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TOPIC: Gluten Sensitivity Baffles Celiac Specialists

Gluten Sensitivity Baffles Celiac Specialists 25 Oct 2010 15:31 #622

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Gluten Sensitivity Baffles Celiac Disease Specialists

From Gastroendo News Oct 2010  (hit link to view entire article)

Katherine Maxwell’s first symptom appeared when she was 4 months old. She developed serious and chronic diarrhea after her mother fed her a new baby formula. She ended up hospitalized for a month. As she grew, Ms. Maxwell experienced other strange health problems that appeared without warning. She had diarrhea more often than not. Painful canker sores appeared in her mouth, and rashes developed on her legs. She experienced extreme fatigue as well as nausea and asthma.
She saw several different specialists, including a gastroenterologist who tested her for celiac disease when she was 13 years old. The results were negative.

Throughout her 20s and 30s, her health deteriorated. Her headaches developed into chronic migraines. She struggled constantly with fatigue. An allergist told her she was allergic to milk. Several gastroenterologists told her she had irritable bowel syndrome (IBS) associated with stress. One recommended that she increase her fiber intake to prevent diarrhea. She was tested again for celiac disease, and again, the results were negative.

“My health was horrendous,” said the now 37-year-old teacher in Arlington, Va. “It’s humiliating to go from doctor to doctor and be told, ‘You’re just stressed out; you should see a psychiatrist.’ [/suP]”

Last spring, a friend—a nurse with celiac disease—suggested that Ms. Maxwell had non-celiac gluten sensitivity. “ [/suP]‘You have all the symptoms of celiac and some people just never test positive,’ [/suP]” Ms. Maxwell recalled.

Ms. Maxwell turned to the Internet to find out more about this condition she’d never heard of. She decided to give up gluten to see if it would help. Her symptoms improved.

“For me, [giving up gluten] was life-changing,” she said.

“Thank goodness for the Internet,” she added. “I saw so many doctors who never asked me about gluten sensitivity, including one who suggested I eat more fiber to stop my diarrhea. So I started eating more bread.”

Gluten Sensitivity Goes Mainstream

The exact source of Ms. Maxwell’s health problems remains unknown but it may be that she is one of millions of Americans who suffer from non-celiac gluten sensitivity, sometimes known as gluten intolerance.

Although estimates vary about the true prevalence of gluten sensitivity (the highest figures suggest about 15% to 20% of the population), the Center for Celiac Research at the University of Maryland puts the incidence at 7%, or 20 million Americans. Thus, it appears that the condition is far more common than celiac disease, which affects about 1% of Americans.

“I see patients with gluten sensitivity frequently, very frequently. It’s become very common compared with 10, 15 years ago,” said Ciarán Kelly, MD, professor of medicine at Beth Israel Deaconess Medical Center, in Boston.

“I wish I knew why [the sudden increase]. I think it’s due in part to better awareness. However, having said that, there is no question that there are more people with gluten sensitivity today,” Dr. Kelly said. “My own suspicion is that components of gluten-containing foods are relatively indigestible, but that’s only speculation.”

As awareness increased during the past decade and a half, so, too, has the gluten-free food industry—which further helped push the issue of gluten into the mainstream.

Gluten-free products now represent the second fastest–growing segment of the U.S. food industry, edged out by GMO-free foods, according to a 2009 report from the Nielsen Company. Last year, gluten-free product sales topped $1.6 billion—representing the sixth straight year of increases of 20% to 25% or higher.

That’s a dramatic change from 15 years ago when most Americans, outside of those diagnosed with celiac disease, had never heard of gluten.

Even gastroenterologists had a poor understanding of gluten and celiac disease.

“Doctors for years were saying to patients, ‘You can’t have celiac disease—you’re too fat, you’re too tall, you’re too bald,’—because doctors had preconceived ideas about what people with celiac disease look like,” said Peter H. R. Green, MD, professor of clinical medicine and director of the Celiac Center at Columbia University Medical Center, in New York City.

Misconceptions included theories that only children and adults of northern European descent developed celiac disease, and that the symptoms of gluten intolerance were evident only in the gastrointestinal (GI) tract, said Alessio Fasano, MD, professor of pediatrics, medicine and physiology at the University of Maryland School of Medicine and medical director at the university’s Center for Celiac Research, in Baltimore.

“All those were 100% wrong. We know now that kids are only a small portion of the celiac population, that every ethnicity is at risk and that most frequently these people present with symptoms that have nothing to do with the GI tract,” said Dr. Fasano. “What is clear to us now [is that] there is this big family of gluten sufferers—people of all shapes and sizes and symptoms who suffer several forms of gluten intolerance, including celiac disease, wheat allergy and gluten sensitivity,” he said.

The medical community’s understanding of gluten sensitivity today is where celiac disease was 10 years ago—it’s only now just beginning to register as a bona fide and common condition. Relatively few published reports address the issue; most of the literature is based on case studies or poor-quality data, and the patient population is largely unidentified, said Dr. Green.

“If a patient comes in and says he or she has gluten sensitivity, most doctors probably think, ‘Where’s the psychiatrist?’ There’s nothing taught about it and it’s not a currently measurable thing,” Dr. Green said. “A few celiac [disease] experts initially rolled their eyes and said, ‘We don’t get into that. There’s enough work to do to increase the diagnosis of celiac disease without including this condition that’s harder to define.’ But pressure is now on because the public is aware of it.”

“No Man’s Land” of GI Disorders

In a 2009 paper published in The American Journal of Gastroenterology, Elena Verdœ, MD, PhD, of McMaster University, and colleagues wrote that gluten sensitivity does not meet the diagnostic criteria for celiac disease or IBS, although all of them may share common symptomatology and etiology.

“Recent clinical observations support gluten sensitivity as a mechanism underlying the generation of GI symptoms that would otherwise be considered diagnostic of IBS,” they concluded (Am J Gastroenterol 2009;104:1587-1594). They titled the report, “Between celiac disease and IBS: the ‘no man’s land’ of gluten sensitivity.”

Up to 130 different symptoms are associated with gluten sensitivity and virtually every tissue in the body can be affected, said Stephen Wangen, ND, chief medical officer and founder of the IBS Treatment Center and Center for Food Allergies in Seattle, who, in addition to being gluten-sensitive, has a large population of gluten-sensitive patients. “Villous atrophy is just the tip of the celiac disease iceberg, and celiac disease is only a small part of the even larger gluten intolerance iceberg,” he said. 


Specialists in the field generally divide gluten sensitive individuals into three categories. The first and most severe category of the gluten-related disorders is celiac disease. Celiac disease is diagnosed by a positive biopsy that identifies damaged villi in the small intestine. But the vast majority of patients with celiac disease remain undiagnosed. One report suggests that only 10% to 15% of celiac disease cases in the United States are diagnosed compared with 50% in Australia and 70% in Finland (Rostom A et al. Gastroenterology 2006;131:1981-2002).

The second category of gluten-sensitive individuals is made up of people who have wheat allergy. Several hundred thousand Americans have confirmed wheat allergies, said Dr. Fasano.

The third category comprises individuals with gluten sensitivity. By far the largest group, it’s also the most controversial and least understood of the gluten-related disorders. In its broadest definition, the term “gluten-sensitive” is used to classify people who have symptoms that subside when they stop eating gluten but do not show inflammation on duodenal biopsy.

Baffling Problem

Adding to the complexity of gluten-related disorders is that gluten sensitivity, with its myriad of symptoms and lack of definitive diagnostic markers, seems to manifest itself differently in different individuals. Why and how gluten affects certain individuals but not others is baffling to researchers and frustrating to clinicians and patients.

For instance, patients with celiac disease have abnormal T-cell responses, which is not always true for gluten-sensitive patients. Studies have shown that some cases of non-celiac gluten intolerance can be identified through gliadin antibodies, which are not always predictive of celiac disease (Collin P et al. J Clin Gastroenterol 2010;44:159-160).

Earlier this year researchers reported results of a study in which they examined the intestinal mucosa of patients with celiac disease and patients with gluten sensitivity (Sapone A et al. Int Arch Allergy Immunol 2010;152:75-80). With marked differences between the groups, the authors concluded that “gluten sensitivity, albeit gluten-induced, is different from celiac disease not only with respect to the genetic makeup and clinical and functional parameters, but also with respect to the nature of the immune response.”

Mounting evidence shows that gluten sensitivity is associated with a higher risk for mortality than in the average population. In a retrospective cohort study of more than 35,000 Swedish patients, researchers found that patients with a spectrum of gluten-related disorders had an increased risk for mortality (Ludvigsson JF et al. JAMA 2009;302:1171-1178). For people with celiac disease, the absolute mortality rate was 10.4 (95% confidence interval [CI], 10.0-10.8) per 1,000 person-years; for those with inflammation but no villous atrophy in duodenal biopsies, 25.9 (95% CI, 25.0-26.8); and for those with latent celiac disease, 6.7 (95% CI, 5.7-7.6). Patients with latent celiac disease were defined by the presence of anti-tissue transglutaminase antibody, antigliadin antibodies or antiendomysial antibodies.

“In the United States, these patients may receive a diagnosis of gluten sensitivity due to the presence of symptoms and antigliadin antibodies but a normal biopsy result,” wrote Dr. Green in an accompanying editorial (Green PH. JAMA 2009;302:1225-1226). These patients “are assumed to be healthy, lacking any disease. However, these patients have an increased mortality.”

A separate study of 13,400 patients in Northern Ireland also showed higher mortality rates among gluten-sensitive individuals. Rates of all-cause mortality, mortality from malignant neoplasms, non-Hodgkin’s lymphoma and digestive system disorders were significantly higher in gluten-sensitive patients compared with the healthy population, although the incidences of lung and breast cancer were significantly lower (Anderson LA et al. World J Gastroenterol 2007;13:146-151).

Studies also have shown that gluten sensitivity is more common among persons with schizophrenia. In 2009, Dr. Fasano and colleagues published a study showing that 23.1% of 1,401 schizophrenics had moderate to high levels of antigliadin antibodies compared with 3.1% of controls (Cascella NG et al. Schizophr Bull 2009 Jun 3 [Epub ahead of print]). Moreover, a variety of studies have noted a drastic reduction, if not full remission, in symptoms of schizophrenia after initiating gluten withdrawal in a subset of schizophrenic patients (Kalaydjian AE et al. Acta Psychiatr Scand 2006;113:82-90). A recent study demonstrated that the immune response to reduced gluten intake in patients with schizophrenia is different from that for celiac disease (Samaroo D et al. Schizophr Res 2010;118:248-255).

More Questions Than Answers

Despite increased research and awareness surrounding gluten-related disorders, questions remain about how best to identify and treat patients.

“We don’t have solid evidence at this point—only putative theories,” said Sheila E. Crowe, MD, professor of internal medicine in the Division of Gastroenterology & Hepatology at the University of Virginia Health System, in Charlottesville. “We know very little about this condition, be it prevalence or anything else. It’s really a nebulous condition and poorly defined, with a grab bag of symptoms.”

Experts are putting the call out to gastroenterologists to educate themselves about the spectrum of gluten-related disorders. They ask specialists to thoroughly work up their patients with suspected gluten sensitivity and/or celiac disease and to perform biopsies and blood tests when appropriate.

“Take it seriously,” said Cheryl Harris, MPH, RD, a dietitian specializing in gluten sensitivity. “I hear a lot of clients say that their gastroenterologists said they can’t see any damage during an endoscopy, so there’s no point in doing a biopsy, but we know this isn’t the case. It’s easy to dismiss these things. But gastroenterologists are really in a great position to diagnose celiac disease, and to do the full battery of tests that will help identify problems.”

Regarding the 2009 JAMA study, Dr. Green wrote: “The study by Ludvigsson and colleagues reinforces the importance of celiac disease as a diagnosis that should be sought by physicians. It also suggests that more attention should be given to the lesser degrees of intestinal inflammation and gluten sensitivity.”

Dr. Fasano summed it all up.

“I think gastroenterologists have gone through three stages: a degree of skepticism about celiac disease being rare, followed by people coming out of the woods believing they have all kinds of forms of gluten-related issues,” he said. “Now, we’re in the third stage, where I think our role as gastroenterologists is to achieve a balance, to find out who is gluten-sensitive, who really does have a problem and why.” 

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