develop as a result of a nutrient
deficiency.
There was a great deal of information presented about autoimmune disorders,
and I want to make sure I get it right, so I'll summarize that section more
in detail (along with other topics) when I return to the office. However,
one interesting item related to children with celiac disease and their risk
for developing autoimmune disorders was presented: In a study of 74 children
diagnosed with celiac disease before the age of 5, Italian researchers found
that after 10 years, their risk of developing autoimmune disorders was no
greater than that of the general population. Yet another reason for early
intervention!
Another important area of research presented was in the area of refractory
sprue and the development of lymphomas. I'm also going to give this area a
bit more thought before I post anything, but I will reassure everyone that
the risk of lymphomas is very rare.
Ok, there's lots more to share, but this is the great stuff. I promise to
share more about the conference when I return from Paris...in the meantime,
you can e-mail me at [log in to unmask] if you have questions
(I'm back in the office June 19).
One more thing. I apologize for the incompleteness of my e-mail if any
researcher or physician finds that I have not best described their work--I'm
summarizing my notes after a very long three days of meetings and my brain
cells may be a bit disfunctional. I will clarify any information and send
abstracts to anyone who would like them, just send me your snail mail
address.
Au Revoir!
Michelle Melin-Rogovin
University of Chicago Celiac Disease Program
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