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:                                                      :
: Excerpts from the Healthy Villi Celiac Support Group :
: ---------------------------------------------------- :
: newsletter: Spring 1999       Melinda Dennis, editor :
: newsletter: Summer 1999           95 Orchard St., #2 :
:                                Somerville, MA  02144 :
:......................................................:

Gluten-Sensitive Enteropathy, by Melinda Dennis
----------------------------
Wouldn't it be a relief to know that the next time a celiac walked
into a nutrition office, she/he would be greeted with a dietitian who
was following a standard of guidelines for the disease?  Well,
guidelines for gluten-sensitive enteropathy (GSE) are now available as
of March ' 99.  According to Janet Gilbreath, Manager of Quality
Management Research for the ADA, dietitians can choose to implement
these guidelines in their practice; the ADA anticipates seeing them
applied widely throughout Massachusetts.

Medical Nutrition Therapy (MNT) protocols are a set of detailed
guidelines specific to a particular disease.  In 1995, the Quality
Management Committee of the American Dietetic Association (ADA), after
reviewing more than 20 versions, created a standardized manual to
guide dietitians through the nutritional care specific to individual
conditions.

The MNT protocols are published in the Medical Nutrition Therapy
Across the Continuum of Care.  In addition to setting a framework for
standardized treatment, the manual also defines quality and
effectiveness of care and outlines the potential health outcomes with
use of the protocol.  Naturally, individual disease cases vary.  While
the MNTs serve as a general framework for treating a disease, the
judgment of the dietitian still holds as the determining factor for
each patient's case.

Recently, Blue Cross and Blue Shield of Massachusetts requested that a
protocol for gluten-sensitive enteropathy be written as a guide for
reimbursement.  Published too late to make the second edition of the
Medical Nutrition Therapy Across the Continuum Care in October 1998,
it appears in full text in the March 1999 Journal of the American
Dietetic Association (pp.  352-62).  The next edition of the manual,
scheduled for publishing in late 2000, will contain the GSE protocol.

The GSE protocol has been designed for an ambulatory care setting for
adults 18+ years old.  It recommends a series of 4 sessions with a
licensed dietitian and a follow-up appointment 3- 6 months after the
final session.  The Outcome Assessment Factors, or stated simply, the
key areas to be covered, include lab readings, anthropometric readings
(height, ideal body weight), quality of life readings, and behavioral
and cognitive changes.  The protocol specifies acceptable lab scores
and sets goals for the patient's understanding of and adherence to the
gluten-free lifestyle.

Session I begins by obtaining clinical data to assess the patient's
level of severity, including lab values, medical history, biopsy
results, absorption test results, clinical signs and symptoms,
medications and measurements of the patient's quality of life, using a
sense of well being or pain scale evaluation.  Next, the patient is
interviewed to gather information on anthropometrics, GI symptoms,
nutrition history, use of medications, psychosocial and economic
issues and willingness/readiness to learn the gluten-free diet.

Next, the patient is trained for the self-management of the disease.
The dietitian reviews the key facts about celiac disease and the
nutrition prescription, including identifying sources of gluten,
reading food labels, modifying recipes, investigating vitamin/mineral
supplementation, planning gluten-free meals, etc.  Self-management
training also includes educational information on nutrition and
resources for gluten-free foods.

Finally, goals and expected outcomes are set for the next scheduled
session.  The necessary lab tests are also outlined in order of their
occurrence.  Progress Notes maintain a record of visits, tests and
clinical and behavioral outcomes.  It's almost like having a coach to
cheer you on!

What a reassurance to know that we can be treated and monitored in a
consistent, organized manner.  With this kind of standardized clinical
information of GSE readily available to the nutrition community, the
likelihood increases that newly diagnosed celiacs will adjust more
rapidly to the gluten-free lifestyle.

E-mail <[log in to unmask]> for an electronic version of this
protocol.