Something Special to do in February

It's February and you might be thinking of upcoming Valentine's Day or even that this is a leap year.

 

But I wanted to turn your attention for a minute to a Gluten in Medication survey.

The National Foundation for Celiac Awareness  is conducting the survey to see how widespread the problem of gluten in medication really is. There has been a lot of discussion of this issue in the past, but this is the first time anyone has set out to collect real data.

The survey, which is open until February 28,  will take between five and 15 minutes to complete. Results will be used to help the NFCA identify which medications to test for gluten. Funding for this research comes from a grant from the Food and Drug Adminstration. Results will be published late in 2013.

I know from writing about the topic that everyone, including pharmacists, suspects very few drugs contain gluten. But because some medications might, we have to look at all drugs to make sure we're not taking one of them. And it's not easy to find information about gluten in drugs since there are no laws that require it to be labeled. That means cross examining your pharmacist and calling drug manufacturers.

If this survey can help reduce the effort we have to put into finding odd ball drugs with gluten it will benefit everyone who is gluten free. So I am encouraging you to take it  before February ends.

One final note, even as the survey is being conducted, the FDA is also looking into the possibility of prohibiting the use of gluten-containing ingredients in drugs altogether. The agency is asking drug companies whether this simple solution would work, given that gluten in used so rarely anyway.

It's nice to see two efforts to simplify gluten-free life in relationship to medications going on at the same time. That gives us two chances to resolve the issue of gluten in drugs -- either through an outright ban or clear labeling.


Amy Ratner

Gluten Sensitivity Gets Legitimate



Alessio Fasano



Not that long ago, many people who had celiac disease could not find a  doctor who knew what was what was wrong with them.

Their symptoms might have been lumped into a catch-all category of irritable bowel syndrome, or they might even have been told it was all in their head. Then came growing awareness and a consequent increased interest in research and better testing methods. Ever so slowly but surely it became easier to get diagnosed and return to good health through a gluten-free diet.

Now, it seems, the same process is beginning for those who are gluten sensitive.

Like celiac disease patients before them, people who have gluten sensitivity have long been frustrated by the fact that doctors can not pinpoint what is wrong. Their tests for celiac disease are usually negative, and they are often advised not to follow the gluten-free diet even though it relieves their celiac-like symptoms.

New research from the University of Maryland may mark the beginning of the end of that scenario.

 In a study published online at BMC Medicine, scientists from the Center for Celiac Research found that gluten sensitivity is a bona fide condition, distinct from celiac disease, with its own intestinal response to gluten.

"The research provides the first scientific evidence of a different mechanism leading to gluten sensitivity," the celiac center said in a press release. "It also demonstrates that gluten sensitivity and celiac disease are part of a spectrum of gluten-related disorders."

Alessio Fasano, MD, the lead investigator of the study and the director of the celiac center said one end of the spectrum is made up of people with celiac disease who can't tolerate even a crumb of gluten, while at the other end gluten causes no problems.

"In the middle, there is this murky area of gluten reactions," he said. "This is where we are looking for answers about how to diagnose and treat this recently identified group of gluten-sensitive individuals."

The study included 26 gluten sensitive and 42 celiac disease patients, plus 39 control subjects. Although gluten sensitive patients have the diarrhea, abdominal pain and other symptoms suffered by those with celiac disease, they do not have the  damage to the absorbing lining of the small intestine that characterizes the auto-immune disorder.

After a four month gluten-challenge followed by a return to the gluten-free diet, symptoms in all the gluten sensitive participants resolved in a few days and did not return for a follow-up period of four years.

Researchers found differences between celiac disease and gluten sensitivity in intestinal permeability and genes regulating the immune response in the gut.(Intestinal permeability is the ability of the mucosal layer of the digestive tract to prevent bacteria, antigens, and undigested food proteins from seeping through the gastro-intestinal  barrier. Those who have celiac disease often have a high degree of permeability, sometimes called a leaky gut, but the study found that was not the case in those who are gluten sensitive.)

 The study documents, for the first time, the genes and sequence of reactions in the small intestine possibly associated with gluten sensitivity, Fasano said. Results of the study could lead to all-important tests that could  diagnose gluten sensitivity.

About six percent of the US population, or about 18 million people, have gluten sensitivity, according to the celiac center, compared to 1 percent who have celiac disease.

While results of the study are new, Fasano's conviction that gluten sensitivity is a legitimate condition has come up before. In an interview in Gluten-Free Living late last year (Number 4/2010), he said gluten sensitivity had always been disregarded by the medical and scientific communities. And he noted the desperation of those who suffered from its very real symptoms. "There is definitely a group..who are really and truly sensitive to gluten and when you remove gluten they don't have symptoms," Fasano said.

He alluded to the new study when he said the celiac center had some papers coming out that would start to give clues to some possible markers that could be looked at to make a diagnosis of gluten sensitivity.

Now one of those papers is here. In the gluten-sensitive community you could feel the satisfaction that came with acknowledgement that the conditions is, in fact, real. (No one could blame them for wanting to say "I told you so.")

Now let's hope the diagnostic tests aren't too far behind.

Amy Ratner

Celiac Disease Research - What it means to you

Keeping up with news about research into celiac disease, gluten-intolerance, the gluten-free diet and related topics can keep you very busy.

And sometimes when you read about new studies it can still be difficult to figure out exactly what they will mean in your gluten-free life. Is a promising treatment likely to move from the lab to real life in five years or ten? Can a new way of diagnosing celiac disease or gluten intolerance get you a definitive answer after years of uncertainty? What about studies into safe levels of gluten in your food? Are there links between celiac disease and other medical conditions?

In upcoming issues of Gluten-Free Living we'll give you important information about research and how to interpret it. More about that in a minute.

 First we wanted to let you know about a new study from the University of Chicago, where researchers have been able to create and then cure celiac disease in mice by manipulating an inflammatory protein commonly found in the gut of humans who have the disease.

In a study published in the journal Nature, mice who were genetically  susceptible to celiac disease were given an increased amount of interleukin 15 causing them to develop symptoms of the disease. But when the IL-15 was blocked, the mice reverted to normal and could tolerate gluten again.

Interestingly, when the mice were given retinoic acid, a derivative of
Vitamin A thought to reduce inflammation in the intestine, they got worse instead of better.

So what does all this mean to those who have celiac disease?

The hope is that results will eventually help treat and possibly prevent development of celiac disease in those who are most at risk. The study identifies IL-15 as one, perhaps critical, way people lose tolerance to gluten and could lead to ways to block it, said Bana Jabri, MD, PhD, one of the study's authors and an associate professor who works with the University of Chicago's Celiac Disease Center.

In fact, clinical trials of medications that block IL-15 are already under way for patients with rheumatoid arthritis, another inflammatory disorder. Early results have been encouraging.

The study also raises questions about the use of retinoic acid, which is found in acne treatments such as Retin-A and Accutane, by those who have celiac disease. The retinoids seem to act with the IL-15 to promote inflammation in the intestine.

This study is just one of many related to celiac disease currently underway. To help readers of Gluten-Free Living understand what some of these studies mean, we are launching a new research column in our upcoming issue. The column is written by Jason Clevenger, PhD, a scientist with the consulting firm Exponent, Inc. He is the former editor of the Healthy Villi Newsletter published by the Boston celiac disease support group. Jason became interested in celiac disease when he met his wife Charmaine, who had been diagnosed while she was in college. His column will include a summary of each study in language you can understand even if you don't have a medical degree. And it will tell you why it's important to you.

Nearly seven years ago, when the National Institutes of Health held the first consensus conference on celiac disease and helped usher it into a new era of understanding, the point was made that not enough scientists were interested in studying the disease.  That, like many other things related to the gluten-free lifestyle, has changed.

We've designed our new research column to help you make sense out of the growing scientific interest in celiac disease, gluten intolerance and the gluten-free diet. Look for it in our new issue, due out in early March.

Amy Ratner

You are never too old to get celiac disease, study shows

The number of people in the US who have celiac disease has been doubling every 15 years, with most of the increase found among the elderly, according to a new study released today.

Researchers at the University of Maryland's Center for Celiac Research looked at blood tests of 3,511 people and found that one in 501 were positive for celiac disease in 1974, increasing to one in 219 in 1989. As people in the study aged, the incidence of celiac disease rose, according to  results published in the online version of The Annals of Medicine. The CFCR's landmark study into the prevelance of celiac disease in 2003 put the number at one in 133.

Carlo Catassi, MD, lead author and co-director of the CFCR, said you are not necessarily born with celiac disease and urged physicians to screen their elderly patients. The new research echoes the results of a 2008 Finnish study that found the prevalence of celiac disease in the elderly is nearly two and a half times higher than in the general population.

"You are never too old to develop celiac disease," said Alessio Fasano, MD, director of the CFCR.

Fasano said the study shows that environmental factors cause a person to stop being able to tolerate gluten at some point in their lifetime. If individuals can tolerate gluten for many decades before developing celiac disease, something other than gluten must be in play, Fasano said.

If those factors could be identified and manipulated, new treatments and prevention of celiac disease would be possible, he said.  Researchers have already identified specific genetic markers for the development of celiac disease, but these markers do not guarantee that an individual will eventually get it. How and why someone loses tolerance to gluten remains a mystery.

The increase in celiac diagnosis in the elderly also calls into question the assumption that celiac disease usually develops in childhood.

The study was based on blood samples from more than 3,500 adults who were followed over time. The Universita Politecnica delle Marche in Ancona, Italy, the Johns Hopkins Bloomberg School of Public Health, the Women & Children's Hospital of Buffalo and Quest Diagnostics also participated.