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President's Corner:
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(Editor's note: This section is normally deleted from the electronic
version of the newsletter, as it usally pertains to local group
activities. However, this month I felt it was at least partly of
interest to those outside our local group. Rather than trying to
shorten or rewrite it, I decided to include it in its entirety. This
section will generally be left out of future editions.)
To determine where you are going, it is often helpful to look where
you've been. So let's take a look at all that has happened since
last summer:
* Our membership increased from about 150 last August to over 200
now.
* We had six meetings, a Christmas potluck, our traditional March
birthday potluck, and this month's group picnic. Speakers
included a psychiatrist and representatives from Big Boy and the
Michigan Restaurant Association.
* We revised and distributed our new member packet to everyone
last fall.
* We compiled a brand new shopping guide which each member
received.
* We sent out a newsletter every month except October.
* We produced a new cookbook.
We are a local chapter of CSA/USA, a national organization with
chapters all across the country. We've done a lot of work with them
over the past year as well:
* We successfully hosted the annual CSA/USA convention last fall.
As Kathy Davis put it, "I am very proud of TCCSSG for
making....the CSA/USA Conference a good memory....We received
lovely letters from Leon Rottmann and Marge Campbell (CSA/USA
officers) on a job well done as well as many compliments from
the CSA/USA Board."<1>
* We were one of the big contributors to their shopping guide.
* Our contributions have appeared in their quarterly newsletter,
The Lifeline, especially in the recipe section.
* One of our members, Judy Hafner, is the recording secretary for
CSA/USA.
* Our by-laws have been cited as an example for other chapters
to follow.
* We've been asked to work with CSA/USA on their new member
information. All in all, I think we have made a good effort to
be all that a support group should be, both for our own members
and for the national organization to which we belong. But our
efforts did not stop there.
We have been able to gather information from a variety of sources to
share with you in the Sprue-nik Press. (We intentionally refrain
from reprinting information for CSA/USA's newsletter because those of
you that are CSA/USA members already receive it; we encourage you to
consider membership in CSA/USA.) We reported on the CSA/USA
conference held last fall. As an added benefit for the group, we
sent representatives to the American Celiac Society's conference last
summer and reported back to you. We've culled information out of
other celiac groups' newsletters. A couple of us have become quite
active on an electronic mailing list on the Internet which is
dedicated to celiacs, and we've gotten some good information from
this source, too. (Incidentally, with our February issue we began
placing an edited copy of our newsletter on this electronic forum,
which currently has over 500 subscribers.)
We believe in learning as much as we can about celiac disease and
sharing it with celiacs everywhere. The more sources of information
we tap, the more we can learn and share. We try to be careful about
what we share, and everything is reviewed and approved by our
advisors, Dr. Thomas Alexander, and Dorothy Vaughan, R.D. We add
disclaimers and statements of caution whenever we feel something
might be controversial or from a limited study. The basics of this
disease and the diet are fairly well understood and universally
agreed upon, but there are many finer points for which there are
opposing views: Are buckwheat and millet okay? Can celiac disease
affect absorption of medications, even after starting a GF diet? Are
all DH patients also celiacs? Experts sometimes disagree on these
and other points, and you have the right to hear multiple viewpoints
(including our advisors') and then make your own decisions.
Also, each source we use has provided information that we didn't find
elsewhere. On at least three occasions in the last year, this has
resulted in a direct benefit to members of our local support group:
1. Elsewhere in this newsletter you will read about a celiac
preschooler who was continually sick and not being helped by the
antibiotics he was taking. An article in the October 1994
Celiac ActionLine listed various medications and how well they
may be absorbed by celiacs. When this information was given to
the child's doctor, the prescription was changed to one of the
medications recommended by the article. Almost immediately the
child began to get better.
2. One of our members has been suffering from weakness in the
limbs, unsteady gait, and other neurological problems. Tests
came back negative. So a question was put out on the electronic
forum: Has any other celiac had this sort of problem, and did
they have any luck in treating it? Within two weeks several
answers came in. Responses included the names of specialists
who were familiar with the problem, a vitamin routine which some
had found helpful, and several articles and references about a
possible link between celiac disease and neurological problems
(Note: This is a relatively rare complication.) This member
was able to take these references to her neurologist and get a
referral to one of the recommended specialists.
3. A member of our group who intended to have an extended visit
with his daughter in Baltimore was looking for a GI specialist
in that area with celiac experience. Because of our attendance
at the American Celiac Society conference last year, we knew of
someone he could see and we were able to pass the information
along to him.
There are many other cases where what we've gleaned from other
sources has been to our direct benefit. It's a give and take
situation; we share our knowledge willingly with any other celiac
group which is willing to share with us. Our newsletter would be
thinner, and our group the poorer, were it not for these exchanges.
--Jim Lyles
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