After so many years of delay, many of us have wondered why Dr. Fine's further research has not been published. I think I may have the answer. Bear in mind that this is just my opinion, based on the circumstantial evidence that I have seen, over the intervening years, but additional evidence has come to light recently, that appears to be very illuminating. The following quote comes from a newsletter that I received today, published weekly by http://www.glutenfree.com/. You can register there to subscribe to the newsletter, if you wish to do so. Beth is a nutritionist who answers reader's questions on products and celiac issues, submitted as e-mails.
Okay, I'm just an ignorant old country boy, with no formal medical training, but even I can easily see through their thinly veiled claims, to clearly discern that there is no substance in their position. IOW, if this is an accurate representation of their interpretation of the basis upon which Dr. Fines work should be discredited, then it appears that Dr. Fine may be blocked from publishing, simply because of unfair attitudes, (prejudices?), among his peers, who are in positions of power. Notice the reasons mentioned by the esteemed doctors who were quoted above, to justify their blanket condemnation of the test procedures used by Enterolab:Q1.Dear Beth,
What do you know about Enterolab? They do testing on a stool specimen that indicates whether you have active auto-immune gluten sensitivity, as well as milk intolerance. They also perform a testing for genes of celiac gluten intolerance and non-celiac gluten intolerance. Thanks, Winfry
A1. Dear Winfry,Sorry for the delay in answering your question. I know the tests performed by Enterolab are controversial in M.D. circles and did not feel qualified to answer your questions without asking some physicians to add their input. I forwarded your e-mail to several of the distinguished physicians who are members of the American Celiac Disease Alliance: Peter Green, M.D. director of the Celiac Disease Center, Columbia University; Stefano Guandalini, M.D., Professor of Pediatric Gastroenterology, University of Chicago Comer Children's Hospital; and Martin F. Kagnoff, M.D., The Warren Celiac Center at UC San Diego. Here’s what they said:
“There is no scientific validation in the stool tests performed and sold by Enterolab in the diagnostic process of celiac disease or "gluten sensitivity". Their website quotes "immune sensitivity to gluten is exceedingly common, present in 30-40% of all Americans" which is enough to tell what level of scientific accuracy they reflect!
The same applies to their way of testing for milk protein allergy (not lactose intolerance, which is a digestive deficiency they do not test for).
Regarding their tests for tTG and anti gliadin antibodies in stool, most with celiac disease have positive antibodies in stool, though not all and some non celiacs have positive antibodies as well. We however do not know the number of non celiacs (normals, or those with reported gluten sensitivity) that have these antibodies. It is not a standardized test. Also I have seen reports from their lab about these non celiac, gluten sensitive genes. I have never heard of these from any other source.” Hope this information is helpful. Beth
1. “There is no scientific validation in the stool tests performed and sold by Enterolab in the diagnostic process of celiac disease or "gluten sensitivity".
2. Their website quotes "immune sensitivity to gluten is exceedingly common, present in 30-40% of all Americans" which is enough to tell what level of scientific accuracy they reflect!
3. The same applies to their way of testing for milk protein allergy (not lactose intolerance, which is a digestive deficiency they do not test for).
4. Regarding their tests for tTG and anti gliadin antibodies in stool, most with celiac disease have positive antibodies in stool, though not all and some non celiacs have positive antibodies as well.
5. We however do not know the number of non celiacs (normals, or those with reported gluten sensitivity) that have these antibodies.
6. It is not a standardized test. Also I have seen reports from their lab about these non celiac, gluten sensitive genes. I have never heard of these from any other source.
Allow me to shed a little light on each one of those claims, individually, in the order in which they are listed:
1. This claim is 100% wrong - the procedure used by Enterolab has indeed been validated by an independent laboratory in Italy, and the report was published in the February, 2004 issue of the Journal of Autoimmunity. Here is part of what Scott Adams, the founder of Celiac.com, had to say about the discovery:
The new technique is similar to that developed and long utilized by Dr. Kenneth Fine of Enterolab, in that both techniques look for the presence of antibodies in the intestinal mucosa rather than in the blood. The new technique also has the potential to easily screen large numbers of people, which, if the researchers are correct, will lead to a celiac disease diagnostic explosion, as those who are missed by current screening methods will be properly diagnosed. The number of celiacs who are missed using current screening techniques is a topic of debate, and Dr. Fines methods have demonstrated that "in normal people without specific symptoms or syndromes , the stool test is just under three times more likely to be positive than blood tests," as reported in the Winter 2004 edition of Scott-Free newsletter. It would be very interesting to see how many people test positive in a healthy population using this new technique.
http://www.celiac.com/articles/740/1
Here's an abstract of the original article:
http://www.sciencedirect.com/science?_o ... e510afeeb3
2. How pathetic - instead of offering scientific evidence, these "scholarly" gentlemen choose to discredit the work by trying to make fun of it.
3. Another irrelevant remark. Apparently these "experts" don't even recognize the significance of the differences between digestion issues caused by an enzyme deficiency, and an autoimmune reaction. If they do know the difference, then they are "conveniently" ignoring it, for the purpose of enhancing their "misguided" claims about Enterolab, which would be rather disingenuous of them, if true.
4. This is mostly true, and it's the first intelligent statement to appear in their response. It's also one of the primary justifications for stool testing in the first place.
5. Here is where they proudly confess their ignorance again, and therefore admit that they lack the proper qualifications for making the judgments that they have so brashly presented, in the first place. They claim to be experts on celiac disease. So why haven't they done the research to answer those questions? Obviously, such knowledge would be a very valuable addition to their knowledge base, regarding the detection and treatment of celiac disease.
6. They continue to admit their ignorance. "It is not a standardized test." Well duh! Why on earth would they expect new technology to be a standardized test? That's why it's patented - because it's not the same old obsolete technology that they're familiar with.
"I have never heard of these from any other source." Of course, their ignorance is an irrelevant point, in relation to new technology, but in this case, prior documentation does exist. Instead of disputing new technology, maybe these guys should be doing a little more research to see what has already been discovered and reported in the literature. Not only has Dr. Fine discussed these genetic issues, but the HLA DQ1 marker has also been discovered by Dr. Mario Hadjivassilou, as being associated with a non-Celiac form of gluten sensitivity. While those who carry HLA DQ1 rarely show villous atrophy, it does occur in some cases. Since about 1-2% of biopsy-proven celiacs carry the HLA DQ1 gene, it would seem be a rather dubious practice to rule out Celiac Disease, solely because of the absence of the main genes, (HLA DQ2, or HLA DQ8). While most celiac experts twiddle their thumbs, and fail to recognize the HLA DQ1 genetic markers as being associated with celiac disease, Dr. Hadjivassilou has found HLA DQ1 in about 20% of his gluten sensitive, (antigliadin positive), neurological patients. The remaining 80% have either HLA DQ2, or HLA DQ8, consistent with the general celiac population. Dr. Hadjivassilou is a well-known neurologist located in England, with over 40 published medical research articles to his name. Here's a quote from "Gluten sensitivitiy as a neurological Illness" by M Hadjivassiliou, R A Grunewald, G A B Davies-Jones:
Also, remember that virtually every pioneer who has made a valid scientific "breakthrough" discovery, since the beginning of recorded history, has almost always garnered seemingly endless ridicule, contempt, denials, etc., from his or her peers. "Experts" are almost always suspicious of new and contradictory claims, by their very nature, (and rightly so, because many false claims are made), and it may also be true that they are somewhat "jealous", of any Johnny-come-lately who tries to steal the spotlight, by trying to "horn in" on their territory, so they may subconsciously feel obligated to do all they can, to keep new technology from replacing their old, familiar concepts. Interestingly, I can't keep from wondering if this tendency might be somehow related to the basic breeding competition, so prominent among representatives of many species, who compete so fiercely, in order to assure that their genes are passed on, rather than the genes of their "competitors"."Within the group of patients with neurological disease and gluten sensitivity (defined by the presence of anti-gliadin antibodies) we have found a similar HLA association to that seen in patients with CD: 70% of patients have the HLA DQ2 (30% in the general population), 9% have the HLA DQ8, and the remainder have HLA DQ1. The finding of an additional HLA marker (DQ1) seen in the remaining 20% of our patients may represent an important difference between the genetic susceptibility of patients with neurological presentation to those with gastrointestinal presentation within the range of gluten sensitivity."
Have you noticed the strong odor of something "fishy" in the position of the medical community as a whole, on this body of work? It may just be the odor of prejudice, but it could also be tainted with the smell of greed. Dr. Fine holds U. S. and international patents on all his tests, and the concept involved, and since he's not licensing it to anyone else, (including the Italian lab, where the results were verified), and big pharma is also shut out, no one in the medical industry can figure out how they might get their slice of the pie, so it is understandable how they might be bitter, and why they might be vehemently opposed to seeing Dr. Fine's lab, and his research, become an accepted and prominent part of their world. Of course, as we all know, maybe I'm just overly suspicious.
The bottom line is, despite my non-medical background, it didn't take me long to locate convincing proof that disputes each and every point they presented in their most disappointing response to Beth's e-mail, when she asked for their opinion. Why couldn't they find that information? They're the ones who are supposed to be the experts.
And, if you want to talk about celiac specialists tending to be behind the times, consider this quote, from the 2004 book The Neurology of Gluten Sensitivity: Science vs. Conviction, by Hadjivassiliou and Grunewald. Obviously, Dr. Fine is not the only one who thinks that the celiac "experts" are only diagnosing "the tip of the iceberg". Despite all the incriminating evidence listed here, I'm not claiming that Dr. Fine is the victim of a conspiracy of some sort, but the facts sure do look suspicious, don't they.The prevalence of coeliac disease itself is now recognized to be 20 times higher than what it was thought to be 20 years ago because most cases are clinically silent.
Tex
Set them straight.