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I was wondering if anyone is familiar with genetic test results. I was tested through Prometheus over a year ago due to many celiac symptoms. My test came back positive DQ2.2 and DQ2.5, putting me in their "very high" risk category. Because of these results, my doctor also ordered a genetics screening for my daughter, 10 at the time. Her results ended up being processed through Quest instead and had a very different type of report. It showed the following: HLA-DQ2 Negative HLA-DQ8 Negative HLA-DQA1* 02 HLA-DQA1* 02 HLA-DQB1* 0202 HLA-DQB1* 0202 According to the notations on the test results, she "did not have the HLA-DQ variants associated with celiac disease." I left it at that thinking she could not develop celiac. Fast forward a year and she began developing symptoms - stomach aches that became more and more frequent and reflux after meals with throat clearing and coughing. I looked at these results again, and this is when I noticed the variations that showed positive. I wish I understood genetics more, but I did some research and discovered that these haplotypes form the DQ2.2 gene. Is this correct? If so, I've read studies indicating that being homozygous for DQ2.2 puts you at a moderate risk for celiac - not "no risk." I've also ran her raw DNA through several sites which show she carries genes that put her at risk for celiac. I'm trying to piece all of this together. Am I missing something here? It should be noted that I've since had to go gluten-free, and my husband later did. We've both had dramatic health improvements since. We are seeing her functional MD for this, and also have an appointment with a pediatric GI. Her one doctor reordered tests for both genetics and antibodies and told me I could go through Prometheus with it. It's my understanding that Prometheus offers a more comprehensive genetics screening.
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Celiac.com 11/19/2008 - Day Four: After a ride on a local public bus, which hugged the narrow road's teetering edge and rounded hairpin curves with an alarming sense of speed, we felt grateful for the solid earth beneath our feet in Positano. Our first order of business was to check into the Hotel Villa Rosa and find a nearby trattoria to fill our grumbling stomachs! One of the staff, Stefania, recommended Caffè Positano on the Fornillo side of the town and arranged for a courtesy taxi to deposit us at its doorstep. Without a doubt, its chief allure was the alfresco terrace facing the sea. Situated across the road from the main restaurant and kitchen, the terrace held a dozen or so umbrella-topped tables and beckoned foreigners with unforgettable views. Jill: We decided to share an enormous plate of salty prosciutto and cold sweet melon as an appetizer. Jeff ordered pesce spada griglia (grilled swordfish) and I chose petto di pollo aceto (grilled chicken with a balsamic vinaigrette, parmesan and arugula). We nibbled at each other's dishes and savored every bite of that culinary welcoming, so much so that we'd find ourselves back for more during our stay. Days later, upon seeing zuppa di verdura (minestrone soup) on the menu, Jeff asked how it was prepared. Our server confirmed it did not contain any noodles/macaroni or gluten, and Jeff was pleased to have his fill of the strictly vegetable-based soup, which we learned is how minestrone is typically prepared in the region. Experimental cook that he is, Jeff was eager already to replicate the recipe when we returned home to San Francisco. Jeff: The Villa Rosa provided an ample gluten-free breakfast. Each morning my tray included a gluten-free chocolate croissant and gluten-free toast with butter and jam, along with our usual assortment of coffee, tea and yogurt. After we finished a late breakfast, lounging at the beach was one of our favorite things to do. Like many beach areas, lunch fare leaned toward sandwiches, pizzas and the like. The few restaurants tended to be overpriced, but we found a reliable alternative in the salumeria, the Italian version of the delicatessen which means "cured meat shop." It had a variety of cheeses, meats and salads priced by the kilo. In addition to fresh pasta and pasta salads, the place usually had salads that were pasta-free and gluten-free. Also, once I discovered that French fries were readily accessible (yes, in Italy) and the minestrone was, in my experience, always gluten-free, I knew I had a reliable fallback. This reinforced my confidence and led us to make an exception of avoiding sit-down lunches near the beach. We tried La Cambusa, where the waiter called us by our city of origin: Mr. and Mrs. San Francisco. I had my staple fallback meal, and Jill snacked on a tasty ham and cheese omelet that she washed down with a glass of prosecco. Jill: While most of our experiences were positive, we had a few missteps along the way. During our first evening at a beach snack shop, Jeff ordered saltimbocca, a dish generally prepared with rolled veal, prosciutto or ham and cooked in a wine and butter sauce. However, what he ended up with was a sandwich version, pressed between thick slabs of bread, that I stuck in our fridge for my lunch the following day. Another time for dinner, we visited Donna Rosa, a family-run trattoria perched high in the hills of nearby Montepertuso, where the locals know to go to eat well and on the cheap. For an appetizer we chose scallops which, to our consternation, were lightly dusted with a bread-crumb gratin that wasn't described on the menu. These surprises could have been averted, though, if we hadn't let down our guard and relied too heavily on the menu. Ultimately, these experiences nudged us to remember to ask questions upfront and not get too comfortable. Day Nine: When we arrived in the more isolated fishing village of Praiano, a veritable country cousin to cosmopolite Positano, Jeff plopped down in the pastel-hued restaurant of the Hotel Margherita mere minutes after dropping his bags. He was famished and awaited a sumptuous plate of spaghetti posillipo, made with the hotel's gluten-free spaghetti and mushrooms. In fact, Jeff was so enamored with the heaping dish of gluten-free goodness that he borrowed my digital camera to snap a photo and in a flurry of excitement accidentally erased all of our other pictures! Well, at least we've got the memories... The Hotel Margherita proprietor Suela and her husband Andrea were also attentive to Jeff's breakfast needs. In addition to the standard buffet that had a generous gluten-free assortment of eggs, deli meat, cheeses, yogurt, coffee and tea, they purchased extras for Jeff, including a sweet, gluten-free lemon muffin and gluten-free toast. Jeff: On the Vettica side of Praiano, the Trattoria San Gennaro was a brisk fifteen-minute walk from the hotel and sat above the main piazza and church. The view from the terrace was both panoramic and quaint, with the Mediterranean offsetting glittering Positano at night and the piazza coming alive with families sitting about while their children played soccer. The place had been recommended by a kind gentleman named Nicola who works at the Villa Rosa in Positano and lives in Praiano. The restaurant served the best bowl of gluten-free minestrone yet! It was so big I have described it as a “tankard” of soup, loaded with fresh vegetables. Though, you do need to ask the kitchen to hold off on the freshly toasted bread garnish. I’ve rarely been so completely well- fed as when I ordered the fries, minestrone and local fish specialty for dinner on our first night. We lingered well into the night, sipping the local wine and taking in the smell of the sea. Day Twelve: Perched on the cliffs, Ravello is often heralded for its gardens, Villa Rufulo and Villa Cimbrone, and has played host to departing Crusaders, famous authors and numerous other visitors throughout history. The town's stone walls, quaint walkways and tight, cobblestone streets exude the charm of antiquity. Gluten-free dining proved to be equally simple here. We arrived at the Hotel Graal early afternoon and were starving after two long cramped bus rides from Praiano. We headed to the restaurant, where the maître d' guided us to a shaded table on the terrace. Soon we lunched on gluten-free mushroom penne pasta and salad and took in stunning views of the ocean and the nearby seaside village of Minori. Jill: Perusing our guidebook, we found a trattoria tucked away beyond the main piazza called Cumpa' Cosimo and decided to give it a try for dinner. Thankfully we'd made a reservation, as the medieval-inspired place that was dotted with pictures of celebrities and run by Italian nonna (grandmother) Netta Bottone filled up fast. Everything on the menu looked enticing. The roasted rabbit caught Jeff's eye, along with more minestrone soup. He couldn't seem to get enough of the stuff! Craving comfort food, I bypassed the local specialties for a four-cheese pizza and glass of beer. After trying a bit of Jeff's entrée, though, I had a serious case of rabbit envy! We were pushing our last-bite limits when Netta paraded over to our table with a complimentary dessert, something like a cross between cheesecake and tiramisù, which Jeff picked at in order to avoid the crust (Celiac.com does not recommend doing this), and I couldn't resist polishing off. When Jeff mentioned that he was a writer as we paid our tab, Netta darted back to the kitchen and returned with a plate of figs and grapes. From her garden, she said, and insisted we put them in our pockets for later. Day Fourteen: Rome may be the Eternal City, but we had all of a day and a half there to explore, with the half starting after our nine-hour transit by private car, Amtrak train and then a female Formula One taxi driver at Termini Station. Since the next day was Sunday and we had no desire to fight the faithful who would attend mass, we opted for a quick visit to St. Peter's and from there trotted over to the Trastevere district for dinner. The Trastevere, a bohemian counterpart to New York's East Village, is one of my favorite places and it won over Jill, who hadn't quite been captured by the Roman magic. Even in August when the area was thick with tourists, street vendors and buskers, it seemed like a breath of fresh air in a city that can be every bit as overbearing as New York or London. We eyeballed a few menus and sniffed out a crowded place that seemed to move food at a good clip. It was elbow-to-elbow seating at our cramped alleyway table, with throngs of tourists shuffling past, but soon we dined under a blue Roman sky at dusk. We enjoyed a flavorful gluten-free meal of fresh salads, veal marsala, mushroom risotto and handmade local sausages. Despite being stuffed already, we couldn't resist some stracciatella (chocolate chip) and nocciola (hazelnut) gelato near the Piazza Santa Maria, where a polished quartet of young classical musicians serenaded the crowd. In general, we noticed an abundance of gluten-free salads, soups, roasted meats and risottos in Rome and in all four towns we passed through along the Amalfi Coast. We found reliable delis and easy access to fresh fruit. When we asked, places that did not have gluten-free pasta showed a willingness to prepare any that you provided. So, with a quick trip to the local pharmacy for some gluten-free pasta, you could dine with confidence! Contrary to our fears before the trip, eating gluten-free while traveling in Italy proved easy to do. With a bit of planning, a call to the airline to line up a gluten-free meal, an Italian/English explanation of your dietary needs and the standard caution nearly all people with gluten intolerance bring to eating out, anyone can look forward to an enjoyable, gluten-free holiday in Italy. Co-written by Jefferson Adams
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Celiac.com 08/07/2008 - We'd begun practicing basic Italian⎯buon giorno! We'd practically memorized the Frommer's travel guide. We'd scoured multitudes of online travel sites and finally made all the arrangements for our once-in-a-lifetime romantic getaway to the sun-kissed shores of the Amalfi Coast. As the date of our departure approached, we grew more excited to spend our first major vacation together, tucked away in cliffside hotels, taking in sweeping views of the Mediterranean from our seaside balconies. We had some lingering doubts, though. Jeff follows a gluten-free diet, and I was concerned about how well he'd be able to eat in Italy, the land of pizza, pasta and bread. I know how difficult it can be to dine out, even in our neighborhood in San Francisco. What could he possibly find that would be gluten-free in Italy? And, with the language barrier, how would we be able to easily communicate his needs? Jeff: I know a little Italian, but solo un po’ (only a little), as the Italians say. So I, too, was a bit worried. At home, I keep tight control over what I buy, prepare most of my own meals and eat out only at select places that I know are safe. I was worried that consuming every meal at a hotel or restaurant for two weeks straight would present challenges. Like so many people with celiac disease, I've lost more than a few days to gluten contamination. That's the last thing I wanted to happen on such a special trip. One of the first things we did was to e-mail the hotels several weeks in advance to see what gluten-free options they might offer. We crafted a short inquiry in English, and just in case the staff only spoke Italian, put it through a free online translation service called Babel Fish. We included both versions in our messages. All four hotels responded within a day or two, most in English. Three confirmed gluten-free options in the hotel and/or its restaurant. One pledged a solution upon arrival, suggesting that Jeff could communicate a preference for breakfast, and the hotel would meet his needs. Jill: I was especially impressed with Casa Astarita, a bed and breakfast along the first leg of our trip in Sorrento. The staff at Casa Astarita noted that we could request food without wheat or barley, recommended a restaurant in the square and pledged to help us during our stay in Sorrento. In addition, the Hotel Margherita in Praiano, a charming seaside town off the beaten path, assured us of gluten-free pasta and biscuits (probably what we would call crackers) in the hotel. Another step we took about two weeks before our flight was to contact the airline about gluten-free meal options. We wondered if Jeff would be able to eat gluten-free on both legs of the trip⎯from San Francisco to Chicago, and more importantly, the nine-hour haul from Chicago to Rome. Either way, we planned to pack plenty of gluten-free snacks to have on hand as a precautionary measure. Jill: The American Airlines customer service representative told me the airline did not offer gluten-free meals on the short flight from Chicago to San Francisco, and we'd need to bring our own food. However, on the longer flight from Chicago to Rome, they could accommodate gluten-free needs. The representative confirmed a special meals code for the gluten-free food request (GFML is the code) that was entered into the reservation. American Airlines also pointed us to its Web site, which lists sample menu options that may vary month to month: Brunch/hot breakfast - Mushroom cheddar omelet with sweet potato hash, yogurt, seasonal fruit Cold breakfast - Yogurt, seasonal fruit, breakfast cookie Lunch/dinner - Sweet chili salmon, green beans, white rice, salad, fresh fruit Snack - Penne pasta with artichokes, fresh fruit The quick and positive responses from the hotels and airline immediately put us at ease. A little online research into gluten-free travel in Italy promised a smooth experience.Jeff: It turns out that the Italians are actually at the forefront of celiac disease awareness and treatment. In fact, all Italians are screened for celiac disease before they are six years old. [1,2] Those with celiac disease receive excellent support, including monthly payments from the government for gluten-free food, as well as more vacation to offset extra time used to shop for and prepare gluten-free food. Italians are also on the vanguard of the gluten-free food movement. The country's robust celiac association, called the Associazione Italiana Celiachia (AIC), the Italian government and several large Italian companies that make and distribute gluten-free foods have joined together to promote awareness and understanding of celiac disease. This makes for knowledgeable restaurant owners, managers, chefs and waiters. [3] Italians are among the most expert crafters of gluten-free pastas and baked goods. Italian companies like Beretta and BioLand make delicious gluten-free rice pasta and a variety of other gluten-free food products, while others produce numerous gluten-free specialty items for import, such as chestnut flour. AIC has a helpful Web site and convenient 24/7 telephone hotline. Both offer celiac information and support in English and Italian, along with tips on gluten-free food and dining in every region of Italy. [4] So, all of the useful information we turned up in our search made us hopeful that our first vacation together just might be a gluten-free gastronomic delight. Tune in next month to find out how things turned out on the ground. Until then, happy gluten-free travels and, as the Italians say, Mangia bene! Eat well! http://healthlink.mcw.edu/article/1009402816.html http://celiac-disease.emedtv.com/celiac-disease/ celiac-disease-screening.html http://www.prlog.org/10063446-at-last-the-gluten-free-guide-to-italy-guide-to-the-gluten-free-land-of-pasta.html http://www.celiachia.it/default.asp Co-written by Jefferson Adams
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Celiac.com 05/04/2011 - Agriculture officials in Colorado looking to increase millet sales are turning to beer-brewers for help. At present, millet makes up just a fraction of the cereal grains sold in the U.S. Each year, America produces just $50 million worth of millet, compared to several billion dollars worth of wheat, according to the U.S. Department of Agriculture. Millet represents an opportunity to increase revenue for rural Colorado businesses, according to Timothy Larsen, senior international marketing specialist for the state agriculture department. He adds that agriculture needs to nurture numerous niche markets in order to expand. Colorado produces about 60 percent of all millet produced in the U.S. production, about 200,000 acres of millet. The millet can be rotated with wheat, which grows on about 2 million acres. Commonly used as birdseed, Colorado agriculture officials have been promoting millet's gluten-free qualities, and working with Colorado State University to develop recipes using millet. Hoping to create an entirely new business sector officials are asking the Colorado Malting Co. to ship malted samples to Colorado-based brewers so they can experiment with millet-based beers. The company is currently preparing about 6,000 pounds of millet from the Fort Morgan area — 2,000 pounds each of three varieties — for commercial brewers this spring. The company recently finished malting golden German millet, which, according to co-owner Jason Cody, yielded some impressive nutty flavors. Pedro Gonzalez, co-founder of gluten-free beer company New Planet Beer, said he's eager to see if the brewers his company works with can find a recipe that appeals to customers the way some millet-based imports do. New Planet's existing beers primarily use sorghum, corn and brown rice, along with ingredients such as raspberry puree and molasses to add flavor. Because people's taste-buds are geared toward malted barley, and the gluten, and the proteins that make beer thick and full-bodied, working without barley can be a challenge. "When you choose not to have barley or wheat in your beer, then you lose those qualities, says Gonzalez." Being able to use Colorado-grown millet will help New Planet meet its company mission of being environmentally responsible by using ingredients that don't have to be shipped far, Gonzalez said. Among the establishments scheduled to participate in the millet-beer experiment are Eddyline Restaurant and Brewing Co., in Buena Vista, Pagosa Brewing Co. in Pagosa Springs. Eddyline head brewer Scott Kimball won't promise his customers a millet beer until he knows how it tastes. Pagosa Springs head brewer Tony Simmons says malted millet presents "an opportunity where if we have a gluten-free beer that actually tastes good, let's try it," adding that he's done some home-brewing with millet, and that he's "a big fan." The project is being made possible in part by a $42,000 USDA grant to help Colorado's millet industry market itself, domestically and overseas. Source: http://www.greenfieldreporter.com/view/story/c03f9954de0b4eaf8514c5eeb1dba418/CO--Colorado-Millet-Beer/
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Celiac.com 09/11/2008 - After a two-leg flight and multiple trains, Jeff and I finally stepped off the local Circumvesuviana train in sunny Sorrento, our first destination on the fabled Amalfi Coast. It was hot, or as the Italians say, molto caldo. We’d been traveling for nearly 24 hours straight, and as we lugged our bags along the final stretch of cobbled sidewalks toward Casa Astarita, we both felt exhausted, ravenous and more than a bit disoriented. Jill: Any nourishment from our 10-hour flight from Chicago to Rome had long since faded. However, American Airlines had made good on its promise to provide Jeff with decent gluten-free meals. The attendant had confirmed his special meal selection at the beginning of the flight, and at both dinner and breakfast he was among the first to be served (much to the envy of the other hungry passengers!). Jeff: For dinner American served me a gluten-free meal of blackened chicken on a bed of quinoa, with green beans, melon and a gluten-free German chocolate cookie. Now, airline food is never going to win any Michelin stars, but I was grateful that my meal was gluten-free, hot and reasonably palatable. As we checked into Casa Astarita, the helpful receptionist Marella suggested that we try Bar Syrenuse, a nearby ristorante with gluten-free menu options. Marella even gave us a referral card good for a 10 percent discount. After freshening up, we sauntered a couple blocks to the Piazza Tasso, the main square, where we easily found the cheerful and airy establishment. Jill: Bar Syrenuse offered a separate gluten-free menu selection. Many of the items, such as the meats and salads, were regular staples on the menu. Jeff had many options to choose from – including gluten-free pasta. I opted for a club sandwich, stuffed with local ham and cheese, and a caffe alla nocciola (hazelnut coffee). Jeff: The intense heat of the day was just beginning to break, and I wasn’t in a pasta mood at that moment, so I ordered pollo al forno (grilled chicken with balsamic vinegar, parsley and chili flakes) and an insalata verde (green salad). The food was delicious, and sitting on the terrace made for a lovely introduction to Italy. All this for two for under 25 euros. Perfecto! Day Two: Our stay at Casa Astarita included breakfast, and we’d been assured via email of gluten-free options. The staff did not disappoint and even offered to prepare an omelet if Jeff wished. He ultimately chose from the standard offerings of orange/pineapple yogurt, fresh juices, individually brewed coffee, cheese and corn flakes (which for some might best be avoided) before we began our morning walk. Jill: During our meanderings through the town and along the cliffs overlooking the spectacular Bay of Naples, we checked out a few potential lunch spots and perused their menus. We decided on a simple outdoor restaurant, Angelina Lauro, near that train station that offered shaded tables and faced a grassy piazza bearing the same name. Jeff had a vegetable and cheese omelet along with fries, which would frequently become his reliable substitute for bread. I had a scrumptious margherita pizza. It was so big that I was able to save half for lunch the next day. Jeff: After a short nap followed by another evening walk along the Marina Grande, we again headed for Bar Syrenuse – this time, with gluten-free pasta in mind! We decided to share a few dishes and ordered gluten-free penne pasta with tiny tomatoes, grilled seasonal vegetables and an insalata caprese. The pasta was nicely cooked, with a flavorful sauce. Jill commented it tasted so good she’d have never known it was gluten-free. It was then I realized just how good it felt to be in Italy, sitting outside and eating pasta, an almost forgotten favorite, as the sun went down. The manager of Bar Syrenuse is a personable gentleman named Toni. We were able to pull him aside during a pause in his busy dinner rush and ask a few questions about how the restaurant came to offer gluten-free options. Toni explained that there are so many special diets that it is important to offer many choices to attract the fullest clientele, and noted that a wide range of food options is a reflection of good service, which is good for business. Consequently, Bar Syrenuse offers numerous items that cater to a number of specialty diets. Day Three: After a torrid afternoon spent traipsing through the ruins at Pompeii, where we’d consumed just a few snacks – gelato, granita and coconut snack bars – we were ready for a proper meal. The day before, we’d spotted several quaint restaurants tucked away in the alleys near our hotel, and so we headed in that direction. We nestled in at Ristorante Sorrento, a charming establishment with a large awning and phalanx of outdoor tables adorned in crisp white tablecloths. Jeff started with minestrone soup, followed by a main course of fresh local white fish with tomatoes in a white wine sauce and a green salad. I choose lemon risotto with shrimp and an order of pane (bread). Jeff got a little extra protein that night as I quickly passed over the jumbo shrimp to his plate. Their heads, with those little black eyes staring back at me, were more than I could take! During our stroll back to the hotel, we stopped to purchase a few postcards and sip some cappuccino before settling in for a good night’s rest, before moving on to what would be the absolute gem of our trip, picture-perfect Positano. Check back for our next article featuring our gluten-free gastronomical adventures in this serene oasis by the sea!
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Celiac.com 09/30/2002 - As reported in the September 27, 2002 issue of Science, Dr. Chaitan Khosla, professor of chemistry and chemical engineering at Stanford University, and colleagues have identified the specific protein fragment that causes intestinal damage when people with celiac disease eat grains such as wheat, rye, and barley. Graduate student Lu Shan from the Stanford team was able to identify the specific protein fragment in gluten that triggers the damaging attack by T-cells in individuals with the disease. The key fragment is made up of 33 amino acids that are normally broken down in the digestive systems of healthy individuals, but not in those with celiac disease. In addition to this discovery, the Stanford team is also beginning their search for a celiac disease cure. To that end they have developed an enzyme treatment that renders the newly discovered harmful amino acid sequence in gluten harmless in the guts of test animals, and hope that it will do the same in humans. Several more years of research must be done in order to determine if it will be effective in humans. Dr. Khosla warns against undue optimism regarding the preliminary results of their new enzyme therapy, and stresses that it is too early to raise the hopes of those with celiac disease. To fund the teams future research efforts Dr. Khosla and colleagues have established the Celiac Sprue Research Foundation, whose goal is finding a cure for the disease. The foundation must raise two million dollars by 2003 in order to begin serious scientific research to that end. Anyone interested in making a tax deductible contribution should go to their Web site: www.celiacsprue.org. I personally believe that the work of the Celiac Sprue Research Foundation represents our best shot at a cure for celiac disease. - Scott Adams, Celiac.com. Medline Abstract: Intestinal Digestive Resistance of Immunodominant Gliadin Peptides. Am J Physiol Gastrointest Liver Physiol 2002 Oct;283(4):G996-G1003 Hausch F, Shan L, Santiago NA, Gray GM, Khosla C. Department of Chemical Engineering, Stanford University, Stanford, California 94305-5025. Two recently identified immunodominant epitopes from alpha-gliadin account for most of the stimulatory activity of dietary gluten on intestinal and peripheral T lymphocytes in patients with celiac sprue. The proteolytic kinetics of peptides containing these epitopes were analyzed in vitro using soluble proteases from bovine and porcine pancreas and brush-border membrane vesicles from adult rat intestine. We showed that these proline-glutamine-rich epitopes are exceptionally resistant to enzymatic processing. Moreover, as estimated from the residual peptide structure and confirmed by exogeneous peptidase supplementation, dipeptidyl peptidase IV and dipeptidyl carboxypeptidase I were identified as the rate-limiting enzymes in the digestive breakdown of these peptides. A similar conclusion also emerged from analogous studies with brush-border membrane from a human intestinal biopsy. Supplementation of rat brush-border membrane with trace quantities of a bacterial prolyl endopeptidase led to the rapid destruction of the immunodominant epitopes in these peptides. These results suggest a possible enzyme therapy strategy for celiac sprue, for which the only current therapeutic option is strict exclusion of gluten-containing food. PMID: 12223360
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