<<Disclaimer:  Verify this information before applying it to your situation.>>

Last Saturday, Dr. Alessio Fasano M.D. spoke to the Celiac Disease Foundation
at their Quarterly meeting. Dr. Fasano is a renowned specialist in Celiac
Disease. He spend many years at the University of Naples where the reported
prevalence of our disease is much greater than here. He is now at the
University of Maryland, where e he is a dedicated clinician and researcher.
 His prime concern is with children but works a great deal with adults to
gain statistics.  The following are my poor notes taken at the meeting. I
hope some of the other folks who attended and maybe took a tape record, will
add or correct my thoughts.
Dr. Fasano, indicated that once a Celiac always a Celiac. We will not outgrow
this condition. A lot of folks might seem to be able to cheat, but they are
doing hidden damage to their gut, or were miss diagnosed in the first place.
We (celiacs) are born with the genetic background that at some point will
most likely manifest itself in symptoms after some environmental event.  He
went into some discussion about the genes, and blood work. I was not capable
of following in any detail that information. However I did pick up the fact
that if we classify in the DQW2 area, there is a 98% chance we will have
Celiac Symptoms. He spoke at some length about the poor diagnoses in this
country. In most of the world where there is good screening, the numbers seem
to show that their is one celiac in every 300 people in the population. Dr.
Fasano, believes that the same numbers are probably true in the U.S. He cited
a city in Denmark, that had a reported prevalence of 1 in 12000. This city
was only a short distance from a city in Sweden, that was reporting 1 in 400.
After close screening of the population in the Danish city, the true numbers
turned out to be the 1/300. By the way in that Danish city, the normal diet
did not include cereal until after age one. Dr. Fasano cited places in China
and Africa, again where good studies were done, and the numbers seem to run
in the same area  1/300. Of course the only real way to test is with Blood
and then with the old favorite, the Biopsy. Even this will  not be perfect,
as some of us can  be tested without symptoms, or have not had symptoms yet,
or are on a GF diet and will not show anything in the tests. There are some
of us that are latent, and asymptomatic, and most important, Dr. Fasano
indicated is that many of us are Atypical in our symptoms. A few that he
mentioned were forgotten by me or never learned. Short stature, delayed
puberty, anemia, joint complaints, mouth ulcers, kidney problems, dental
enamel defects. etc. He is convinced that whenever a patient presents with
any of those symptoms, along with our standard ones, and there is no other
logical reason, the patient should be tested for Celiac. He also feels that
all family members up and down 2 layers should be tested. He indicated that
the great American Medical community is probably 30 years ahead of the world
in all areas except Celiac Disease. He feels we are 30 years behind, just
because of poor diagnosis. Just think what a lobby we would be if we could
document 1/300. Labeling laws would certainly change, and manufactures would
be at our doorsteps to prove that food they make would be GF.  He spoke a
little about DH in saying that about 5% of Celiacs will be found to have DH
while 100% of DH patients are Celiac. He talked about Anemia, and went into a
little detail about iron deficiency vs foliate or B12 problems., Vitamin K
problems. and poor clotting, all as potential signs of Celiac Disease. Some
additions stats that he feels will be realistic when real numbers are
available. 20% of CNS problems are related to Celiac Disease, 25% of Dementia
problems are Celiac related. Some other symptoms that might be tested for
Celiac are Epilepsy, Behavior change of mood, irritability, autism, Cystic
Fibrosis, ADD, and some cases of Brain calcification that shows up in a CT
scan, can disappear after a GF diet for a period. Some direct associated
diseases. Diabetes type I, thyroid disease, sjogrens, rheumatoid arthritis,
liver disease where there is no other explanation, collagen vascular disease,
and other autoimmune disorders.  Dr. Fasano believes that today, we do not
need a gluten challenge each year. If we are diagnosed with blood  we should
go on to the Biopsy, after that only blood unless there are problems. If our
blood is good a year after positive biopsy, we are following our diet well
and should be feeling pretty good. No need for the challenge. But we should
all have a biopsy first to prove if we are truly Celiacs or not. If not there
are other problems we should be looking at. I asked about the rectal
challenge, and although it sounds great and Dr. Fasano felt it had tremendous
potential, early reports are that the error rate  is about 50% and of course
that is just not close enough to take the place of the biopsy. He hopes that
improvements  can and will be made and someday in near future, there might be
important findings. He then spoke of Mortality of Celiac Disease. Of those
diagnosed and treated (followed a good GF diet) the mortality is the same as
the general population. The folks that are untreated or those that cheat
knowingly have double the mortality of the general population and lots more
sickness including malignancies. Some other problems facing those that are
not diagnosed and do not follow the diet are increased general sickness
(chronic ill health), infertility, permanent stunted growth, intestinal
lymphoma, increased health cost.  He closed by asking how long it took us to
be diagnosed in the first place with CD? , He asked for those diagnosed in
three weeks after first symptoms, then 3 months, then three years, and by
this time a few in the audience had raised their hands. Most of us said
around 10 years. He said that in Europe, the average time from reporting
symptoms to diagnosis and being placed on a GF diet is 3 weeks. After that
Dr. Fasano, took questions for about an hour. It was a little hard to
understand the thick Italian accent at the beginning, however in my opinion,
Dr. Fasano was the best speaker I have heard since I first heard the word
Celiac or Gluten. I only wish I had taped him or that someone had Videoed his
presentation. I apologize in advance for spelling and grammar errors, If I
took the time to edit, you would never get to read this. He certainly
answered some of my questions, I hope this will answer some of yours.  Bory