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CELIAC  December 2001, Week 1

CELIAC December 2001, Week 1

Subject:

SUMMARY: Does Dr Fine tell some patients they are not celiac?

From:

sandybill <[log in to unmask]>

Date:

Fri, 7 Dec 2001 14:52:32 -0800

Content-Type:

text/plain

Parts/Attachments:

Parts/Attachments

text/plain (126 lines)

<<Disclaimer: Verify this information before applying it to your situation.>>

I started this discussion when I wrote the following:

 >I've seen several on this list who have sent the same message, that Dr.

Fine had successfully diagnosed them as celiac. As an item of idle
curiosity, has anyone been told they did NOT have CD by Enterolab? -vance<

 From this question I have received several rather emphatically positive
replies generally in favor of Dr Fine, but only a four replies that seemed
to be pertinent. I have edited out a lot of other information, for instance
about how much help he'd been in finding other food sensitivities, and I
tried to leave in that part that was pertinent to the question and the
reason for it. One person replied that her nephew had tested negative by Dr
Fine. And a second person replied that her nephew had been told he did NOT
have CD by Dr Fine. However, the second was also told that he was "gluten
intolerant." Apparently Dr Fine believes that "gluten intolerance" and
"celiac disease" are not the same thing. If there is no evidence of
malabsorption he says it's not CD. Prior to this, everything I've read or
heard from other celiac docs use those two terms, and several others,
interchangeably as synonyms.

Finally, one person wrote that she had done some preliminary but quick
investigation of Enterolab, and her post is found at the end of this summary.

I must also say that several others on the list, and I, note the difficulty
of this question, with the caveat that if they are told they are not CD,
then they may no longer be on this list. However, after reading the posts,
I began to think it's not such a problem as I first believed since he
appears to believe that 90 percent of caucasians are what he calls "gluten
intolerant" if not actually celiac. So those who are "gluten intolerant"
may still be on this list. Or not :)

-vance

Here is the post from the first person whose nephew had tested negative:
(note in this one there is no accompanying diagnosis of "gluten sensitivity)

First Person: "I can say that I know someone who tested negative by Dr.
Fine's lab. My 7 year old nephew had a problem with small amounts of
stool leaking out all day (along with many other symptoms such as being
rail-thin and always with a runny nose). He'd had this problem for
several years. His mom had found out he was soy intolerant and I thought
perhaps he had CD since it's in the family. So, at my urging, he was
tested by Dr. Fine and had negative results. Not only was the stool
negative, the gene test was negative! You could have knocked me over
with the infamous feather!"

Second person who had a nephew in the family test negative at Dr Fine's:
But . . . .

Second Person: "Yes, my nephew was told by Enterolab that he did not have
celiac disease.

However, he did test positive for gluten intolerance, milk protein
intolerance and yeast intolerance. Also, he has MILD intestinal malabsorption.
He was advised to avoid the above foods. Since doing so he has done a
complete turnaround. Enterolab was a godsend as he was getting nowhere with
different doctors and specialists.

FWIW, he was also found to have one of the genetic markers that puts him at
risk for developing celiac disease - not surprising since celiac disease
runs in our family.

Third person who was diagnosed along with her daughter as not having CD,
but did have "gluten sensitivity":

Third Person: "I was tested for Celiac disease along with my 8 yo by
EnteroLab after my 18 mo old was diagnosed by a blood test. Our tests said
we had a "gluten sensitivity". I went ahead and had a malabsorption test
done, and it came back neg. (my 8yo, however, did show absorption
problems). Hope this helps... "

I wrote back and asked her:

So are you saying that you both tested positive for CD, or does he make a
distinction between "gluten sensitivity" and CD? -vance

And she replied:

Third Person again: "He does make a distinction between the two. On his
web site he states, "Gluten sensitivity implies that a person's immune
system is intolerant of gluten in the diet and is forming antibodies or
displaying some other evidence of an infammatory reaction. When these
reactions cause small intestinal damage visible on a biopsy, the
syndrome is called celiac disease." For my situation, I understand it to
mean that my body reacts to gluten (I feel crappy) but it does no damage
to my gut (neg on the malabsorption test). So no, I don't have the
actual disease, but I do react to gluten."

And finally, here is a post from someone who has looked into this a little
more than most of us:

"When I started researching celiac after seeing it on the about.com thyroid
forum, I saw Dr Fine's name and tried to track him down. I found his name
somewhere on the net and it associated him with Baylor University. So I
looked up the where he worked and found that he was no longer connected
with Baylor. I was told that he was no longer associated with Baylor and
the woman's tone of voice told me they did not agree with him and were glad
he was gone. I told her that I was looking for someone who could test me
for celiac. She suggested I call back and talk to the head GI researcher
since he was not in at the time. I called back and was not referred to Dr.
Fine for celiac testing.

I then tracked down the phone number for Dr Fine's lab(actually I thought
it was his office) and a man who said he was in charge of the lab. He
seemed like he had plenty of spare time and so I started chatting and asked
lots of questions. I learned several things. He told me he had a PhD (can't
remember in what but what struck me was that it was not in medicine or
science). I learned that he was an immigrant from an African country.
He told me that 90% of white people were gluten sensitive.

Dr Fine has at least 3 websites: drfine.com / finemd, finerhealth and
enterolab AND 3 organizations/appointments : Finer Health and Nutrition,
Enterolab and Intestinal Health Institute which is a 501 (c) 3 research
organization and accepts donations for some vague "research". You send
contributions to a PO box.

He states that his stool tests are more accurate than blood tests and skin
tests ([however] skin tests do not test for celiac). I don't know of any
reputable lab or physician who uses stool analysis to test for celiac. He
doesn't give any information as to why his methods are better.
He offers a genetic test while no one who has to get funding for their
research suggests a reliable genetic test is now available.

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