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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.
 
 
THE DAILY REPORT
 
 
The big story today from Finland is oats. There were two talks
and several posters presented about the topic.
 
In the first talk, Dr. Risto Julkunen spoke about the Finnish
five-year follow-up study in which oats were given to a
population of well-controlled celiacs. They ingested an average
of 34 grams, which is slightly over one ounce, daily for up to
five years. The oats used in the study were specially grown and
tested to be free of wheat, barley and rye. The researchers claim
there was no difference in those allowed the oats and those who
were not.
     There was a second study presented from Dublin, and reported
by Dr. Conleth Feighery. This 12-week study looked at a small
group of patients with healed CD to start with, who were given 50
grams of oats a day. Again, the oats were carefully screened and
tested to make sure there was no contamination.
     After 12 weeks, no effect was seen on biopsy or through
antibody tests. The researchers also took 2 of the 12
participants and did what they called a "micro challenge" of 500
milligrams of gluten a day. Both patients got reactions, so the
researchers felt that at least two of the participants were
sensitive celiacs -- and they still did not respond to the oats.
     A poster from Italy showed biopsies taken from celiacs that
had been studied in the culture plate in the presence of oats,
which did show some effect on the biopsies. In other words,
tissue from biopsies from patients with treated CD were put in a
plate and grown in the presence of oat protein, and the oat
protein had an effect on the biopsies.
     This sounded odd, so I made sure I'd really understood what
Joe reported and paraphrased: In other words, they're seeing no
reaction from oats within the body in some studies but this one
showed a reaction outside the body?
     "Yes," Joe said, "this of course is puzzling."
     Continuing on the oats issue, a series of short studies from
several places also showed what the Finns had shown in the body,
i.e., no problem in the short term.
 
This is Joe's summary on Oats:
 
Over the short term, in well-controlled, healed celiacs who are
compliant in every other way, it may be safe for them to take
oats that have been tested to be free of contamination of other
grains.
     He also mentioned that there were a few studies showing that
contamination of commercial oats may be common in several
European countries.
 
(NOTE: I went to Digestive Disease Week in May, where I met
several Irish doctors who have studied oats. I would describe
their strong beliefs about oats as very "adamant." They are
adamant in believing that uncontaminated oats are safe for people
with Celiac Disease.
     If all of this oats talk pans out as being acceptably
correct to gluten-sensitive individuals in this country, that
would seem to be pretty good news. Then, the next big challenge
would be to figure out how gluten-sensitive people are going to
get access to contamination-free oats. I, for one, will be all
ears.)
 
Moving on to other things:
 
Dr. Paul Ciclitira spoke about in vivo gluten challenge and
showed that one gram of gluten produces damage after only two
hours. 100 milligrams, that's 1/10th gram, produced some damage
or slow damage and 10 milligrams produced no damage.
     The limitations of studies such as this are that they are
highly invasive and there may be some risk. Joe said, "You must
leave a biopsy capsule down for 24 hours, so it's not a small
deal."
 
Dr. Luigi Maiuri from Italy described an in vitro testing of
intestine biopsies that showed a response could be produced. Joe
said this wasn't new but what was interesting was that the
little pieces of tissue could produce endomysial antibodies when
exposed to gluten.
 
Dr. Riccardo Trancone from Italy talked about rectal mucosal
response to gluten challenge. He said he could get a measurable
response in treated celiac disease patients to gluten, which Joe
said was new. Dr. Trancone also talked about the idea that there
may be two separate genetic factors involved in CD. One causes
the individual to be sensitized to gluten and the second one is
involved at the stage of severe gut damage. His work was based on
examination of CD family members who don't have CD.
 
Dr. Michael Marsh described the effects of specific peptide
sequences from gluten. He had done studies in only two patients.
Dr. Marsh said it was very expensive to do tests of this kind
because it's very expensive to make the peptide artificially. He
estimated a figure of about $5,000 (dollars) to do one test in
one patient.
 
Don Kasarda's talk was very hypothetical, Joe said. Don suggested
that Celiac Disease may be the result of a collision of two
separately evolving processes, the first being the storage
proteins in the grasses and the second being control proteins in
animals. Both of these have similarities in their proline and
glutamine content and could lead to molecular mimicry. An
explanation of what he meant is apparently quite complex, and
after trying to explain, we gave up. It all has something to do
with getting your lines crossed -- and this is hypothetical.
     Don also talked about the possible peptide fragments
responsible for Celiac Disease.
 
In his second presentation, Dr. Paul Ciclitira talked about the
potential for identifying small amounts of gluten in foods. Based
on what he said in his earlier talk about in vivo challenge, he
took 10 milligrams per 100 grams of protein content in food as
being the cutoff or threshold. He said that most commercial oats
products are contaminated with gluten. Cooking does not alter the
toxicity. Dr. Ciclitira also commented about toaster
contamination and said he sees about one patient a year who gets
contamination from using the same toaster as the rest of the
family.
     Dr. Ciclitira also commented on the Skerrit test, which
tests for gluten in food (it's the Australian test). He has
"strong reservation" about the test and thinks it's because the
test identifies omega gliadins, which are a minor component of
gluten so the test can give variable results. Apparently this
test is available in Canada.
     Dr. Ciclitira also mentioned other types of tests that
really may not be specific and may pick up other non-toxic grains
but may not pick up rye or barley.
     This brought on a lot of discussion, Joe said. The proposed
CODEX Alimentarius threshold for something to be called gluten
free is 200 parts per million. That's equivalent to 20 milligrams
of gluten in 100 grams of protein. (I'm afraid I can't provide
any more information about this.)
     There was a lot of heated discussion, and a women who may be
the President of the European Celiac Societies objected to the
allowance of wheat starch. Dr. Ciclitira and others said wheat
starch is allowed only because the patients demanded it! Someone
else also estimated that the market for GF foods in Europe was
500 million dollars! Joe said that really surprised him.
     Someone else, perhaps Dr. Ciclitira, said the Vatican now
allows wheat starch communion hosts. Sorry, no more information
available at this time.
 
Dr. Thomas MacDonald from the U.K., gave a very technical talk on
a model system for gut damage. Dr. Erkki Savilahti from Finland
spoke about the role of lymphocytes in latent forms of CD. Dr.
Markku Maki talked about the possible role of the antibodies in
causing changes in the intestine. Dr. Per Brandtzaeg from Norway,
whose talk was on "Development of intestinal immunity and its
relation to coeliac Disease,"  made some interesting comments
about the mismatch of our genetic makeup and the environmental
pressure in the modern world. Again, sorry, no more information
at this time.
     Dr. Brandtzaeg did mention several reasons why breast milk
is particularly good for infants and the development of the
immune system in that it provides antibodies the baby cannot make
that helps protect the intestinal and respiratory tracts. He also
talked about other things that are important to the gut like
bacteria, age, and possible allergies.
 
Dr. Kagnoff's presentation on "MHC and Coeliac Disease was very
technical. He reviewed part of the genetic background on tissue
types and CD. Dr. Kagnoff said virtually all celiacs have a
specific tissue type but many people with the type do not have
CD.
 
Dr. Ludvig Sollid from Norway gave a very technical talk about
lymphocytes and, finally, Dr. Joseph Michalski from the United
States described how he has identified a new gene site, a small
area on chromosome 6 that may be where the other gene for CD is
located. Joe said it was interesting and mentioned a "race to
find that gene."  Dr. Michalski does his work at the University
of South Alabama and uses patient material from County Galway,
Ireland.
 
(NOTE: I've spoken to Dr. Michalski a few times recently about
genetics and HLA typing for a small article that will be in the
September/October issue of Gluten-Free Living. He is very
interesting and said he might consider writing an article for the
newsletter about genes and the search for same. I'll keep you
posted, because I'm really anxious to see an article that even
the brain challenged among us on things scientific can understand
about the genetic mysteries of Celiac Disease.)
 
That's it for today. The last report will be tomorrow. I suspect
we will all be talking about the Finland conference for quite a
long time. I'm sure I'm just like you in being real anxious to
know more about some of this tantalizing information.