It is important to note that many people suffer from a wide variety of gluten intolerance symptoms without meeting the diagnostic criteria for celiac disease.
In many cases, individuals are in the early stages of celiac disease before severe bowel damage occurs. They will eventually progress to total villous atrophy if they continue to eat gluten.
In other cases, individuals suffer from gluten sensitivity and never develop villous atrophy. They are often referred to as “gluten-sensitive non-celiacs.”
Unfortunately, doctors usually only recommend the gluten-free diet to those with celiac disease with atrophy and this is unfortunate as it leaves many people unnecessarily suffering often for a lifetime. Many patients who have chosen another path have reaped the benefits of a gluten-free diet, even if it is not always easy to follow.
Dr. Kenneth Fine is one of many physicians recognizing that gluten sensitivity, without evidence of celiac disease, exists and can cause serious chronic disease. His (unpublished) research shows that gluten-sensitive non-celiacs are subject to many of the same risks and complications associated with celiac disease, including nutritional deficits and possibly an increased risk of developing other autoimmune diseases.
He has developed a fecal test available through his Enterolab laboratory which he claims can detect antibodies in feces long before they are present in the blood, and which can detect hidden gluten sensitivity that would not detect by traditional serological tests.
Here are some studies supporting the theory that antibodies are present in the gut before they are in the blood and supporting testing for fecal antibodies:
“The FFQT (Fecal Fat Qualitative Test) test for detecting fat in feces showed a sensitivity of 100% compared to the control group and it is possible to predict the cases of celiac disease and cystic fibrosis in 85.5% of cases and 89.9% of cases respectively. We conclude that these two tests (“Steatocrit method” and “FFQT method”) are reliable and complementary.”
” Qualitative test of fecal fat” and “steatocrit”, simple complementary methods for the evaluation of steatorrhea in childhood . Pediatr Med Chir. 1988 Jul-Aug;10(4):403-8.
“We have demonstrated ACE activity in human feces. ACE activity in feces appears to derive from microscopic villi in the intestinal mucosa, thus suggesting a useful potential for ACE to determine enterocyte damage.”
Angiotensin-converting enzyme activity in stools of healthy subjects and patients with celiac disease . Dig Dis Sci. 1996 Nov;41(11):2268-71.
The authors, of a study carried out in Germany, investigated whether authentic cases of irritable bowel syndrome could be secondary to latent (or potential) CD.
“None had detectable serum antibodies (AGA or tTG), but 30% had antibodies present in the duodenal fluid. Twenty-six “functional” patients were also treated with a gluten-free diet for 6 months. significant stool count was observed in subjects with an HLA-DQ2 genotype and specific antibodies detectable in duodenal juice that disappeared after dietary gluten avoidance.”
Celiac disease-like abnormalities in a subgroup of patients with irritable bowel syndrome .
Gastroenterology. 2001 Dec;121(6):1329-38.
“The presence of anti-endomysial antibodies (EMA) in fecal specimens represents in vivo evidence that the intestinal mucosa is the site of production of anti-endomysial antibodies. In addition, detection of EMA in fecal matter may be a simple, additional and effective tool to clarify the diagnosis in uncertain cases.”
Antiendomysial antibody detection in fecal supernatants: in vivo proof that small bowell mucosa is the site of antiendomysial antibody production . PMID 11808976 Jan 2002
“The most promising results in our study, having the highest concentrations in celiac disease, were obtained by fecal anti-gliadin scIgA antibodies and a combined delineation of fecal anti-gliadin IgA, IgG and IgM antibodies. A patient with a proven celiac disease histology had normal serological tests but elevated values in the fecal tests of scIgA AGA and scIgA ATA This patient demonstrates the importance of fecal antibody determination for the diagnosis of celiac disease, at least in patients patients with symptoms suggestive of celiac disease and negative serological tests”
Comparison of different salivary and fecal antibodies for diagnosis of celiac disease . PMID: 15481630 2004
“Celiac.com 01/29/2004 – A new cloning technique developed by Italian researchers could lead to more accurate diagnoses of celiac disease in patients whose case is uncertain including those who are asymptomatic. The technique detects antibodies against -tTG in the intestinal mucosa using a cloning process to amplify the antibodies, facilitating their detection even in cases where only small amounts are present.The technique is similar to that developed and used for some years by Dr Kenneth Fine d ‘Enterolab, because both techniques look for the presence of antibodies in the intestinal mucosa instead of looking in the blood.
One-step cloning of anti tissue transglutaminase scFv from subjects with celiac disease.
Sblattero D, Florian F, Azzoni E, Ziberna F, Tommasini A, Not T, Ventura A, Bradbury A, Marzari R.
“Our results support the concept that celiac disease antibodies are deposited in the mucosa of the small intestine before deterioration of this mucosa and before these are measurable without blood. This is consistent with the finding that celiac disease antibodies are produced in the intestinal mucosa and that mucosal samples from treated celiac patients produce EmA when challenged with gliadin peptides in in vitro organ cultures”
”It is expected that demonstration of villous atrophy of the intestinal mucosa, with crypt hyperplasia, will no longer be the gold standard in the diagnosis of celiac disease when diagnostic criteria expand to include genetic intolerance gluten”
Small-bowel mucosal transglutaminase 2-specific IgA deposits in celiac disease without villous atrophy: a prospective and randomized clinical study . PMID: 16036509 May 2005
IgA deposits specific to transglutaminase 2 in the intestinal mucosa in celiac patients without villous atrophy: a prospective and clinical study.
“A negative anti-endomysium (EmA) antibody test could still be associated with advanced celiac disease. Antibodies against transglutaminase 2 were found as deposits in the small intestine while these same antibodies were absent in the blood.”
Endomysial antibody-negative celiac disease: clinical characteristics and intestinal autoantibody deposits . Gut. 2006 Mar 29;
Celiac disease without serum anti-endomysium antibodies: clinical characteristics and autoantibody deposits in the intestine.
Other opinions regarding fecal tests:
Dr. Cynthia S. Rudert , is a practicing gastroenterologist in Atlanta, Georgia, specializing in celiac disease. She is attached to various support groups such as: the Celiac Disease Foundation , the Gluten Intolerance Group . She is Medical Director of the Gluten Sensitive Support Group of Atlanta and a member of the Celiac Standardization Group . Here is what she says about Enterolab faecal testing on the ClanThompson website.
“Dr. Kenneth Fine of Dallas is an eminent researcher and clinician. I had the pleasure of speaking to him at the recent International Celiac Congress held in Baltimore and he is also a founding member of the Celiac Standardization Group founded by Elaine Monarch of the Celiac Disease Foundation (CDF).”
“His lab, Enterolab, makes genetic testing and fecal testing for gluten sensitivity and celiac disease available to the public. I have recommended his lab to my patients and we have used his services.”
“I certainly agree with you that the tests we are currently using are less than ideal. I have spoken to other celiac disease specialists who believe that potentially up to 20% of celiacs can be seronegative. Also, physicians should be aware that transglutaminase antibody positivity correlates with the degree of atrophy. It is amazing how many individuals test negative because they do not only have mild damage that will never progress to total atrophy.”
Dr. David A. Nelson , JR, MD, MS, author of “Gluten-Sensitive Enteropathy: Much More Common Than You Think” Dr. Nelson is a professor of family medicine at the Arkansas University for Medical Sciences.
“Faecal antibodies apparently originate from antibodies secreted in the small intestine. The only place that I know of where tests for this can be obtained is at the Enterolab laboratory.from Dr. Kenneth Fine in Dallas and his prices are reasonable. However, you may have problems with your insurance company to get reimbursed and you may also have difficulty with your doctor who may not want to give credibility to these tests. I too was skeptical at first but am now sold on the idea of antibodies secreted in the gut or faeces. I have never met Dr Fine (I will one day) but I have heard of him and we have emailed on several occasions and he has always been friendly if a little evangelical in his discussion.”
“Several recent articles have led me in this direction but the most persuasive was an article describing a study conducted in Germany by a group of researchers led by Dr. Ulrich Wanschaffe entitled: Abnormalities suggesting celiac disease in a -group of patients with irritable bowel syndrome (GASTROENTEROLOGY 2001;121:1329–1338) Celiac Disease-like Abnormalities in a Subgroup of Patients with Irritable Bowel Syndrome .”
who are seronegative (negative blood tests) but with secretion of antibodies in the gut. This type of test might also be more sensitive than a biopsy. “
“Although this study relies on antibodies secreted in the duodenal fluid, this idea that these antibodies can ultimately end up in the feces makes a lot of sense to me.”
“Not being an evangelist myself, I nonetheless predict that within a few years we will have an FDA-approved test to screen for fecal antibodies.”
Dr. Scott Lewey , a Colorado gastroenterologist and physician with the local Celiac Disease Group also tells us about Enterolab’s fecal tests.
“Enterolab’s fecal tests for detecting anti-gliadin and anti-transglutaminase antibodies, although not widely accepted, have gained public favor as an option for determining gluten sensitivity either when testing negative and/or biopsy negative or either to replace the more invasive tests Most doctors still recommend accepted blood tests and bowel biopsy to confirm celiac disease Although public reports are overwhelmingly positive they have not been endorsed, through published studies, by the medical community that expects Dr. Fine to publish his data or other researchers to replicate the same results.”
“However, physicians open to the broader issue of gluten sensitivity have reported finding these tests useful for many patients suspected of having gluten intolerance. Especially when some patients have symptoms consistent with gluten sensitivity but have negative or inconclusive blood tests and/or negative or inconclusive biopsies, then these tests can be of great help although some are not too sure about how to interpret the tests National celiac organizations are hesitant to comment on their application without published research while a recent article in the British Medical Journaldemonstrated that faecal tests have a high specificity in detecting celiac disease. Dr. Fine has publicly stated that his unpublished data demonstrates that those with an abnormal fecal test indicating gluten sensitivity respond very favorably to the gluten-free diet resulting in remission of symptoms and an improvement in their overall quality of life. “
“In the meantime, many patients are wondering whether the questionable effectiveness of traditional blood tests and intestinal biopsy as well as the presence or absence of DQ2 and DQ8 to confirm or rule out gluten sensitivity justify the uncertain and additional cost comprehensive genetic testing and fecal testing Physicians unfamiliar with these tests are increasingly confronted with the results and are confused or skeptical as they await the publication of studies There is also a lack of consensus in the medical community regarding the definition of gluten sensitivity without celiac disease and also with regard to the definition of the relevant tests that can justify a recommendation for a gluten-free diet. It is obvious in any case that gluten sensitivity, regardless of the diagnostic criterion,is much more widespread than believed and that a hidden epidemic exists.”