Dumb and Dumber

[Sheila]

I took a book out of the library, "The Autoimmune Connection", by Rita Baron-Faust and Dr. Jill P. Buyon. The section on celiac disease references Dr. Peter Green, clinical professor and director of the Celiac Disease Research Center at Columbia Univ.

I'm going to quote a passage from the book.

A small percentage of people with celiac don't respond to a gluten-free diet; their small intestines may be so damaged that they can't heal. Some people with celiac develop an associated autoimmune disease, lymphocytic colitis. "The intestine looks normal endoscopically, but on bioipsy is found to have lymphocytic infiltration. And that's a cause of failure to respond to a gluten-free diet," says Dr. Green. ..........................................................Related disorders include collagenous sprue, which resembles celiac disease but a thick layer of collagen is deposited beneath the inner lining of the intestines. This condition may not respond to a gluten-free diet and may require immunosuppressants.

As the kids would say, WTF? I wonder if Dr. Green has successfully treated a patient with MC. Tex and Polly and the other founders of our Microscopic Colitis Support Group have done more good for those suffering with MC than specialists and all of their degrees combined. I am seriously tempted to write the authors of this book and set them straight. When I read stuff like this it makes it hard to trust anything I read by so-called experts.

Sheila W

[tex]

Hi Sheila,

IMO the problem is due to 2 handicaps that Dr. Green is operating under. First, he is the Director of The Celiac Disease Center at Columbia University, and he's a Professor of Clinical Medicine at the College of Physicians there. But the biggest obstacle is probably the fact that he is considered to be a bona fide celiac expert. Physicians have already spent around 2,000 years unsuccessfully trying to understand celiac disease, so most of the "experts" are so shackled by obsolete, botched research, and mistaken conclusions and beliefs that they are almost forced to just go with the flow, and try to keep from rocking the boat too far at any point in time, hoping for an eventual breakthrough.

They should just throw it all out and start over, IMO. As a high-ranking and respected educator, he can't afford to stray too far from conventional wisdom, and of course conventional wisdom says that MC does not respond to a GF diet. Of course it doesn't, the other food sensitivities have to be removed also. And refractive celiac disease patients are in the same boat. By failing to also recommend the removal of casein and possibly other foods along with the GF diet, celiac "experts" (though obviously not all of them) pretty much guarantee that if a patient who is refractive to treatment doesn't already have MC, she or he is certainly headed in that direction.

And yes, I certainly agree with you that collagenous sprue and collagenous colitis are indistinguishable. There's no proof of that of course, and I'm beginning to wonder if anyone will ever get around to trying to correct that mistake, but these 2 ducks just happen to walk, and quack, and pretty much everything else as if they are identical twins.

Doctors don't like to admit that they created a new disease (collagenous colitis) when it actually was not new, and the problem with this situation is that collagenous sprue was apparently incorrectly described originally (as a disease of the small intestine), and collagenous colitis was incorrectly described as a disease of the colon (only). Trying to correct it may turn out to be Mission Impossible because collagenous sprue was originally described in 1947 — 29 years before collagenous colitis was described. Medical authorities are presumably flummoxed because the diseases are described as affecting different segments of the bowel, when virtually any patient who has MC can tell you that the disease clearly affects both the small and large intestine. Hell, I haven't had a colon in over 5 years now, and it was disconnected (leaving a distal stub) 4 years prior to that. And yet I had a reaction last November that could only be attributed to MC, because not only was my small intestine affected, but so was that short stub that was disconnected over 9 years ago. So I don't see that mistake ever being changed in the medical records, but maybe they will surprise me some day.

Anyway, those are my random thoughts on Dr. Green's dilemma. Surely, in his position he has to tread softly so as not to rock the boat too much and bring down the wrath of the entire celiac industry upon his shoulders. Can you imagine all the ruckus when all of his previous students realized that they had been taught invalid principles.

Tex

[UkuleleLady]

Thanks for the book review Sheila...sigh.

I won't be wasting my time on this read.

Nancy

[Lilja]

Sheila
If I were a U.S. citizen I would write him a letter, enclosing Tex' book.

These heretical doctors deserve some resistance, when they continue to serve us these myths. The worst thing is that they teach the next generation of doctors the same lies.

In 1986, a Norwegian journalist who experienced that his wife was slowly dying from him, took the battle with the Norwegian medicine world, as it was discovered later, that she was suffering from hypothyroidism and the Norwegian doctors could'nt figure out what she suffered from. The tests used by Norwegian doctors back then were poor and insufficient. During his period as a correspondent in Washington, it took the American doctor 5 minutes to find out what was wrong with his wife. Her ferritin-level was at that point 3 (!). The American doctor was furious, and had shouted "What are those imbeciles in Norway thinking!"

Back in Norway, the journalist raised hell. A few years after this, all the test procedures were changed, and the physicians had to apologize to the journalist and his wife in Norway's most selling journal. The stay in Washington litterarily saved his wife's life.

Oh, I wish my English was better... But I hope you get the essence.

Some times we have to go against Rome.

Lilia