Each time a patient newly diagnosed with Celiac Disease comes to me for counseling on the gluten-free diet, I can see the mental gears turning as his or her new reality sets in. Inevitably, the question arises: "Will I never be able to eat gluten again?"
On the record, I repeat the party line: A strict, gluten-free diet for life is the only treatment to manage Celiac disease. For many patients, this restricted diet is a small price to pay for relief from often-debilitating symptoms that may have plagued them for years before diagnosis. But for others, the prospect of life without a good New York bagel, a flaky croissant, or a slice of pizza from their favorite neighborhood joint is a very tough pill to swallow.
Off the record, I've been following several promising research directions that may someday "soften" the need for a strict gluten-free diet to manage Celiac disease. While none of the research under way offers hope of a cure for the underlying autoimmune dysfunction itself, it all suggests the possibility that people with Celiac disease may one day have the ability to tolerate at least some amount of wheat without having a harmful autoimmune reaction.
Below is a summary of some of the current research efforts:
• The insurance policy pill: A drug called Larazotide Acetate is being evaluated as a possible adjunct therapy to the gluten-free diet for Celiac disease. The drug would work by tightening the junctions between neighboring intestinal cells, which can become loose and permeable in patients with Celiac disease when gluten is present. Gaps in these junctions compromise the intestinal barrier and enable gluten to provoke an immune reaction as it leaks out of the GI tract. Preventing these gaps, in theory, should prevent the immune response when a person with Celiac disease consumes a small amount of gluten—say, from cross-contamination at a restaurant.
In the first phase of the research, people with Celiac disease who took the drug and ate gluten—in a dose roughly equivalent to that in half a slice of bread—for two weeks were not protected against an increase in intestinal permeability compared to those who did not take the drug. However, those who used the drug did experience a more moderate increase of blood markers associated with an immune reaction (called anti-TTG antibodies) and reported GI symptoms that were less severe than those who didn't use the drug.
I'll be keeping a close eye on the second phase of clinical trials currently under way to see if any more promising news emerges, such as improved tolerance of gluten when doses of the medication (or the gluten exposure) vary.
• Enzyme therapy: The race is on to see who will be first to develop a pill that would detoxify dietary gluten into harmless protein fragments in people with Celiac disease. Just as people with lactose intolerance can pop a Lactase enzyme pill to pre-digest the lactose sugar in dairy foods, multiple teams of scientists are likewise aiming to develop an analogous enzyme pill that would pre-digest gluten before it can wreak havoc in the intestines of people with Celiac disease.
Based on initial research results, it remains doubtful that any pill could be effective enough to allow people with Celiac disease to consume gluten freely. Rather, these enzymes seem most promising as a therapeutic corollary to the gluten-free diet to protect people against accidental gluten ingestion.
Perhaps the most promising research effort under way is that of a new drug called ALV003, developed by a California-based pharmaceutical company. The drug—a combination of two gluten-specific peptidases (enzymes that break down protein chains)— is intended to pre-digest gluten into smaller fragments that will not trigger the signature autoimmune reaction seen in Celiac disease. The drug is currently entering into phase 2 clinical trials, meaning it will be tested among a larger number of people than in initial testing. In the initial phase, 20 people with Celiac disease consumed 16 grams of gluten per day for three days (the equivalent of more than three slices of bread).
On a parallel path, a recent study published in the Journal of the American Chemical Society outlined research efforts to develop an enzyme—dubbed KumaMax—that similarly breaks down gluten's long protein chains into smaller protein fragments in the stomach before they travel to the intestines. The first version of that enzyme—tested in a lab, not in people—was able to degrade 95 percent of the gluten to which it was exposed. These results, while exciting in a lab, aren't encouraging enough to warrant you breaking out that hoarded stash of Twinkies anytime soon; even 5 percent of the gluten in your average wheat-based food would be more than sufficient to trigger a reaction in most people with Celiac disease.
• "Detoxified" wheat flour: Researchers out of Italy have been experimenting with using lactic acid bacteria—like those found naturally in sourdough bread starters—to pre-treat wheat flour. They've found that fermenting wheat for extended periods of time—24 hours—with these bacteria has a "proteolytic" effect on the gluten. In other words, the fermentation process helps break down the long gluten proteins into smaller fragments that shouldn't provoke the characteristic autoimmune response seen in Celiac disease.
To test their hypothesis, scientists baked a bread that contained 30 percent of this specially treated wheat flour in combination with a variety of gluten-free flours. They then baked another bread of the same composition, but used wheat flour treated with traditional baker's yeast. They randomly assigned one of two breads to a group of 17 patients with Celiac disease who had been following strict gluten-free diets for more than two years.
Participants ate these breads for two days and also drank beverages containing a combination of sugars whose presence (or absence) in the urine would indicate intestinal integrity and absorption. The research found that participants consuming the lactobacillus-fermented bread showed no signs of change in their intestinal permeability, while 13 of the 17 participants consuming the bread with baker's yeast did show such changes.
To be sure, this is an extremely small study, and it only involved two days of exposure to the bread. But it nonetheless raises the enticing possibility of a novel concept: gluten-free wheat bread?
For those of us with Celiac disease who have been living strictly gluten free for years, the prospect of one day having the option to eat gluten again—even in modest quantities—may be confounding on several levels.
Personally, being gluten-free has prevented me from going crazy with foods I shouldn't be eating. Passing by the pastry counter at Starbucks every day is a cinch knowing that there's nothing safe for me to eat there. Pizza and cupcakes at kiddie birthday parties every weekend? Not for me, thanks. Often, the safest dish for me at a restaurant is a salad—a far lower-calorie option than that big, glutinous bowl of homemade tagliatelle with truffle sauce that I really want.
Gluten-containing foods confront me daily, and I have no choice but to turn them down without so much as a second thought. As a result, my gluten-free diet has facilitated my ability to maintain a reasonably healthy weight.
Then there is the sense of identity and community that gluten-free living confers on so many of us. There are thousands of gluten-free bloggers, chefs, and home-cooking enthusiasts who derive a real sense of identity from our common struggles to create tasty, nutritious foods on the gluten-free diet. The diet tends to become a focal point in one's life, driving decisions about where to dine out or to travel. Just as a vegetarian, vegan, raw food, or kosher diet becomes a prominent feature of one's social identity, so too does the gluten-free diet for people with Celiac disease.
As the saying goes: "You are what you eat." Who will we be when—and (of course) if—we are no longer gluten-free?
So I pose the question to you all, my fellow gluten-free comrades: If you had the opportunity to eat gluten again, would you welcome it?
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Tamara Duker Freuman, MS, RD, CDN, is a NYC-based registered dietitian whose clinical practice specializes in digestive disorders, Celiac Disease, and food intolerances. Her personal blog, www.tamaraduker.com, focuses on healthy eating and gluten-free living.