Celiac Disease - Tip of the Iceberg - presentation by Dr. Kenneth Fine

Here is a much more complete analysis of Dr. Fine's talk than I could ever write.  I think this is well done.

Anne Barfield
www.chickenparadise.com

Copyright 2006 by Clan Thompson
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CELIAC DISEASE: Just the Tip of the Iceberg

A Report on Dr. Kenneth Fine's Conference in Dallas - March 4, 2006

by Lani K. Thompson

Twenty percent of all Americans have some auto-immune problem - and "it's almost certainly related to gluten sensitivity", Dr. Kenneth Fine told a group of doctors, nurses, nutritionists, celiac patients and other interested people who attended his "Intestinal Health...and Beyond" Conference in Dallas, TX between March 3-5. That's because there's an increased risk of other auto-immune diseases developing in a person with celiac disease when the diagnosis is made later in life, as it often is in America.

Dr. Fine's lecture was called "Early Diagnosis of Gluten Sensitivity Using Fecal Testing: Report of an 8-Year Study" and it was the focal point of the weekend. In it, he discussed the spectrum of gluten sensitivity vs. celiac disease, the shortcomings of blood tests and biopsies for gluten sensitivity, and how stool testing has overcome these shortcomings and revealed the problem to be more extensive than previously known.

Celiac Disease, also known as celiac sprue, is an autoimmune disorder. In order to develop celiac disease, a person needs to have the celiac gene, some kind of "trigger" or activation of the gene, and be eating ! gluten. People with celiac disease can't eat gluten, a grain-based protein found in wheat, rye, barley, and oats. When they do, the protein sets off an immune response that causes damage to their small intestine. Symptoms of celiac disease vary widely, as do their severity. Some people don't have any symptoms at all. Others may experience diarrhea, bloating, abdominal cramping, anemia, fatigue, muscle cramping, pain in the bones or joints, unexplained weight loss, weakness, decreased ability to clot blood, osteoporosis, depression, mood changes, and more. There is no cure, but the disease can be treated with a gluten free diet. However, not everyone who gets better on the gluten free diet has celiac disease, said Dr. Fine. "Celiac sprue is just the tip of the iceberg of gluten induced disease".

"We now know, not only is there this spectrum of change in the intestine and in the symptoms, but that we can actually identify people who seem to be gluten sensitive but never have t! he villous atrophy" that is seen in full blown celiac disease, he told his audience. Reports of gluten sensitivity with no villous atrophy - or intestinal damage - have been around since the early 1980's, but when the antitissue transglutaminase Ab test was developed in the 1990's, doctors thought it could rule in and rule out all disease. "Blood tests allowed us to pick up more disease, and in more people," Dr. Fine said.

However, he continued, Celiac Sprue is really the end disease and it is only in the end stages of this disease that doctors have 100% reliability of the tests currently used to diagnose it. A positive biopsy or blood test result means you have the disease, but a negative result does not mean you are fine. In fact, each of the two blood tests that are commonly used to make a diagnosis are only accurate 59% of the time and, in celiacs with only partial villous atrophy, the antigliadin and anti-endomysial antibodies tests were only able to detect the di! sease 31% of the time.

Celiac disease was first written about by Aretaeus the Cappadocian in 100 AD. However, not much was known about the disease until the past few decades. Now some doctors think that undiagnosed celiac disease may be as common as 1 in 130 people. Before he founded the Intestinal Health Institute and EnteroLab.com, Dr. Fine studied microscopic colitis, an inflammatory disease of the colon in which the body's immune system starts to attack the bacteria living in the colon. Colitis can cause the body's immune system to react to gluten.

Dr. Fine used slides to show how the pathology of microscopic colitis is virtually identical to celiac sprue. When the pathology occurs in the small bowel, it's celiac disease. When it occurs in the large bowel, it's microscopic colitis. However, because the patient doesn't usually have fully developed celiac disease, diagnostic tests, like blood tests, are usually negative. The first study Dr. Fine ever did, as a young researcher, was to try to figure out why there seemed to be an overlap between the different syndromes of microscopic colitis and celiac sprue.

What he discovered was that 64% of people with microscopic colitis have the celiac-like genes of the HLA which is DQ2 and most of the others had another set of genes that had never before been reported in an inflammatory condition associated with gluten sensitivity.

"We had an apparent celiac-like gene genetic predisposition and, perhaps, a new set of genes making their first appearance," Dr. Fine said. When they looked at the small bowel biopsies, they found they were abnormal in 70% of the patients...but it was not celiac disease. There was no villous atrophy and, when they looked at the blood, there were no more antigliadin antibodies than there are in the general population.

"So, here I was scratching my head. What were all of these celiac genes doing in these microscopic colitis people? Why does the biops! y look like celiac disease?" He found a study comparing the presence of antigliadin antibodies inside the intestine to antigliadin antibodies in the blood.

Patients with celiac disease showed these antibodies in both the blood and the small intestine. Normal people had no antibodies in their blood or in their small intestine. Celiacs who followed a gluten free diet for one year tested negative for antibodies in the blood but positive for antibodies in the intestine. So, when there is mild intestinal damage, there are antigliadin antibodies in the intestine.

This was such an important finding that researchers developed a technique to try to detect the antibodies without having to insert a long tube into the small intestine. They had the patient swallow a short tube that went into the stomach, pumped twenty gallons of fluid through to clean everything out, then looked for the antigliadin antibodies. This was considered a relatively non-invasive screening test for cel! iac sprue and was used for many years!

"You have to get inside the intestine to see what's going on immunologically," Dr. Fine said. A less invasive way to do this is through fecal analysis. Fecal analysis is superior to blood testing because it is more sensitive to the presence of the offending proteins.

Comparison of Test Results for the Presence of Antigliadin Antibodies

Patient Group Blood Test Fecal Analysis
Untreated Celiacs 76% 100%
Microscopic Colitis 9% 75%
Sympomatic People 12% 57%
Asymptomatic People 11% 29%

"That was an extremely important finding in my career. What this meant was that...at a minimum, 29-30% of the general population and 50-75% of people with irritable bowel syndrome, microscopic colitis, perhaps other forms of inflammatory bowel disease and autoimmune disease" have these antigliadin antibodies in their stool.

In a follow-up study, Dr. Fine looked at 7336 patients. 99.4% of them were sick and/or sympto! matic and 60% of his patients tested positive for gluten sensitivity.

42% had autoimmune disease
21% had irritable bowel syndrome
20% had a family history of celiac disease or gluten sensitivity
6% had microscopic colitis
2% had chronic fatigue
8% had weight loss, headaches, autism, ADD, or other disorders.

Of the patients in this study, 57% of them had the celiac gene and only 0.07% had no predisposing gene at all. In the general US population, 42% of people have the celiac gene and only 0.4% have no predisposing gene at all.

"Who should be screened?" asked Dr. Fine. There are certain people at greater risk of developing gluten sensitivity. They include: people with microscopic colitis, Crohn's Disease, Ulcerative colitis, Irritable Bowel Syndrome, relatives of those with gluten sensitivity, those with hepatitis C, Down's Syndrome, Gastroesophageal reflux disease, seizure disorders, short stature in children, autoimmune liver disease, derma! titis herpetiformis, Type I diabetes, Rheumatoid arthritis, Sjogren's syndrome, Lupus, Autoimmune thyroid disease, Aids, Peripheral neuropathy, and autism.

Unlike other tests for gluten intolerance, Dr. Fine's new stool test is not invasive and his own research shows that it's more sensitive than other tests, too. It can help identify gluten sensitivity before significant intestinal damage is done, before other complications and autoimmune diseases can develop, and before gluten intolerance becomes full-fledged celiac sprue.

(Note: Slides from Dr. Fine's keynote address from the conference have been posted at www.EnteroLab.com. Click on the "Research and Education" link for the slides and a related essay. To obtain a DVD of the conference, you may email requests for them to orders@intestinalhealth.org. Include your name, mailing address (U.S. mail) phone number (to contact you when they are completed), and email address. The Intestinal Health Institute will contac! t you when they are ready. The cost is $49.95 + S/H.)

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About Dr. Kenneth Fine: Dr. Fine is the Medical Director and Director of Operations for EnteroLab.com Reference Laboratory, the Director of Operations and Director of Medical Research for Intestinal Health Institute and Director of Operations and Chief Consultant for FinerHealth and Nutrition. You can visit him online at www.EnteroLab.com, www.finerhealth.com or www.intestinalhealth.org.