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From an oral report by Dr. Murray; transcribed for the list by Ann
Whelan, editor of the bi-monthly newsletter "Gluten-Free Living".
To subscribe, write to P.O. Box 105, Hastings-on-Hudson, NY 10706.
DAILY REPORT
The thir
d, and final, session at the conference in Finland was
shorter and less packed than the previous two, but it was also
much more technical in some instances. The first morning session
was devoted to diagnostic criteria and was divided into two
parts: child and adult diagnosis.
Dr. Walker-Smith from the U.K. discussed historical issues of how
diagnostic criteria were first generated. It started with the
three biopsies: an initial biopsy, a second showing healing and a
third done after a gluten challenge. This was in 1969.
More recent criteria put together in 1989 suggested that in
many children, one biopsy could be enough if there were some
evidence of clinical improvement, demonstrated by antibody
improvement or in some clinical situation like symptoms or
anemia.
There were some exceptions to this:
o in patients where the initial biopsy was not entirely flat.
o where the first biopsy was done under the age of two.
o in communities where there were other diseases that could cause
a flat biopsy (such as parasite infection).
o if there was any doubt about the original diagnosis.
o in teenage patients who were going to go off the diet anyway.
(Apparently the feeling was that teens wouldn't follow the diet,
and if they were going to be non-compliant, they should be
encouraged to do it in a controlled fashion with a biopsy done
before they would go off on their own.)
Another point was made (not by Dr. Walker-Smith) about a finding
in eight non-compliant teens in whom there was a flat biopsy but
the endomysial antibodies were negative! (Sorry, no more
information on that.)
Then there was a discussion about serologic tests, and the
feeling was that the tests are not yet good enough and can't
completely replace the need for a biopsy.
In adult biopsies, another doctor felt that in many cases,
two biopsies are necessary, one before the gluten-free diet and
one after starting the diet. It was also noted that how reliable
this would be would depend on whether there were other diseases
occurring in the community that could mimic the first biopsy.
The next discussion concerned a Finnish study that suggested
it didn't matter where in the duodenum the biopsies were taken as
long as they were taken.
Dr. Ferguson (I think there may be two Dr. Fergusons and
don't know which one) commented that doctors should be aware of
the personal and financial cost of the biopsy and the hope that
there could be some way to replace this procedure.
Then a general discussion pretty much held that a certain
number of biopsies are essential and there is not yet a zero
biopsy option. They could not overemphasize the importance of
doing a biopsy before beginning the gluten-free diet, and that
there are still some patients in whom more than one biopsy is
necessary.
Joe said the rest of the morning presentations were pretty
scientific.
In the afternoon, Dr. Lloyd Mayer from New York talked about how
the cells lining the intestine can or cannot take up different
proteins. Joe described Dr. Mayer as "not a celiac person."
(NOTE: Since Dr. Mayer is here in New York, where I am, I'm going
to see what I can find out about how his research work relates to
Celiac Disease.)
Dr. Cerf-Bensussan from France talked about T cells and said
there were some very unusual T cells present in the intestines of
celiacs. She also commented about a group of French children who
seemed to be doing okay clinically on a gluten-containing diet
although they did have a prior diagnosis of CD, but the children
did have an increased number of these unusual T cells, which are
called gamma delta cells, in their intestines.
Next, Dr. Hayday from Connecticut talked about gamma delta cells
seen in the lining of the intestines of celiacs that seem to be
important for regulating immune responses.
Next, Dr. Cerf-Bensussan presented and talked about some unusual
populations of lymphocytes in patients with refractory sprue.
These cells may represent a premalignant condition. She showed
that five patients with refractory sprue had these identical
types of cells.
Dr. Auricchio from Italy was the last individual presenter. He
outlined the six topics that are the most important for future
research:
1. Understanding the entire clinical spectrum of gluten
sensitivity.
2. Identifying the damaging peptides.
3. What is the mechanism of the damage that occurs (I hope I have
this one right; my notes were a bit obtuse).
4. The other (non HLA) genes that contribute to CD.
5. Developing an animal model.
6. Developing strategies of immune therapy.
Following his talk, there was a broad-ranging discussion on
different possibilities for research.
Then, a panel discussion suggested that there are several stages
in what ends up with CD, the first being the initiation of gluten
sensitivity, about which very little is known. Second, was non-
immune reactions to gluten, meaning that the T cells are
important in the damage, but they are probably not the only
process in the initiation phase.
At this point, a comment was made that Joe says was worth
repeating. Here it is, to the best of our abilities, although
it's obviously not a direct quote:
"Some of the response seen in the challenge studies happen too
fast to be purely due to immune cells or T cells. It was
suggested that there are further stages and what we see in CD is
a stage that is further beyond initiation."
Another comment was made that it's important to replicate studies
that have been done in only one center and in only two or three
patients.
Joe then summarized what he thought were the most exciting
aspects of the conference:
1. The searches for the other non HLA genes.
2. The description of very early or possibly non-immune response
to gluten.
3. The suggestion of non-gastrointestinal involvement (apparently
some posters described early changes in the gut within one to two
hours of a challenge (I'm not sure I have that absolutely
correct).
4. That it seems as if major progress has been made in
understanding the mechanism that causes the damage in the
intestine.
I asked about incidence, our perennial U.S. question, and Joe
said there were several posters showing that in almost every
place that was studied, the prevalence varies from between 1 in
100 to 1 in 500. In this regard, Dr. Fasano's Baltimore blood
donor study was one of those presented.
Here's the situation regarding publication of the material from
Finland:
There will be a book that will include all the presentations of
all the invited speakers, which means they will not be on the
internet. (Some of the studies already have been published
elsewhere, so they are available in print.) Apparently there was
some discussion of this, but Joe emphasized that studies will not
be accepted by the scientific community unless they are subjected
to the usual peer review process.
And that's it ... the Finnish conference has ended. I'm sure
there will be plenty to talk about over the next four years and
plenty of leads to be investigated. I, personally, look forward
to finding out more about many of the items discussed over the
last three days.
It was a pleasure to be able to reach so many people with
this information and, especially, to work with Joe Murray. I
should add that he was positively heroic in his efforts to
transmit this information in such a timely fashion, and I think,
as always with Joe, we all owe him an enormous debt of gratitude.
-- Ann Whelan
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
From the listowners:
The listowners would like to express our appreciation to Dr. Murray
for his efforts to keep the list informed. These reports were
thorough, enlightening, and represented significant effort on his
part in taking notes and transcribing them over the phone to Ann
Whelan. We also want to thank Ann Whelan for her excellent job of
capturing the information Joe relayed to her and turning it into
three well-worded reports. Finally, we also appreciate the efforts
of Sue Goldstein, who took Ann's reports and placed them on-line
for our benefit. This truly was a team effort, from which we all
benefitted.
For the Listowners,
Jim Lyles ........ <[log in to unmask]> ........ Holly, Michigan, USA
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