Search the Community

Celiac.com 04/25/2012 - In my experience growing up with undiagnosed celiac disease, I had to deal with several symptoms that my doctors had no answers for. One of the most frustrating of these was my skin troubles—dermatitis herpetiformis. After my experiences with misdiagnoses, and finally more recently, learning how to effectively get rid of dermatitis herpetiformis, I encourage parents to be particularly watchful for signs of dermatitis herpetiformis in their children, and I have some useful advice for those—children and adults—who have already been diagnosed with this annoying and sometimes quite troublesome rash. Since dermatitis herpetiformis occurs in 15 to 20% of celiacs, it’s worth any celiac’s time to learn more about this condition. By definition, dermatitis herpetiformis is a blistering and extremely itchy skin rash. It’s usually symmetrical in shape and is most commonly located on the elbows, knees, buttocks, and upper back. It’s common for people with dermatitis herpetiformis to have rashes appear in the same spot, and they can either be consistent or come and go. People can experience the rash on other parts of the body, and severity of symptoms can vary. Dermatitis herpetiformis is sometimes called the “gluten rash” or “celiac disease rash” because it occurs in people with a gluten intolerance or celiac disease. It is commonly misdiagnosed as eczema. Gluten is a protein found in wheat, barley, and rye. In people who have celiac disease, gluten causes an autoimmune response which results in the immune system attacking the lining of the small intestine—specifically the villi, the absorptive hair-like structures of the lining. With dermatitis herpetiformis, outbreaks are also triggered by gluten. Interestingly, unlike celiac disease which appears more in women than men, dermatitis herpetiformis is more commonly found in men by a ratio of about two-to-one. It is rarely seen in children under ten and first appears in the teenage years or even in one’s twenties or thirties. It may come and go, even if you’re eating a gluten-containing diet. Diagnosis is done with a skin biopsy. In most cases, a dermatitis herpetiformis diagnosis means celiac disease as well, even if you’re not obviously suffering from the characteristic intestinal symptoms of this disease. No matter what, the treatment is the same: a strict gluten-free diet. Dermatitis herpetiformis rashes are treated in two main ways--the gluten-free diet, of course, and antibiotics such as dapsone or sulfapyridine for those who aren’t able to tolerate dapsone. A truly gluten-free diet can eliminate dermatitis herpetiformis, but in my experience and according to the National Institutes of Health, a dermatitis herpetiformis rash responds dramatically to dapsone, within 48 to 72 hours. To treat the underlying cause of dermatitis herpetiformis, which is celiac disease, a strict gluten-free diet must be followed, but according to the National Institutes of Health, “Even with a gluten-free diet, dapsone or sulfapyridine therapy may need to be continued for 1–2 years to prevent further dermatitis herpetiformis outbreaks.” As a celiac with dermatitis herpetiformis, completely eliminating gluten from my diet has been the only lasting solution for dermatitis herpetiformis, but unfortunately I can accidentally ingest gluten from time to time, especially when I travel. In my most recent outbreak, I decided to get a prescription for dapsone. Although dapsone is a very strong drug with side effects and should be used sparingly, I was in need of something fast-acting. I followed the instructions exactly, and not only did it relieve the pain but within three days, I could see a remarkable change in the appearance of the dermatitis herpetiformis. After reexperiencing the painful and frustrating symptoms of dermatitis herpetiformis and the relief that came with proper treatment, I knew I had to address this topic to help others. I encourage everyone to get the word out about dermatitis herpetiformis so more and more people dealing with this misdiagnosed condition can get help just as I did. Resources: About.com: Dermatitis Herpetiformis, The ‘Gluten Rash’. Celiac Disease Awareness Campaign: Dermatitis Herpetiformis. eMedecine.Medscape.com: Dermatitis herpetiformis.

Celiac.com 07/24/2017 - Are many non-celiac gluten-free eaters actually treating undiagnosed medical conditions? Is the gluten-free movement less a fad than we imagine? Currently, about 3 million Americans follow a gluten-free diet, even though they do not have celiac disease. Known colloquially as "PWAGs," people without celiac disease avoiding gluten. These folks are often painted as fad dieters, or hypochondriacs, or both. Call them what you will, their ranks are growing. According to a study in the journal Mayo Clinic Proceedings, the number of PWAGs tripled from 2009 to 2014, while the number of celiac cases stayed flat. A new study from the Mayo Clinic supports these conclusions. The study derived from data gathered in the National Health and Nutrition Examination Survey, as well as serological tests. There is also a growing body of data that support the existence of non-celiac gluten sensitivities, though the evidence is not conclusive. Moreover, researchers really don't have any idea how many non-celiacs on a gluten-free diet may have legitimate reactions to gluten. The phenomenon has emerged in the past five years in medical literature. For a long time, researchers just assumed that only people with celiac disease would eat a gluten-free diet. About a decade ago, when research into celiac disease and gluten-free dieting began in earnest, says Joseph Murray, a celiac researcher at the Mayo Clinic and an author of the new research, researchers "didn't think to ask why people avoid gluten. When we designed this study 10 years ago, no one avoided gluten without a celiac diagnosis." The latest research by Murray and his colleagues showed that the total number of celiac cases leveled off in the last few years, while more non-celiacs began to avoid gluten for different reasons. Researchers still aren't sure what's driving the trend, and whether it will continue. Part of the increase is doubtless to growing awareness of gluten sensitivity. However, Benjamin Lebwohl, the director of clinical research at Columbia University's Celiac Disease Center, estimates that more than half of the 3.1 million PWAGs noted in this latest study have legitimate gluten sensitivity. "An increasing number of people say that gluten makes them sick, and we don't have a good sense why that is yet," Lebwohl said. "There is a large placebo effect — but this is over and above that." Non-celiac patients with gluten sensitivity often complain of symptoms similar to those of celiacs, such as intestinal problems, fatigue, stomachaches and mental fogginess. And while researchers don't know the reason, clinical studies have shown that these symptoms are often relieved by eliminating dietary gluten. One theory that is gaining some credence is that these people may be sensitive to other irritants, such as FODMAPS, a class of carbohydrates shown to cause gastrointestinal symptoms found in wheat, milk, onions and cheese. Look for more studies into this topic, as researchers seek to nail down answers about celiac disease and gluten-sensitivity, and similar symptoms in non-celiacs. Meantime, the number of people who suspect they have non-celiac gluten sensitivity, and who seek improvement in their symptoms by eliminating gluten from their diets, continues to grow. Source: DailyTribune.com

Celiac.com 09/25/2017 - There are currently several efforts underway to develop successful commercial enzyme treatments for celiac disease. Efforts include looking at the digestive enzymes in plants, such as the papaya and star fruits, including such predatory plants, such as the pitcher plant. One focus has been on developing enzymes that can break down gluten before it can trigger an immune reaction. This could prove helpful to many people with celiac disease. One such enzyme under development is Latiglutenase, formerly known as ALV003. Latiglutenase is a new name for an enzyme therapy designed to be taken with meals. The idea is that a person with celiac disease would take an enzyme tablet with a meal. If the meal had mild gluten contamination, the enzyme’s two recombinant proteins would break gluten into fragments that are not toxic to the immune system, thereby preventing exposure, and symptoms. But the stomach is a notoriously difficult environment to work in, so what seems like a simple idea quite a challenge from a science and biology perspective. Seeking to explore the ability of Latiglutinase to improve symptoms, a team of researchers recently set out to test latiglutenase on celiac patients who are seropositive despite following a gluten-free diet. The research team included Jack A. Syage, Joseph A. Murray, Peter H. R. Green and Chaitan Khosla. They are variously affiliated with the Division of Gastroenterology and Hepatology, Mayo Clinic, Rochester USA, the Celiac Disease Center at Columbia University, New York, USA, the Departments of Chemical Engineering and Chemistry, Stanford University, USA, and with ImmunogenX, Newport Beach, USA. "Though the ALV003-1221 trial was inconclusive regarding histologic improvement from latiglutenase, the evidence for symptom benefit, which is more quickly achieved, is quite convincing and clinically relevant," Joseph Murray, MD, of the Mayo Clinic in Rochester, Minn., said in a press release. In these trials, patients with celiac disease who were seropositive despite following a gluten-free diet saw major improvement in symptoms when taking latiglutenase with meals, according to a post hoc analysis of the CeliAction study. The team was really hoping to see histological improvement, but they feel satisfied that this trial shows, says Dr. Murray, that a "therapy to help patients struggling with symptoms due to celiac disease is now within reach." Stay tuned for more on efforts to develop effective enzyme treatments for celiac disease. Read more: Dig Dis Sci. 2017 Doi:10.1007/s10620-017-4687-7.

Celiac.com 10/14/2013 - A team of researchers recently set out to assesses the safety and efficacy of Aspergillus niger prolyl endoprotease (AN–PEP) to mitigate the effects of gluten in celiac patients. For their study, the researchers included celiac patients with positive serology and subtotal or total villous atrophy on duodenal biopsies, who follow a strict gluten-free diet (GFD) resulting in normalised antibodies and mucosal healing classified as Marsh 0 or I were included. Prior to this randomized double-blind placebo-controlled pilot study, the team measured complaints, quality-of-life, serum antibodies, immunophenotyping of T-cells and duodenal mucosa immunohistology. They then had patients consume approximately 7 grams of gluten per day as toast, along with AN-PEP for a two week safety phase. The team put subjects through a two week washout phase where they followed their usual gluten-free diets. The team then randomly assigned 14 patients to receive gluten, with either AN-PEP or placebo, for a two week efficacy phase. They also collected patient questionnaires on serum and quality of life during and after the safety, washout and efficacy phase. They conducted duodenal biopsies after both the safety phase and the efficacy phase. Change in histological evaluation according to the modified Marsh classification served as the primary endpoint. In all, 16 adults participated in the study. No serious adverse events occurred during the trial and no patients withdrew during the trial. The average score for the gastrointestinal subcategory of the celiac disease quality (CDQ) was relatively high throughout the study, indicating that AN-PEP was well tolerated. In the efficacy phase, the team saw no significant deterioration in the CDQ scores of patients consuming gluten with placebo or gluten with AN-PEP, nor did they observe any other differences between the groups. During the efficacy phase, neither the placebo nor the AN-PEP group showed significant antibody titers. IgA-EM concentrations remained negative in both groups. The team excluded two patients from entering the efficacy phase because their mucosa showed an increase of two Marsh steps after the safety phase, yet with undetectable serum antibodies. A total of 14 patients were considered histologically stable on gluten with AN-PEP. Also, after the efficacy phase, the team saw no significant deterioration in immunohistological and flow cytometric evaluation in the group consuming placebo compared to the group receiving AN-PEP. Furthermore, in four out of seven patients on placebo, IgA-tTG deposit staining increased after two weeks of gluten intake compared to baseline. In the seven patients receiving AN-PEP, one patient showed increased and one showed decreased IgA-tTG deposits. AN–PEP appears to be well tolerated. However, the primary endpoint was not met due to lack of clinical deterioration upon placebo, impeding an effect of AN–PEP. The research team included Greetje J Tack, Jolanda MW van de Water, Chris J Mulder of the Department of Gastroenterology and Hepatology, VU University Medical Centre in Amsterdam, The Netherlands; Engelina MC Kooy-Winkelaar, Jeroen van Bergen, and Frits Koning of the Department of Immunohematology and Blood Transfusion, Leiden University Medical Centre in Leiden, The Netherlands; Petra Bonnet, B Mary E von Blomberg, and Marco WJ Schreurs from the Department of Pathology, VU University Medical Centre, in Amsterdam, The Netherlands; Anita CE Vreugdenhil, with Department of Paediatrics, University Hospital Maastricht in Maastricht, The Netherlands; and Ilma Korponay-Szabo, with the Department of Paediatrics, University of Debrecen in Hungary, and the Paediatric Research Centre, University of Tampere, in Tampere, Finland. Source: World Journal of Gastroenterology, 10/03/2013