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The following is a report from the international Coeliac Symposium
currently being held at Tampere, Finland.  This event occurs once
every 4 years, and is the most important gathering of researchers
in our field.  We are very fortunate to have two volunteers as our
reporters: Dr. Joseph Murray from the Celiac clinic at the University
of Iowa, who is attending the conference and calling in his reports,
and Ann Whelan, who is transcribing, summarizing and editing them.

Many of you know Ann Whelan as the editor of the GLUTEN-FREE LIVING
newsletter.  This is an excellent printed newsletter which covers
important topics at a level of detail which is difficult to do on
a listserv just as ours.  It is also an excellent product to give
to medical professionals to assist them in keeping up with this field.
It is well researched, and includes quotes and/or articles by many
well-respected clinicans and researchers in the Celiac field.   One
year of 6 issues is $29, two years is $49. International orders are
$5 extra. A sample issue is $5.95. Four issues have been published
so far, the fifth is about to appear).  Order from Gluten-Free
Living, P.O. Box 105, Hastings-on-Hudson, NY 10706. Ann plans on
covering a few selected topics from the Tampere symposium
in greater detail (and with additional sources) in future issues.

Bill Elkus
for the Listowners

---------Ann Whelan / Joe Murray report #1 follows-------------

THE DAILY REPORT

Hi, everybody. Although I am not currently on the Internet, I am
pleased to be involved in this effort to get the word out as
quickly as possible. After listening to Joe Murray talk about the
conference, I can tell you that I'd love to be there -- as I'm
sure most of us would prefer. Joe says he didn't take a head
count in the hall, but it's packed and just about everyone who is
anyone in the celiac community -- with very few exceptions -- is
in attendance.

Today's rundown is pretty descriptive. Time permitting tomorrow I
will try to get a bit more depth. But I think in the following
information, you'll find plenty of interesting developments.
     So, here we go...

The first speaker, Dr. Jarmo Visakorpi, from Finland, gave an
overview of CD and how it started out being thought of as a rare
gi disease of children and not a common disease that occurs at
all ages and may not be limited to the gi tract. Joe remembered
one quote that he felt would be well worth repeating -- and
you'll see why.

Dr. Visakorpi said:

"Many people call parts of the celiac iceberg by different names,
but that's not important. It's  more important to know the size
of the iceberg and how it floats...In Sweden, the whole iceberg
is floating. In other European countries,  the tips of the
iceberg are showing. But in the United States, the whole iceberg
is submerged."

Wow! I'd call that a great image...

Dr. Luigi Greco, from Italy, spoke next. He talked about origins
of cultivation and how wheat was the first cultivated plant, at
least in the middle east. The cultivation of wheat allowed people
to change from being nomads to being settled. The next big
occurrence relative to cultivation was that people discovered
they could ferment wheat and make beer!
     Dr. Greco went on to comment that in the western part of
Europe, exposure to gluten has only occurred  very recently in
genetic terms, with little time having elapsed for the population
to adapt genetically!
     Dr. Greco also commented on the perceived differences in
incidence rates that we see quoted and suggested that these
differences may be actually due to the different ages of onset in
different populations and there really is little difference
statistically between different measures --1 250 and 1 in 500,
for example.

Dr. Henry Asher from Sweden spoke next. He discussed the Swedish
experience, which has shown an increased incidence among children
that is different from other countries.
     Dr. Asher made several observations about the gluten content
of commercial foods, which has gone up dramatically since cow's
milk protein has been eliminated from formulas and replaced with
gluten-containing material. He says the amount of gluten given to
young children is correlated with the onset of symptomatic
disease. He looked at gluten consumption in children: It's
highest in Italy, next highest in Sweden, next is Finland and the
next is Denmark and these levels of gluten consumption parallel
the rise in symptomatic cd in children.
     Dr. Asher went on to observe that the diagnosis of cd is
related to a shorter duration of breastfeeding, the earlier
introduction of solid foods and a higher amount of gluten in the
diet. He showed news clippings from Sweden, including one that
said the Justice Minister in Sweden has a daughter who has cd and
the minister has called for an outright ban on gluten-containing
baby food!
     Not surprisingly, Joe says there was a lot of comment on
this question. Some suggested the need to look for other factors
for the change in childhood incidence. Also, if the amount of
gluten given to children is reduced, they may develop not
symptomatic CD but silent or delayed CD. Joe says it's too soon
to decide what can be done with childhood dietary content, but
that it seems reasonable to prolong breastfeeding and to reduce
the amount of gluten in the child's diet.

Dr. Carlo Catassi, from Italy, spoke about screening. He used a
quote (not his own) that said screening should only be undertaken
if there's a risk of complications and we can alter the natural
history of the disease in a significant proportion of those
screened. Dr.  Catassi claims in Italy, CD is one of the
commonest lifelong disorders. He suggested that for every one
diagnosed CD individual in Italy, there may be 7 others who have
asymptomatic disease. In Italy, they screened 17,501 students and
came up with a high incidence.

Dr. Martin Stern spoke about the standardization of screening
tests. Joe said his talk was very technical about standardization
(not screening) in Europe. One important point that he made of
interest to laypeople is that these tests can either be set as
screening tests or as diagnostic tests but not both at the same
time. What makes a good screening test does not make a good
diagnostic test. Dr. Stern said the normal cutoff point needs to
be adjusted for whichever aim you have.

Dr. Pekka Collin, from Finland, spoke about diagnostic strategy
and how to find CD. He did it on the basis of several things:
actively screening high risk groups, including first-degree
relatives, and those with insulin dependent diabetes mellitus,
rheumatologic problems, especially sjogrens syndrome, problems of
infertility, thyroid disease, and neurologic disease.

The second thing he does is have a service where he gives open
access endoscopy to primary care doctors who refer patients for
endoscopy. Third, is to biopsy the duodenum of all patients who
are endoscoped. Dr. Collin went on to remark that the incidence
of DH, which is an obvious condition, has been stable and
unchanging over the years but the diagnosis of CD is increasing
dramatically.

Next were several short oral presentations not listed in the
program. First, Dr. Ivarsson and colleagues from Sweden talked
about different factors leading to cd in children. They mentioned
the quantity of gluten, a shorter duration of breastfeeding and,
interestingly Joe says, the socioeconomic status of those
diagnosed. The lower the socioeconomic status, the greater the
risk. Additionally, he found that those born in the summertime!
have a greater risk and, of course, those genetically
predisposed.
     Second, Dr. Hovdenak and his colleagues from Norway talked
about blood donor screening. Joe said he thinks it's very
interesting that he found a high incidence, 1 in 200, but did not
find any difference in sex. Joe says that's different from
symptomatic CD, which is predominately female.
     Third, Dr. Kaukinen from Finland looked at CD in patients
who had positive antibody tests and normal architecture in the
intestine. They show that many of these patients have some subtle
changes in the intestine, but he's not sure yet what it means.
(NOTE: The previous seems contradictory to me. I'll try to
clarify tomorrow.
     Fourth, Dr. Bahedi from France talked about his findings that
showed that only 43 percent of adult patients adhere to the GF
diet. This was detected by biopsy and endomysial antibodies. He
emphasized that when the antibodies are positive, patients are
told they are not compliant, but if the antibodies are negative,
it's  not necessarily saying everything is okay. (NOTE: I'll see
what else I can find out here tomorrow.)

The next scheduled speaker, Dr. Anne Ferguson from the U.K., said
that some people just eat a naturally low-gluten diet and that
aspect needs to be considered when assessing for CD. She also
talked about the latent forms of CD.

Dr. Auricchio from Italy talked about patients who have symptoms
due to gluten, but with normal biopsies. These people seem to
have many differences from celiac patients. Dr. Auricchio
suggested there may be different genes that determine sensitivity
to gluten on one hand and the development of small bowel problems
on the other.

Dr. Lionel Fry from the U.K. talked about DH. He stated that all
patients with DH have some degree of enteropathy, even though
less than 1 in 10 patients with DH have GI symptoms. Dr. Fry also
said 40 percent of DH relatives have gluten-sensitive
enteropathy. He went on to say that the GF diet can take 6 months
to two years to get healing of DH, and a relapse of the DH rash
may take 2 to 12 weeks to occur after someone eats gluten.
     Total disappearance of IGA skin deposits may take up to 7
years  after a GF diet is started.
Dr. Reunala from Finland talked about associated diseases. He
quoted others who said 5 to 14 percent of DH patients have
thyroid disease and went on to say that DH patients have an
increased incidence of lymphoma but a gf diet seems to protect
against lymphoma.

Dr. Holmes from the U.K. talked about malignancy in CD. He quoted
that the is risk is between 0 and 7 percent, while in general
it's 3 to 11 percent and this is reduced by being on a GF diet.

Dr. Carazza from Italy talked about other conditions like
refractory disease, hyposplenism, and something else, but there
are no notes.

Then there was a forum. Dr. Hallert talked about psychiatric
illness in adult CD patients. He studied 180 CD patients and
found that 22 percent had been to the psychiatric department
prior to diagnosis of cd and the average time from going to the
psychiatric department to the eventual diagnosis of CD was 14
years! (NOTE: I think I've got that right but think I should
verify the figure tomorrow.) Dr. Hallert also said celiacs were
four times as likely to be seen in the psychiatric department as
the general population! He also went on to say that depression
may occur after the CD diagnosis.

Dr. Ventura from Italy talked about autoimmune disorders. He
suggested it's more common in patients diagnosed later in life
than those diagnosed in early childhood.

Next, Dr. Murray himself presented information about seven
patients who have duodenal strictures as a previously undescribed
presentation/complication of CD. I'll see if I can get more
information tomorrow, or perhaps it can wait until he returns.

Dr. Bai, (sorry, don't know from where) described effects of the
GF diet on bone density. Patients showed marked improvement in
bone density with the GF diet, although it did not return to
normal. The improvement was better in the spine than in the hip
and better in the hip than elsewhere. Dr. Bai went on to say that
premenopausal women did better than postmenopausal women.

And that's it for today. I'll try to ask Dr. Murray more
questions tomorrow, when he says the presentation might be much
more technical. We were on the phone for a very long time just
relaying the previous notes, which certainly provide a great deal
of gluten-free food for thought!

Talk to you tomorrow!