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Hi listmates.
I thought I would share something each of us needs to be aware of no
matter how long you have been GF, no matter whether you are officially
diagnosed or not...no matter what anyone else tells you about the diet.
no matter how well you think you comply.
The below study is the first, I believe, to really look at how people
are following the GF diet. Sadly, over 56% of the Celiacs showed
positive blood work and some intestinal damage indicating dietary
noncompliance had occurred to some degree.. most correlated with
miseducation or lack of education on the diet. My point is that there is
a good possibility that, like this research, 25% of the listmates here
are in severe disease condition and most might not even know it. Perhaps
this is a wakeup call to those who do not make the effort to verify
whether something is GF or not. So, when you give advise on what to eat,
when you are told or hear that something was gluten-free or not, keep in
mind that we have a responsibility to each other and ourselves to as
accurate as possible in being correct. It is not known how partial
compliance to the GFdiet helps or hurts in ways besides intestinal
cancer. We know that to avoid long term intestinal complications
requires 5 years of a fully GF diet. But there are other medical
issues...systemic, bone, neurological, mental, dental and many
associated autoimmune diseases that some of us have and their source is
not fully known. Please be smart ... get smart if you are not. and
follow the diet completely and when in doubt, don't eat it.
I care about every single one of you here and do not want to
see anyone get mislead.
Kathy
==============================================================
Long-Term Follow-Up of Celiac Adults on Gluten-Free Diet: Prevalence and
Correlates of Intestinal Damage
Digestion 2002;66(3):178-85 PMID: 12481164
Ciacci C, Cirillo M, Cavallaro R, Mazzacca G.
Department of Internal Medicine, Gastrointestinal Unit, Federico II
University of Naples, Naples, Italy.
Celiac.com 01/12/2003 - Background and Aims: Celiac disease is the most
common severe food intolerance in the Western world and is due to gluten
ingestion in genetically susceptible children and adults. Intestinal biopsy
is the golden standard for evaluation of mucosal damage associated with
celiac disease. Gluten-free diet is the key treatment for celiac disease.
Data on the long-term control of celiac disease are few and limited to small
series of patients. The study reports data on the control of celiac disease
and on its correlates in a large cohort of celiac adults during long-term
treatment with gluten-free diet.
Methods: The study cohort comprises 91 men and 299 women having undergone
treatment with a gluten-free diet for at least 2 years and with complete
records for visits at the time of diagnosis of celiac disease (baseline).
Data collection included gender, age, education, weight, bowel habit, blood
hemoglobin, plasma albumin and cholesterol, serum antiendomysium antibodies
(EMA), dietary compliance to gluten-free diet (coded as good, low, or very
low), and intestinal damage at biopsy (coded as absent, mild, or severe).
Results: The duration of follow-up was 6.9 +/- 7.5 years (mean +/- SD,
range 2-22 years). At follow-up visit, intestinal damage was absent in
170 patients (43.6%), mild in 127 (32.6%), and severe in 93 (23.8%). At
follow-up, intestinal damage was significantly associated with dietary
compliance, EMA, and plasma albumin (follow-up value and change value
from baseline to follow-up). Baseline education significantly predicted
dietary compliance and intestinal damage at follow-up.
Conclusions: Celiac disease is often poorly controlled in the majority of
patients on long-term treatment with a gluten-free diet as demonstrated by
intestinal biopsy. Lack of adherence to strict gluten-free diet is the main
reason of poorly controlled disease in adults. Laboratory and clinical
information have a high positive predictive value and low negative
predictive value for intestinal damage on long-term treatment. Dietary
compliance as assessed by interview is the best marker of celiac disease
control due to low cost, noninvasivity, and strong correlation with
intestinal damage.
Copyright
2002 S. Karger AG, Basel
(PS:If each of us put some effort into getting the labeling laws changed
to identify gluten content in foods most questions would be answered. If
you are sincerely interested in helping in that cause, contact Mandy
assistant to Cynthia Kupper, RD, CD Executive Director Gluten
Intolerance Group at [log in to unmask] for further info.)
============================================================
Posted with permission
Dear Mrs McBride
Thank you for your mail dated January 14, 2003 in which you request
permission to post the abstract from article
Ciacci C. et al.:Digestion 2002;66(3):178-85
to the Celiac support e-mail list.
Permission is given herewith under the condition that the original
source and S. Karger AG, Basel are mentioned.
Yours sincerely,
Carmen Scaglia
Rights and Permissions
S. Karger AG
Medical and Scientific Publishers
Allschwilerstrasse 10
CH - 4009 Basel
Tel +41 61 306 14 75
Fax +41 61 306 12 34
E-Mail [log in to unmask]
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