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I am following up to the post about tapering off gluten. I am not sure how
common this advice is but I can tell you that all of the experts I work with
and my approach is to start a newly diagnosed person with celiac disease on
a strict gluten-free diet from the very beginning. I explain the importance
of the diet in reducing symptoms and improving well being, PLUS the
prevention of further complications such as nutritional deficiencies,
osteoporosis, lymphoma, possible development of other autoimmune disorders,
etc.
As everyone knows there is a huge learning curve for the newly diagnosed and
you do not want to overwhelm the person with all the information at the
first visit which is why we recommend follow up visits with the dietitian
and joining a celiac group for ongoing information and support.
There is a group of dietitians in the US and Canada who are working together
to improve the celiac disease and gluten-free diet knowledge and practice of
our fellow dietitian colleagues. For example- the American Dietetic
Association Medical Nutrition Practice Group has a sub unit called
Dietitians in Gluten Intolerance Disease (DIGID). We have been organizing a
huge education campaign that will be at the ADA national conference in
Philadelphia next weekend. Here are a few highlights:
Free resource kits on Celiac Disease and the Gluten-Free Diet have been
assembled and will be given out to dietitians. This is loaded with
scientific and practical information and educational resources. We have done
these for the last 5 years always revising and adding new information. They
are very well received!
Sept. 29 Pre-conference workshop "Celiac Disease and the Gluten-Free Diet:
Are you Smarter than your Patients?" with Dr Fasano and dietitians Pam
Cureton, Shelley Case, Cynthia Kupper, Suzanne Simpson, Dee Sandquist. see
www.mnpgdpg.org <http://www.mnpgdpg.org/>
Sept 30 Conference Session- "Translating the gluten-free diet updates into
practice" by dietitians Anne Lee and Tricia Thompson
Sept. 30 Product Marketplace - Shelley Case and Nancy Falini will have
booths with their gluten-free resources for sale along with a free "celiac
disease and gf diet" resource kit
Oct. 1 Educational session- "New horizons for whole grains and the
gluten-free diet" with Carol Fenster and Shelley Case
Oct. 2 Educational session- "What's new for the food label" by dietitian
Rhonda Kane from the FDA who will be discussing the proposed gluten-free
food labeling
Sept 30-Oct 2. Exhibit and tradeshow- there are many gf vendors as well as
the National Foundation for Celiac Awareness
In addition, I have been working with the Canadian Celiac Association and a
group of dietitians who will be launching an online site that will have all
the latest information about celiac disease and the gf diet including
references, actual articles, teaching materials and resources, links, etc.
We hope to launch this late fall. I will keep the list posted on the website
once it is ready.
I and other colleagues frequently present lectures and workshops on celiac
disease and gf diet to dietitians throughout North America. I can honestly
say that progress is being made to educate dietitians but there still is
lots of work to do and that is why it is so important that everyone in the
celiac community work together!
Best regards,
Shelley
Shelley Case, B. Sc., RD
Case Nutrition Consulting, www.glutenfreediet.ca
Author: Gluten Free Diet: A Comprehensive Resource Guide
Medical Advisory Board: Celiac Disease Foundation, Gluten Intolerance Group,
Canadian Celiac Association
Advisory Board: Living Without Magazine
EMail: [log in to unmask]
Phone: (306) 536-7716 Fax: (306) 751-1000
Sender: Celiac/Coeliac Wheat/Gluten-Free List
<[log in to unmask]>
Poster: Susan Pieper <[log in to unmask]>
Subject: Tapering off/weaning away from gluten?
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Do dietitians often (or ever) advise tapering off from gluten? I'd never
heard of such a thing until a few days ago, and I'm still having a hard time
imagining it. Yes, I'm from the "avoid gluten like rat poison" school
myself, and I didn't have any input from a dietitian when I was diagnosed
(except from this list's archives).
I turned to Shelley Case's excellent paper, Going Gluten-Free: A Primer for
Clinicians, to see if this was addressed, but the paper doesn't specifically
answer that question. The authors discuss giving the patient some
preliminary information upon diagnosis and then referring him/her for a
series of visits to a dietitian. But, no specific mention is made of how and
when to begin the diet, but the paper intimates that the patient needs to
have knowledge of the intricacies ...
I'm not criticizing this paper, but am afraid that if there are dietitians
advising people to taper off gradually, perhaps that's why they never reach
100% compliance.
In looking at another document focusing on the three-step process for
self-management on a g-f diet, step #1 is "eliminate all gluten exposure."
Perhaps I need to provide this paper to the local dietitian who advocates
weaning a person off gluten??
Comments? Responses? I'll summarize.
Susan Pieper
Las Cruces, NM
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