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Hi Listmates:

This past weekend we had our Annual Celiac Conference and it was
tremendous. Dr. Alessio Fasano from the University of Maryland spoke and
I couldn't believe what the research is showing.

The reason many people in the U.S. are not diag. with celiac is because
the doctors and pathologists are not familiar with the fact that celiac
disease has 4 stages of damage. Stage 4 is when your villa are gone and
that basically is the only time people are diag. But you can be very
very ill in the early stages plus by the time you are at Stage 2 most
everyone is lactose intolerant. Thought you might find that interesting.
Plus they are discovering that people that are asymtomatic (no symptoms
of celiac) also exist.

I was also able to obtain a copy of a brand new magazine called "Sully's
Living Without." A Lifestyle Guide for People Living with
Food and Chemical Sensitivities. The Spring and Summer '98 issues
have articles on celiac disease, recipes, an interview with Dr. Joseph
Murray. There are also interviews with families that have gone through
what many of us have experienced. Dr. Murray is a medical advisor of
this publication.

The cost of the magazine is $12.00 per year (4 issues).

The subscription phone #630-415-3378.

The subscription fax #630-493-9511.

The editor (Alicia B. Pitzer) can be reached at the following e-mail
address:       [log in to unmask]

A dietitian from Children's Hospital in Columbus talked to Ms. Pitzer
and Ms. Pitzer stated that one of the next issues will have articles on
celiac/diabetes!!!!!!!

I will tell you that this is the best publication I have ever seen that
addresses the less well-known as well as well-known problems people have
with food allergies, etc. There was an article that one woman has so
many food allergies she has to carry an Epi-pen with her all the time.
The publication also addresses how to deal with social situations, etc.

All I can say - it is about time. I have been living this food nightmare
since 1984! Diag. first with severe food allergies, but in reality it
was celiac.

The cost of the publication is minimal considering the amount of info.
in it.

The one issue I would like to address on the list is that now out of the
woodwork "Canola Oil" is said to be a problem for celiacs. I heard a
slight mention of it at the conference, but no details. Then in the
Spring issue of the Sully's Mag. there was a page that stated what
celiacs should stay away from and again "Canola Oil" surfaced. No one
is stating the reason, so I don't know if alcohol, or gluten is used in
the processing. This one is a new one to me - can anyone enlighten me?
I have always stayed up to date or thought so. The Tri-County Celiac
Support Group's Shopping List (Michigan Support Group) listed several
brands that were supposed to be o.k. It may be one of those things if
the manufacturer tells you that it is not exposed to gluten in the
processing.

The other thing I was surprised about at the conference was that Sylvan
Farms sent in products and their mixes contain amaranth and quinoa.
Which I know these are controversial, but I was surprised that they were
allowed at our conference. There has always been strict gluten-free
vendors there. The Sully's Mag. also said to avoid amaranth and quinoa.
Personally, I am real gunshy of these  products. Also, at the conference
the "oats" thing is still up in the air.

You have read enough!

Pam