Celiac Sprue: Just the Tip of the Iceberg

© 2006 by Lani K. Thompson and Clan Thompson

by Lani K. Thompson

Twenty percent of all Americans have some auto-immune problem – and “it’s almost certainly related to gluten sensitiviy”, Dr. Kenneth Fine told those who attended his “Intestinal Health…and Beyond” Conference in Dallas, TX last month. 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 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, a grain-based protein found in wheat, rye, barley, and oats. When celiacs eat gluten containing foods, 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, fatigue, pain in the bones or joints, unexplained weight loss, weakness, 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…we can actually identify people who seem to be gluten sensitive but never have the villous atrophy” that is seen in full blown celiac disease, he told his audience. When the antitissue transglutaminase Ab test was developed in the 1990’s, doctors thought it would rule in and rule out all disease. “Blood tests allowed us to pick up more disease, and in more people,” Dr. Fine said.

However, 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. 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 disease 31% of the time.

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. As a young researcher, he discovered 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.

“You have to get inside the intestine to see what’s going on immunologically,” Dr. Fine said. The best 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, and it is less invasive.

Comparison of Test Results for the Presence of Antigliadin Antibodies
Patient Group Blood Test Fecal Analysis

Untreated Celiacs 76% 100%
Microscopic Colitis 9% 75%
Symptomatic People 12% 57%
Asymptomatic People 11% 29%

What this means is 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, said Dr. Fine.

In a follow-up study, he looked at 7336 patients. 60% of them tested positive for gluten sensitivity and 57% of them had the celiac gene, compared to 42% in the general population.

“Who should be screened (for gluten intolerance)?” he asked. There are certain people at greater risk of developing gluten sensitivity. They include: people with microscopic colitis, Crohn’s Disease, 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, dermatitis 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.

(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 contact 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.

About Lani K. Thompson: Lani K. Thompson edits the Clan Thompson Celiac Newsletter which provides information about celiac disease to over 5,000 subscribers. She is also one of the partners of Clan Thompson, a company that publishes Celiac SmartLists – software programs that list thousands of gluten free products available in US and Canadian stores. You can download a free demo when you visit them online at www.clanthompson.com.