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This article originally appeared in the Spring 2003 edition of Celiac.com's Scott-Free Newsletter. Refractory sprue. The specter of this condition is enough to cause fear in the hearts of many people living with celiac disease, yet this fear is based more on myth and misunderstanding than on medical science. For those who are concerned about their risk for developing refractory sprue, there is much that can be done. For those who have developed the condition, there are treatment options and new hope on the horizon. To begin, however, we must substitute fear with knowledge. What is refractory sprue? This question has been the subject of great scientific inquiry, and there are differing opinions on the relationship between celiac disease and refractory sprue. However, there are several general characteristics of refractory sprue that researchers seem to agree on: Presence of persistently damaged villi in the small intestine that are not repaired after the gluten free diet has been successfully initiated and/or maintained An increased presence of intraepithelial lymphocytes (IEL) in the small bowel Severe malabsorption Researchers think of celiac disease as the beginning of a spectrum of conditions that could, for a small percentage of patients, end up at the other end to be enteropathy associated T-Cell Lymphoma. Most people with celiac disease will respond to the gluten free diet and never move to the next stage in this spectrum. But for those that do, they will experience changes in their immune system and in the cells lining their intestine that could lead to cancer. The spectrum would start with celiac disease, and the next step would be the non-responsiveness of the immune system to the gluten-free diet, in other words, refractory sprue. Then in some cases, a condition called ulcerative jejunitis develops, and finally, the damaged lining of the intestine produces cancer cells that mimic the mutations of the abnormal immune system cells. How many people with celiac disease are affected by refractory sprue? First, there are no reported cases in the medical literature of celiac sprue in people under 20 years of age. Second, the number of celiacs affected by refractory sprue, while not known, appears to be very small. We know this because the current estimates for small bowel cancers in people affected by celiac disease, as reported at the 10th International Conference on Celiac Disease is less than 2.5%. Refractory sprue can result in small bowel cancers, but not in all cases. It is interesting to note that in a recent study of patients with "unresponsive" celiac disease, Dr. Joseph Murray and his colleagues found that of 49 patients evaluated, only nine actually had refractory sprue—25 were found to have gluten contamination in their diets. The most common symptoms presented by the patients who truly had refractory sprue were weight loss, steatorrhea and diarrhea, in that order. What makes refractory sprue different than celiac sprue? Again, there are several medical points of view on this, but all researchers would agree that one marker indicates the presence of refractory sprue, and it is not found in celiac disease. Abnormal Intraepithelial Lymphocytes (Immune Cells) The intraepithelial lymphocytes found in celiac disease have a normal-looking appearance under the microscope and they behave like normal celiac immune cells (they respond to gluten when they shouldnt). These lymphocytes have the ability to communicate with other cells using different types of messages on their cell surfaces. When diagnosing celiac disease, pathologists look for an increased number of IELs as an indication of celiac disease. In refractory sprue, however, there is a different kind of IEL that is found in great numbers. This immune cell does not look normal, and it ignores the presence or absence of gluten. This type of cell does not have the ability to communicate normally with other cells as it would be expected to do. However, it does have the ability to communicate with cancer cells, contributing to their development. It is not clear what causes this type of IEL to develop or mutate, contributing to refractory sprue. It is possible to have refractory sprue without having these abnormal lymphocytes; in this case, treatment with steroids often results in response to the gluten free diet and a reversal of the condition. French researchers have developed a test to determine whether a biopsy specimen reflects a normal course of celiac disease with a slow response to the diet, or the need for further testing because refractory sprue may be present. In paraffin wax, a specimen can be stained to determine whether or not the immune cells express CD8, a protein often found on intraepithelial lymphocytes in celiac disease. If CD8 is positive, the individual has celiac and is responding very slowly to the diet. If the sample is CD8 negative, refractory sprue could be the reason. How is refractory sprue diagnosed and treated? It must be established through a thorough diet history and antibody testing that the individual is adhering to a strict gluten-free diet. Then, all other gastrointestinal diseases have to be ruled out before a diagnosis of refractory sprue is made. Conditions to be ruled out include pancreatic insufficiency, lactose malabsorption, parasite infestation, intolerance to other food proteins, coexisting inflammatory bowel disease, and autoimmune enteropathy, among others. Diagnosis should include a test called an enteroscopy, which is a procedure that explores more of the small intestine, and often finds ulcerative jejunitis, a marker of damage in refractory sprue. In addition, because the abnormal IELs can proliferate throughout the gut, a colonoscopy is recommended to determine if lymphocytic colitis is present. Treatment options include the elemental diet (also used in Crohns Disease), total parenteral nutrition (tube feedings), steroids, immunosuppressive therapies such as Cyclosporine, Infliximab, and in some cases, chemotherapy. Treatment options depend on the extent of refractory sprue found on biopsy and the nature of the clinical symptoms involved. How can I reduce the chances of developing refractory sprue? Researchers agree that most cases of refractory sprue develop in people who were diagnosed very late in life or who didnt follow the diet completely. Note that it doesn't matter how much gluten was consumed in these patients, they still developed refractory sprue. So the best protection against developing refractory sprue is to follow the diet. Be honest with yourself, especially if you cheat a little. What are you eating? Are you sure there isnt a great gluten-free alternative out there? Hey, there's even beer nowadays, so don't dismiss the suggestion of great gluten-free brownies, cakes, pies, pasta, crackers, cookies, or whatever else you are craving. Deal with your feelings too. Its easy to get angry about how life is much harder for people with celiac disease—how everything related to food requires too much planning, preparation, and explanation. These feelings are perfectly justified, but they do not justify cheating on your diet. There are great "quick fix" cookbooks out there, even convenience meals that are gluten free. Do whatever it takes to stay healthy, and gluten-free for life. Don't forget regular visits to your gastroenterologist or internist. Follow-up care for people with celiac disease is incredibly important, even if the medical community hasn't recognized it yet. Regular antibody testing to monitor compliance with the diet is an extra level of protection that every celiac needs. A simple anti-gliadin antibody test (IGG and IGA), six months post diagnosis, a year post-diagnosis and then every year after that for the first three years is key. In fact, the most serious celiac disease complications tend to occur in the first three years after diagnosis. Veteran celiacs should have their antibody levels checked every couple of years. While refractory sprue remains a potential complication for any adult with celiac disease, a majority of adult celiacs in this country will not have to face this difficult condition. For those diagnosed, treatment options continue to improve and the disease is becoming easier to manage. Researchers continue to study refractory sprue in order to better understand how the condition behaves and to develop new treatments. For now, the best defense against refractory sprue is a good offense—living a completely gluten-free life.
If you're like me, you are excited about the upcoming holiday season, but also a little anxious about it. No, not the shopping part...the eating part! Each year I step on the scale and wish I had done something to better prepare my body for the additional calories that are to come during November and December. Well this time I did do something. I just completed the GetFit Gluten Free 7-Day Weight Loss Program. This weight loss program is easy and convenient. All you do is go onto their website, create an account, select the meals you want for breakfast, lunch, and dinner, then pay with a credit card. Within a couple of days you will have delicious, healthy, pre-cooked meals delivered to your doorstep. There is no need for calorie counting, no mixing powder with liquids, no cooking, and best of all: no doing dishes! Along with the food, you get a handy "how to" guide, which gives suggestions on what to drink with your meals, how often you should exercise, and other helpful tips. This company "gets it" when it comes to healthy eating, and they sincerely want you to succeed with your weight loss goals, whatever they are. The average weight loss using their program is 4-5 pounds or more a week, and if you have more than that to lose simply do the program for 2 to 3 weeks longer, or even a month. The price is reasonable, and there are no sugars/high fructose corn syrup, soy, or artificial anything in this food, and their customer service department rocks. A few hours after I ordered I received a phone call welcoming me as a new customer. What other company does that? None I know of. Mind blown. Don't waste another minute fooling around with anything else. For more info visit: http://Freshly.com. Review written by Patricia Seeley.
Celiac.com 09/01/2005 - The Gluten Intolerance Group® is pleased to announce our gluten-free food certification program, the Gluten Free Certification Organization (GFCO), the first program of its kind in the world! This new independent food processing inspection program will verify that food products meet the highest standards for gluten-free ingredients and a safe processing environment. Food products meeting these high standards will receive our gluten-free certification mark, allowing gluten-free consumers to easily identify foods that are free of gluten and possible cross-contamination from gluten. Key elements of the GFCO process include: Ingredients review, down to the original supplier Onsite inspections by experienced, trained independent (third party) Field Inspection Agents Product and ingredient testing using scientifically AOAC approved testing methods GFCO certification mark located on product packages for easy identification Gluten-free you can easily see Products labeled with the gluten-free certification mark allow consumers to easily identify products that have been independently verified to meet the highest standards for gluten-free ingredients and safe processing environment. First major food companies to adopt GFCO supervision and labeling Enjoy Life Foods and PureFit Nutrition Bar are the first food manufacturers to join the GFCO supervision program. These pioneering companies will display the gluten-free certification mark on their food products in the near future. GFCO maintains a system of independent verification through plant visits to assure that there have been no changes that might compromise its gluten-free status. GFCO certification uses the highest standards for gluten-free ingredients and safe processing environment, and cannot be altered or compromised. The GFCO certification standards exceed the requirements of current government laws and regulations. The voluntary participation of companies in this program will ensure public confidence in the gluten-free status of their products. The GFCO was developed in cooperation with the Food Services, Inc., a subsidiary of the Orthodox Union (the "OU"), the worlds largest and oldest kosher certification agency. The OUs nearly 500 field representatives, proficient in modern food production techniques and chemical and biological processes, will conduct plant inspections and product reviews for the GFCO. Like the Good Housekeeping Seal of Approval, the logo, one of the worlds best-known trademarks, instills confidence in the purchaser that the product has passed inspection and meets high quality standards. For more information visit: http://www.oukosher.org. The Gluten-Free Certification Organizations (GFCO) mission is to provide an independent service to supervise gluten-free food production according to a consistent, defined, science-based standard, that is confirmed by field inspections, in order to achieve heightened consumer confidence and safety. GFCO is governed by an independent volunteer board that includes physicians, food scientists and consumers. For more information visit: http://www.gfco.org, or call 206-246-6652. The Gluten Intolerance Group® (GIG)s mission is to increase awareness by providing accurate, up-to-date information, education and support for those with gluten intolerance, celiac disease/dermatitis herpetiformis, their families, health care professionals and the general public. GIGs volunteers, staff, and Board are knowledgeable, and our materials and resources are credible. GIGs Medical Advisory Board approves all education materials. For more information visit: http://www.gluten.net.