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From:
Reimar Gaertner <[log in to unmask]>
Date:
Fri, 26 Jun 1998 15:37:18 -0400
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<<Disclaimer: Verify this information before applying it to your situation.>>

Since there were quite a few people interested in responses to my query, I
offer this summary.

A number of you mentioned that two days was not a sufficient challenge with
gluten to see villous atrophy.  I agree, although I was happy at the time
not to have to go through a longer torture period.  My GE repeatedly
assured me that the gut reaction happens very quickly.  Maybe not.  I am
beginning to suspect that this "gold standard" is not all that golden.

Others with negative diagnoses also felt as I do that the pain of going
through more testing was not worthwhile.  Better to stay healthy on the
diet.  For some the challenge/testing may be worthwhile, such as to
determine potential problems in offspring, or for proof of a need for
accommodation.

Recall that my questions were: "Are these two conditions, celiac sprue and
gluten intolerance, two points on a continuum or two entirely different
diseases?  Is the prognosis for gluten intolerance different?  Are any
researchers studying this difference?"

Most responses addressed the first question.  Several people provided
examples indicating that the severity of the disease varies greatly, from
smooth villi with no symptoms, to normal mucosa with symptoms.  So a
continuum exists.  It would be great if genetic testing could identify the
disease, but here again, both false positive and negatives occur.  Actually
it may be that the tests aren't so much false, but that the disease varies
so much for each individual and we're not looking for the right things.
One list member tested positive for the "celiac gene" and positive on the
IgG antibody test, but negative on the biopsy.  It appears that no tests
today are entirely reliable.

Alternatively, others indicated that gluten intolerance symptoms may result
from other conditions.  Some list members have been diagnosed with other
conditions such as irritable bowel syndrome, eosinophilic gastroenteritis,
and microscopic colitis.

I was directed to the Websites of the Celiac Sprue Association (
http://www.csaceliacs.org/infocenter.html) and the Celiac Group Support
Page (http://www.celiac.com/).  This led (through a buried link) to my
rummaging around the Environmed Research website (
nutramed.com/digestion/celiacallergy.htm).  They state that:

     "We think that people diagnosed with celiac disease are a
     sub-population of a much larger group with gluten allergy... Often, an
     assortment of related whole-body problems accompanies celiac disease.
     We think the related problems are typical of delayed pattern food
     allergy and use celiac disease research information to create a model
     of food allergy."

This site provides information on immediate (IgE), delayed and auto-immune
reactions.   RAST is used to detect immediate IgE allergies to gluten (this
is the same allergy reaction as hay fever and can result in anaphylactic
shock in some persons allergic to nuts, for example)  One listmember also
fell into the gray area between a negative celiac diagnosis (and negative
RAST) and obvious reactions to gluten.

Therefore, it appears that for some, gluten intolerance can be due to
diseases other than celiac sprue.  On the other hand there appears to be a
continuum in manifestations of celiac sprue.  But many will not meet the
textbook definition.  Harrison's (13th ed) rigorous definition is as
follows:

1) evidence of malabsorption

2) abnormal small-bowel biopsy showing blunting and flattening of villi and
changes in the surface epithelium

3) clinical, biochemical, and histologic improvement after instituting a
gluten-free diet.

This definition indicates that celiac disease is primarily a malabsorption
phenomenon (due to an auto-immune reaction) as opposed to a food allergy or
intolerance.  But for the present, as far as treatment goes, I may just as
well have celiac sprue.

Regarding the second question, I plan on trying bread again after a year or
so.  If I don't really have celiac disease, maybe I'll get better at some
point.

Regarding the third question, a quick search of the literature (MedLine)
produced hundreds of relevant articles from 1990 to now.  I haven't time
now to be thorough, but I didn't see any findings that answer my question
on gluten enteropathy due to an autoimmune effect versus a gluten allergy.

One study suggested that sub-clinical gluten enteropathy is quite common
(Gut 1992 Feb 33:2 194-7)  Another article found that gluten-sensitive
celiac-like symptoms may occur in patients with serum antiendomysium
antibodies, apparently normal intestinal mucosa, and HLA typing not
commonly associated with celiac disease [only 10 patients looked
at](Gastroenterology 1996 Sep 111:3 608-16).  Some authors suggest that
because of the recognized clinical heterogeneity of celiac disease, the
definition (as above) should be changed (Ann Allergy 1993 Jul 71:1 29-32).

 I'll keep at this after I get back from vacation next week.  At least we
can take heart that our problem is not being ignored by researchers.

Thanks for the feedback.

Reimar in Toronto

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