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:                                              :
:        Excerpts from _CDF Newsletter_        :
:        ------------------------------        :
: Summer 1999        Elaine Monarch, publisher :
:                    Celiac Disease Foundation :
:                 13251 Ventura Blvd., Suite 1 :
:                  Studio City, CA  91604-1838 :
:..............................................:

Digestive Disease Week 1999, by Elaine Monarch and Elizabeth Purko
---------------------------  [condensed somewhat--Jim Lyles]

What a great meeting for celiac disease!  Digestive Disease Week is
the largest international meeting of gastroenterologists and related
specialists, meeting every May, in the United States.  More
information was shared on Celiac Disease (CD) this year than ever
before.  We were very fortunate to have one of our esteemed medical
advisors, Peter Green, M.D., on the review committee.

Over forty abstracts were published on a broad range of celiac-related
topics.  There were two invited lectures on CD, by Drs.  Martin
Kagnoff and Peter Green.  Additional research forums on CD were
chaired by Drs.  Joseph Murray, Carol Semrad, Alessio Fasano, and
Green.

One thing we found very disturbing was the attitude and opinions
expressed by some of the doctors.  They seem to feel that delivering
the diagnosis of CD to their patient was a terrible thing.  These
doctors also boldly stated that "all of their patients cheat" because
the diet is "so restrictive" no one can maintain it.  They set their
patients up for failure before they even leave the office.  Quoting
Joseph Murray, M.D., in the _American Journal of Clinical Nutrition_,
vol. 69, March 1999:  "A positive, optimistic attitude on the part of
the physician is crucial to the future success of the patient.
Cheating on the diet should be actively discouraged.  An active
interest on the part of the clinician can improve compliance as can
patient knowledge that follow-up blood tests can detect gross gluten
ingestion."  Each celiac can do their part when they let their doctors
know that we're happy to feel so good by just changing our diet.

What follows is a sampling of the abstracts presented at the meeting:

* "Long Term Follow-up of Patients Diagnosed with Celiac Disease in
  Early Childhood", Peter Wieneke, Claire O'Leary, et al, NUI, Cork,
  Ireland.  Conclusions:  (1) Most patients diagnosed with CD in
  childhood do not attend any medical or dietary service for long term
  supervision in adulthood.  (2) Most of these patients are not
  adhering to a gluten-free diet (GFD).  (3) Symptoms, not the fear of
  long-term complications, are the primary motivating factor guiding
  dietary compliance in adulthood.  (4) Outcome including risk of
  malignancy, osteoporosis; and more subtle sequelae of long-term
  malabsorption in patients with long-standing CD who are not adhering
  to a GFD.

* "Gastrointestinal Symptoms in Celiac Disease", Joseph A.  Murray,
  The Mayo Clinic, Rochester, MN; and Tureka Watson, Jiro Rufo,
  University of Iowa, Iowa City, IA.  Conclusion:  A wide spectrum of
  gastrointestinal symptoms is associated with CD in adults and most
  respond to a GFD.  There is much overlap with symptoms of Irritable
  Bowel Syndrome (IBS).  Only one half of the patients studied had
  diarrhea prior to diagnosis and even less had symptoms suggestive of
  steatorrhea.  Constipation is a frequent symptom in untreated CD.
  Clinicians will have to maintain a high level of suspicion to detect
  CD.

* "The Changing Nature of Adult Celiac Disease in the United States",
  P H R Green, W Lo, et al, Columbia University College of Physicians
  and Surgeons, New York, NY.  Conclusion:  In the 1990's patients
  with CD are being diagnosed at an older age and have a shorter
  duration of symptoms.  Only 50% of patients present with diarrhea.
  Screening of relatives and incidental discovery at endoscopy have
  become important modes of diagnosis.  Increased awareness of the
  changing nature of CD in the U.S.  should facilitate more widespread
  recognition.

                            -=-=-   -=-=-

College Bound Teens:  Stressed out and overwhelmed enough?  Don't make
it worse by dreading the "food thing".  Other celiacs have gone to
college and survived.  By now you know what you can and cannot eat so
state your needs.  Don't be apathetic, be an advocate for yourself.
Remember CD is unique in that a specific food component is the culprit
that makes us sick.  We don't have to rely on pharmaceuticals, just a
simple change in what we eat.

Make an appointment with the college dietitian-they all have
experience with specialized diets and will be happy to accommodate you
as an incoming student.

Speaking with Julie Lampie, RD, with Tufts University, she said, "Be
nice, but be firm and don't compromise your health.  The food service
departments at all leading colleges and universities are more than
willing to set aside space in the cafeteria refrigerator for your
gluten-free food."

For more information you can call her at Tufts University at
617-627-2833.  Or you can talk with a fellow celiac, graduate student
Laura Golstein.  You can reach her at 11 Kent Court #2, Somerville, MA
02143, 617-628-0416, [log in to unmask]