Back and forth on Gluten Sensitivity

February has been a push-me, pull-me month for those with gluten sensitivity.

First a group of 15 international celiac disease experts gave gluten sensitivity its own category in a list of gluten-related disorders. The researchers, writing in the journal BMC Medicine, also proposed a specific way to diagnose gluten sensitivity. Both were seen as positives for people who get sick when they eat gluten, but don't have celiac disease.

According to the experts, gluten-sensitivity should only be diagnosed after first ruling out wheat allergies, celiac disease and gluten ataxia, using blood and other tests that can pinpoint those recognized disorders. Second, diagnosis should include testing for AGA antibodies in the blood, though these are not always present. Third there should be improvement in symptoms on a gluten-free diet. Finally, a double-placebo gluten challenge in which neither the patient nor doctor knows when gluten-containing foods are being consumed should be conducted.

“Some individuals who experience distress when eating gluten containing products and show improvement when following a gluten-free diet may have gluten sensitivity instead of celiac disease,” concluded researchers including Alessio Fasano, MD, of the University of Maryland Center for Celiac Research and Peter Green, MD, of the Celiac Center at Columbia University.

But even as word of the proposed diagnostic system for gluten disorders was spreading, two Italian researchers wrote an essay in the Annals of Medicine that called into question the increasing number of gluten sensitive patients.  This was the not-so-good news.

“Considerable debate about non-celiac gluten sensitivity has recently surfaced on the Internet, with a sharp increase in forums, patients or patient groups, manufacturers and physicians advocating a gluten-free diet, the essay said. “ Claims seem to increase daily, with no adequate scientific support to back them up.”

Discussion about the existence and extent of gluten sensitivity continues despite growing medical acceptance because there is still no test to specifically detect the condition. Gino Roberto Corazza, MD, a gasteroenterologist and professor of internal medicine at the University of Pavia in Italy, cautioned against making a diagnosis based on patient reports alone because the symptoms, which are often similar to those of celiac disease, are so non-specific.

“We know almost nothing about gluten sensitivity except what patients say they believe about it,” Corazza and Antonia Di Sabatino, MD, wrote.

In an online interview with the Annals of Medicine, Corazza  said food intolerances are often a “mere consequence” of a placebo effect. “If a patient believes a food is offensive to him, he will develop symptoms,” Corazza explained. He said doctors have to be able to distinguish between “real and unreal patients in an objective way.”

Corazza said the distinction can be made only by using double blind tests to determine who really has gluten sensitivity. And he predicts that many people tested will not be able to distinguish, via symptoms, when they have eaten a food with gluten. “The placebo effect of the elimination diet is very strong,” he said.

It took a long time for those who are gluten sensitive or intolerant to get any validation from the medical community. Corazza’s comments sound a lot like the reaction those patients got from their doctors for many years. Once celiac disease was ruled out, patients were told a gluten-free diet was unlikely to help and left on their own to figure out what to do next. Frustrated and sometimes desperate, they went gluten-free anyway and reported that their symptoms disappeared.

Then about a year ago, 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.

They studied 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 documented, for the first time, the genes and sequence of reactions in the small intestine possibly associated with gluten sensitivity, Fasano said. Though specific tests have not yet been developed, the hope is that results of the study could eventually lead to one 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.

Despite skepticism about the extent of gluten sensitivity, Corazza said he thinks it is a real condition that can be diagnosed as long as the double blind challenge is part of the process. And he called for additional studies to improve understanding of the condition eventually leading to better testing.

That’s where he finds common ground with other experts who acknowledge that there is still a lot we don’t know about gluten sensitivity.


Amy Ratner

Bought Vinegar, Not Pastries!

What are you supposed to do when the temperature reaches the high 60's in February? Get outside to enjoy the sunshine! This is vacation week for many schools in the north east and my sons and husband are enjoying sun and surf in Florida. My daughter and I stuck around due to basketball, but the season ended and we have been enjoying a quiet week.

On a whim, we decided to go into New York City and check out Chelsea Market and The High Line Park. Both are equally interesting. The Chelsea Market is home to a lot of bakeries, a market, a few stores and some pretty amazing food.

We picked up some Thai food for a late lunch and my daughter said she would go back for a cannoli after we finished. Eating outside in February, in New York City, is practically unheard of but we went up to the high line benches and joined many others who were relishing the great weather and the good food from various eateries in Chelsea Market.

I think weather anomalies are a reason for celebration when you live in a region of the country with true seasons. A day as beautiful as yesterday is a gift and there were many New Yorkers and visitors who were taking full advantage of the warm, breezy temperatures.

My daughter went back inside for chocolate dipped cannoli filled with cream. Even though I did not see any gluten-free pastries in those bakeries, I purchased pomegranate vinegar, balsamic vinegar and some merlot salt from The Filling Station. I am so excited to drizzle those vinegars over a salad or to make a reduction for a nice chicken dish! If I had wanted something sweet there were places within walking distance that have gluten-free baked goods.

I celebrated a gorgeous day and spent some precious time with my daughter who is happy to poke around in stores and wander through the city.

Today, it’s rainy and cold and I have had a very productive day at the computer…but I have my NYC “tan” along with the inner glow of a few stolen hours of time off.

Kendall Egan

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-Free Pigs in a Blanket

Is there anything better? I try to limit my hot dog intake to the summer months, but come this Superbowl Sunday, I will be dunking my gluten-free pigs in a blanket into lots of hot mustard while I cheer loudly for the NY Giants.

I have asked a few gluten-free moms that I know how each would make gluten-free piggy’s, most said they make a corn bread batter so that their pigs come out more like corn dogs. I cheat. I really like them better with a pie crust blanket.

I use the frozen gluten-free pie crusts from Whole Foods Gluten-Free Bakehouse and re-purpose the crusts! It is so easy and those pie crusts are terrific for quiche, pies and now pigs in a blanket! I dump the thawed crust onto a piece of wax paper and flatten out the edges. Then, I cover the crust with another piece of wax paper and gently roll the crust back together again.

With a pizza cutter, I make triangles for my mini hot dogs. Then I just roll up the mini hot dogs and wait for game time. They aren’t pretty, sometimes you have to patch the crust together.

Bake at 350 degrees until crust is golden. My oven is on the fritz, I have to preheat it at 425 for twenty minutes to get it up to 350 degrees…so it is difficult for me to give an estimate on how long they should bake.

I plan to make mine on Saturday! My celiac is going to a Superbowl party, so I intend to send him with a cookie sheet of these so the mom can throw them in the oven for everyone…no one will ever know they are gluten-free.

Kendall Egan