CELIAC Archives

Celiac/Coeliac Wheat/Gluten-Free List

CELIAC@LISTSERV.ICORS.ORG

Options: Use Forum View

Use Monospaced Font
Show Text Part by Default
Show All Mail Headers

Message: [<< First] [< Prev] [Next >] [Last >>]
Topic: [<< First] [< Prev] [Next >] [Last >>]
Author: [<< First] [< Prev] [Next >] [Last >>]

Print Reply
Subject:
From:
sandybill <[log in to unmask]>
Date:
Sat, 8 Dec 2001 10:37:38 -0800
Content-Type:
text/plain
Parts/Attachments:
text/plain (97 lines)
<<Disclaimer: Verify this information before applying it to your situation.>>

It seems like my first summary brought out all kinds of supporters of Dr
Fine, some of whom were quite evangelistic, and some of whom were
knowledgeable and quite rational. I did hear a lot about how disgusted some
of them were with the medical establishment and especially their
incompetency in the matter of celiac (certainly many of us are aware of
this disappointment) as well as some irrational accusations that none of
them were interested in treating patients with diet since they made no
money from that. (sigh) I decided long ago that I had no need to explain
problems with accusations of conspiracies or immorality when simple
incompetency explained it adequately :)

I think the best followup here would not be to send more of the often long
letters I received, but to send edited parts of a paper someone sent me
that recorded a talk Dr Fine gave. But perhaps I should mention here that
two people did write that they had been diagnosed at Baylor where he used
to work: one did not know of him at the time and did not encounter anything
about him there; the other said her experience was that they seemed to
respect his work and the doc she dealt with did not question his testing.

In his paper he explains the difference he makes between what he calls
"gluten sensitivity" and CD rather well. He also cites some apparently
solid studies to back up that choice.

I still haven't seen any such documentation for his testing methods, but
have to note that he does do it in a practical manner that keeps the costs
down and allows those from all over the country to get an assessment. The
paper also says: "Because Dr. Fine's research has shown that as many as 40%
of all Americans are gluten sensitive, and that 1 in 225 have celiac sprue,
a case can be made that everyone in America should be screened for gluten
sensitivity."

I would not argue that this cannot be true, but I would personally be
interested in seeing some documentation for this. I wonder if these figures
might be skewed because he is testing only those who already know they have
a problem in this area and send him samples. Yet, to be fair, his figures
as to how many have full fledged celiac disease seem to be in agreement
with the proportion normally reported.

I still haven't heard from anyone who knows of an instance where someone
sent in samples and were told they were not either gluten sensitive or had
CD. I've tried to mention what I still wonder about, but refrain from
offering my own personal opinion here since I'm still undecided and open to
more information. I hope this helps some out there to shape their own
opinion as to whether or not to work with Dr. Fine in the future. -vance

Here are some edited parts of Dr Fine's paper:

Traditional Definition of Celiac Disease

         Dr. Fine offered the traditional definition of Celiac Disease
in order to make a distinction between that traditional definition and
"gluten sensitivity."  Celiac disease (CD) is caused by ingestion of
wheat, barley, rye and oats that contain gluten and a subfraction
gliadin and prolamines.  Physicians look for symptoms or signs due to
malabsorption of fluids, electrolytes or nutrients;  small intestinal
histopathology (indicating damage on a biopsy); inflammation, broad and
shortened crypts, intra epithelial lymphocytes, villus atrophy; and
clinical improvement on a gluten-free diet. If someone is gluten
sensitive and goes on to become a celiac, they have a genetic signal
that tells the inflammatory cells to multiply, to send those into the
layer of cells on the tips, which leads to damage of the villi.  The
villi are responsible for absorbing fluid and nutrients and the crypts
and inflammatory cells are responsible for secreting fluids.  If you
take away the absorbing structure and increase the secreting structures,
you end up with malabsorption and eventually diarrhea. The disease
progression would usually show itself in weight loss, malabsorption of
nutrients, diarrhea, abdominal symptoms, etc. Now we have certain tests
that can identify gluten sensitivity well before the patient suffers
severe digestive symptoms. [one paragraph cut off at the end for brevity]

[He cites the following study as evidence] "Gluten Sensitive Diarrhea
Without Evidence of Celiac Disease", Cooper et al. Gastro 1980; 79:801.
This research paper confirmed that the celiac patients had explosive
watery nocturnal diarrhea, lost weight, no appetite, abdominal pain, but
none had steatorrhea or malabsorption, and all had normal blood tests.
When they looked at the biopsies, the villi were totally normal.  There
were some increases in inflammatory cells. The doctors put the patients
on a gluten-free diet and all patients improved.

[He also cites this study as evidence] "Gluten-Sensitive Disease with
Mild Enteropathy," Picarelli et al, Gastro 1996; 111:608.  Through blood
screenings these doctors identified ten patients who had the
antiendomysial antibody.  These patients had chronic diarrhea or
steatorrhea, or iron deficiency, or osteoporosis, mouth ulcers, low
calcium in the blood or high liver function tests, which all can be due
to gluten sensitivity. They did a d-xylose test which should be normal
if you have normal absorption, but 6 out of 8 were abnormal.  On a
biopsy, the villi were normal, but they did have slight increases of the
intra epithelial lymphocytes.  Further, they put the biopsy samples into
a petri dish, added a substrate of gliadin, and discovered the tissue
responded to gliadin.  They put these patients on a gluten-free diet;
all their symptoms and abnormalities resolved.  Therefore, this study
showed that you can have gluten sensitive disease with mild enteropathy
that does not fit the official criteria for celiac disease.

ATOM RSS1 RSS2