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| Support for dermatitis herpetiformis sufferers - Message boards, case studies, info... Come and join us. | ||
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The Dermatitis Herpetiformis Online Community Blog
| This weblog (blog) is a place for me to post articles of interest for people with DH and coeliac disease and enables me to communicate notices to site visitors. If you'd like to be advised when new posts are added, please either subscribe to the web feed or sign up for email notifications.
Annie Barnes (Site Admin)
Wanted - Coeliac families to try out free Biocard Celiac Test in exchange for offering their stories to the press.STOP PRESS!!!Do you live in the inner M25 area of the UK? JRBiomedical are currently recruiting 10 families with a known coeliac sufferer in them as part of a local media campaign for the new Biocard Celiac Test. Coeliac disease affects 1 in 100 people in the UK but 80% of sufferers are unaware they have the condition. Your risk of having a positive result is ten times greater if a close family member has already been diagnosed. It is therefore vitally important that first and second degree relatives of known sufferers are also screened for the condition. The new Biocard Celiac Test gives a result in less than ten minutes so your mind can immediately be put at rest. As accurate as those carried out in a hospital laboratory, the test marks the first step in the diagnosis process and is both quick and painless. If you meet the criteria for inclusion JRBiomedical will happily supply you with up to ten FREE tests with which to screen your parents, siblings, children and other close relatives. Please note, all participants must be willing to speak to the press about their experiences. If you would be interested in taking part in their campaign please contact Dr John Rees on j.rees@jrbiomedical.co.uk. The deadline for inclusion is the 30 September 2006.
Firm offers home-test kit for coeliac diseaseSource - icWales - Aug 11 2006A self-diagnosis kit which can identify gluten intolerance - the modern disease which affects thousands of families - is being marketed by a Welsh biomedical firm... ...Until now, diagnosing the illness has been a laborious process, and many people reach middle age before they realise they have a problem. Now the first do-it-yourself testing kit for has been launched in the UK by a Welsh biomedical firm. The test, which was originally developed in Finland, is designed to speed up the diagnosis of coeliac disease - the official name for gluten intolerance. It is hoped that it could help thousands of people who are currently undiagnosed and help prevent serious health complications. Coeliac disease is a genetically determined auto-immune disease. It is a life-long condition, but is not an allergy to gluten. Symptoms are varied and can include tiredness, anaemia, diarrhoea, weight loss, vomiting, bloating, mouth ulcers, and constipation. Sufferers must stick to a strict gluten-free diet after they have been diagnosed to enable the body to heal and also to avoid further damage to the small intestine and a recurrence of symptoms. Failure to eliminate gluten from the diet can increase the risk of osteoporosis, infertility and cancer. The Biocard Celiac Test is being distributed by JRBiomedical, which is based in Colwyn Bay. The test can give an accurate result in just 10 minutes. This is the first time people in the UK have had access to this potentially life-changing technology... ...The test works by analysing a pin-prick blood sample for a particular enzyme that is known to be a marker for coeliac disease. The test itself, which costs £19.99, is as easy to read as a pregnancy test and uses the same technology as that currently used to test for coeliac disease in the laboratory. Although the Biocard Celiac Test can tell whether a person has coeliac disease, the patient must still have that diagnosis confirmed by a gut biopsy before starting on a gluten-free diet. The self-test's main benefits lie in the fact that it can speed up diagnosis and referral to a consultant to carry out the necessary biopsy. Coeliac UK recently commented on this test in their July Newsletter. The home testing kits developed by Biocard will soon be available over the counter. While we welcome a new tool that could help to get more people diagnosed we would stress that blood tests for coeliac disease are not 100% accurate and there are individuals who may have false negative results - even if they have not changed their diet. The new self-testing kits should not replace a medical diagnosis but it may be a tool if someone is having difficulties getting diagnosed. We would still recommend that if anyone has symptoms of coeliac disease they should go to their GP. The Biocard Celiac test is currently on sale in the UK and readers can purchase a kit from http://www.coeliactest.co.uk/ for £19.99. Medscape Today recently evaluated the sensitivity and specificity of two commercial kits used to screen for coeliac disease, one being the Biocard Celiac Test. Excerpt: "Conclusions: The commercial kits described here produce high values of sensitivity and specificity, offering the general practitioner who suspects a possible case of CD the real possibility to look for anti-h-tTG antibodies in his own medical office during a standard visit at a satisfyingly low cost." Background: The Finnish company which developed the Biocard Celiac Test is called Ani Biotech, a biotechnology company developing, manufacturing and selling diagnostic rapid tests for laboratory, physician office and home use. Their web site states..."Ani Biotech products are marketed and distributed by specialized diagnostic and pharmaceutical companies worldwide. The largest customers are based in Asia and Europe. Some promising steps have been taken towards the US market in 2005. Several tests are now undergoing FDA registration." Dr John Rees, Managing Director of JRBioMedical, advised me that the Biocard tests are expanding out from Finland through Europe and JRBiomedical Ltd has the exclusive distribution rights for the UK.
Living with Dermatitis HerpetiformisWhat follows is based on fact together with a personal view of my own, and others', experiences of living with dermatitis herpetiformis (DH).DH is unbelievably itchy and stings and burns until a patient usually scratches and draws blood. It seems like the pain is deep under the skin rather than a surface feeling. Often the sensations arise a day or so before the spots are actually visible. Purplish marks remain for months afterwards, even once the condition is treated. The rash can appear clumpy, in patches or as single spots and these are blistery in nature. If you look at the photographs on the DH Online Community web site you'll see that some pictures look quite different to others. Different parts of the body can highlight slightly different looking rashes and some people have milder symptoms than others, etc. The rash itself can move through different stages, sometimes being more severe than at other times, and can even appear to go into remission for a period of time. Dermatitis herpetiformis is, more often than not, symmetrical, for instance, it'll manifest on both elbows, both knees, both shoulder blades, etc. The skin biopsy, which is performed to check for DH, is a specialized test using immunofluorescence and many sufferers can go for several years without a correct diagnosis. This can be because, either the biopsy isn't performed correctly (it should be taken from unaffected skin), the laboratory isn't experienced enough to examine the sample, or the dermatologist simply doesn't recognize it in the first place. All these factors can contribute towards making DH difficult to diagnose. It can be an anxious time when patients don't know what they have wrong with them as DH is often misdiagnosed as scabies, atopic dermatitis, eczema, hives, psoriasis, to name a few. There seems to be some debate as to whether all DH sufferers also have coeliac disease (CD). It is the view of many specialists who have vast experience of DH, that all DH patients have some form of gut involvement, even if it's a case of increased lymphocytes in the intestine. This can sometimes be missed under a microscope and therefore the patients can be told they don't have CD. In addition, many people with DH don't experience typical CD-related intestinal symptoms, as the gut damage is often slight, and they may have negative coeliac blood results because the positivity of these correlates directly with the amount of intestinal damage. As with those who have coeliac disease, it's well worth family members of DH patients getting tested for CD - some relatives can have CD without necessarily having DH. Once diagnosed, some DH sufferers are never told they have coeliac disease and the need to keep to a strict gluten-free diet, so they are vulnerable to the conditions which are associated with CD. These include osteoporosis, lactose intolerance (in particular in the early stages after diagnosis) and other autoimmune conditions such as thyroid disease, pernicious anaemia and diabetes. As a result, for years and years many rely upon drugs (usually dapsone), which can be prescribed to suppress the rash (but these do not heal the gut). These drugs can have nasty side effects too, including haemolytic anaemia and inflammation of the liver. Patients may also suffer with anaemia and poor nutritional status due to malabsorption. All this can improve with a gluten-free diet. DH sufferers may be on a strict gluten-free diet for several months before there is even the slightest relief in their symptoms, unless they are taking the drugs. It can sometimes be 2 years or more before the skin is completely clear. After this, if a DH sufferer mistakenly eats gluten, there may be no apparent effect, either in the intestine or on the skin. However, damage to the villi almost certainly takes place. For others, they may find their rash flares up again. Some do say they have tummy troubles. For many, the motivation to stay gluten-free is harder than for people with coeliac disease alone. It can be tempting to pop a pill instead of restricting one's diet if intestinal symptoms are minimal or non-existent because, apart from being able to cease taking the drugs, there may seem to be no other improvement in general well-being. Having said this, not all DH patients respond to the gluten-free diet and they need to continue taking a maintenance dose of dapsone to keep the rash under control, which can be very frustrating indeed. For some DH sufferers, there is the prospect of trying to cope with the social stigma of having a horrible looking rash on various parts of the body and forever scratching. Disturbed sleep is also very common. The gluten-free diet also has its drawbacks, both financially and socially. In the UK, diagnosed patients are eligible to receive certain gluten-free foods on prescription, which can help with the cost. However, commercially-bought gluten-free products are generally at least twice the price of equivalent standard food products. Eating out, holidays, travel, social gatherings involving food can all prove stressful and this can lead to social isolation. The situation is improving day by day as more people are diagnosed with coeliac disease and as a result, more restaurants and eating establishments are beginning to provide a gluten-free menu, albeit with limited choice. Because DH is still relatively rare (the Coeliac UK website quotes around 1 in 10,000), sufferers can feel alone and cut-off and it's not always easy to identify one another at local coeliac group meetings. In view of this, the DH Online Community website and message boards were created to give patients the opportunity to meet online. I feel it's important for DH sufferers to be identified as a separate group with their own needs because diagnosing and dealing with DH can be quite different to dealing with CD alone, although the general treatment, namely the gluten-free diet, is ultimately the same. One advantage of DH (if you can say that about an illness) is that once it's been diagnosed correctly, there is usually a treatment, namely the gluten-free diet and/or drugs. Treatments for psoriasis, for example, can be a lot more hit and miss. Annie Barnes The DH Online Community Administrator
FSA begins consultation on loose foods labelling (UK)Source - Coeliac UKThe consultation process which is due to report in 2007 has now begun for the draft voluntary best practice guidance on the provision of allergen information for loose foods that are not pre-packaged. Coeliac UK has been involved in developing this in conjunction with the Food Standards Agency. Click here for information on the FSA loose foods consultation. The FSA has also published the Guidance on Allergen Management & Consumer Information. This provides best practice guidance on managing food allergens with particular reference to avoiding cross-contamination and using appropriate advisory labelling (e.g. 'may contain' labelling). Click here for information on the FSA best practice guidelines.
Email subscriptions now workingIt has come to my attention that the blog's email subscription sign-up wasn't working properly at first but this has now been fixed. If you wish to subscribe, please try again.
Latest DHOC Mini Poll ResultsThe results of the latest mini poll on the Dermatitis Herpetiformis Online Community web site are:Question: DH sufferers, did you have low energy levels before diagnosis? Answers: Yes. My energy levels have improved since going on a gluten-free diet. - 43 votes (45.2%) No. My energy levels were fine. - 26 votes (27.3%) Yes. My energy levels are still low since going on a gluten free diet. - 16 votes (16.8%) Yes. My energy levels are still low. I am not on a gluten free diet. - 8 votes (8.4%) Yes. My energy levels have improved. I am not on a gluten free diet. - 2 votes (2.1%) Total votes: 95 ************************************* The next mini poll question is: DH sufferers, did you suffer classic coeliac symptoms (ie. bowel related problems) before diagnosis? DH sufferers, click here to vote.
NIH Launches Celiac Disease Awareness Campaign for Health Care Providers and PublicNIH Launches Celiac Disease Awareness Campaign for Health Care Providers and PublicJuly 18, 2006 News Release - National Institutes of Health (NIH) The National Institutes of Health (NIH) today announced the launch of a campaign to heighten awareness of celiac disease, an autoimmune disorder that interferes with the absorption of nutrients from food. The campaign stems from consensus recommendations of an independent panel of experts convened by the NIH to assess current diagnosis, treatment, and management of the disease. "We now know that celiac disease is more prevalent that previously thought - affecting nearly 1 percent of the U.S. population - and remains under-diagnosed," said Griffin P. Rodgers, M.D., acting director of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), the NIH institute leading the effort. "Through the campaign, we hope to increase physician awareness of the disease, resulting in earlier diagnosis and better outcomes for celiac patients." Developed by the NIDDK, with coordination among the professional and voluntary organizations working on celiac disease, the campaign offers materials and resources for health professionals and the public about the symptoms, diagnosis, treatment, and management of celiac disease. The campaign offers fact sheets, booklets, practice tools for health professionals, NIH research information, and resources from professional and voluntary organizations that focus on celiac disease. Celiac disease is an autoimmune response to gluten, a protein found in wheat, rye, and barley. Symptoms of celiac disease range from gas, diarrhea, and abdominal pain, to delayed growth, certain skin rashes, infertility, and osteoporosis. Treatment for celiac disease is adherence to a gluten-free diet. "One of the challenges with celiac disease is the vast array of symptoms associated with the disease," said Stephen P. James, M.D., director of the Division of Digestive Diseases and Nutrition (DDN) at the NIDDK. "We are hoping to educate health professionals and the public that celiac disease is not only a gastrointestinal disease." For more information about the campaign or to download any of the campaign materials, visit http://www.celiac.nih.gov/. For more information about the consensus development panel's recommendations, visit http://consensus.nih.gov/2004/2004CeliacDisease118html.htm. The NIDDK, part of the National Institutes of Health (NIH), conducts and supports research on diabetes; endocrine and metabolic diseases; digestive diseases, nutrition, and obesity; and kidney, urologic and hematologic diseases. Spanning the full spectrum of medicine and afflicting people of all ages and ethnic groups, these diseases encompass some of the most common, severe, and disabling conditions affecting Americans. The National Institutes of Health (NIH) - The Nation's Medical Research Agency - includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. It is the primary federal agency for conducting and supporting basic, clinical and translational medical research, and it investigates the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit http://www.nih.gov/.
A good way to improve diagnosis?Source - August eXG: Coeliac UK NewsletterResearchers in Italy have developed an approach to help improve early identification of coeliac disease. The strategy involved testing patients with pre-defined signs and symptoms plus those in at-risk groups, such as relatives of coeliacs and those with auto-immune diseases associated with coeliac disease. The researchers worked with a total of 129 primary care doctors, who used the strategy to identify patients who should be tested for coeliac disease. The year before the study started the prevalence of diagnosed coeliac disease was 1:1506 in adults and 1:827 in children. This was significantly improved during the year of the study and continued to improve for the following year, to increase the diagnosed prevalence to 1:832 in adults and 1:602 in children. The case findings show that with a defined strategy set out for primary care doctors to follow, it can clearly improve diagnosis rates. Berti I et al. Coeliac disease in primary care: Evaluation of a case-finding strategy. Digestive & Liver Disease 2006;38(7):461-7
XII International Celiac Disease Symposium 2006This is a notice from the Celiac Disease Center at Columbia University who are hosting the XII International Celiac Disease Symposium 2006.************************************ November 9-11, 2006 Hilton NY Hotel New York, NY 10019 We're looking forward to your participation in what will be largest gathering of celiac experts in the world. The XII International Celiac Disease Symposium is expected to attract healthcare industry leaders, clinicians, nutritionists, patients, diagnostic and pharmaceutical executives, scientists, policy makers and journalists and will touch on every aspect of adult and pediatric celiac disease - diagnosis, treatment, science and public policy. Register before August 15, 2006 to receive the early registration rate... Program There are three programs to select from: International Symposium This is a scientific program designed for physicians and scientists. This program is AMA and ADA approved with 18.75 hours of category 1 CME credit. http://www.celiacdiseasecenter.columbia.edu/symposium/program_symposia.html Clinical Forum This program is designed for patients, dietitians, nurse practitioners, nurses, physician's assistants and others in the healthcare arena who would like to enhance their knowledge of the most current research and developments in patient care in the field celiac disease. This program is AMA and ADA approved with 19.5 hours of category 1 CME credit. http://www.celiacdiseasecenter.columbia.edu/symposium/program_clinical.html Connecting Teens With Celiac Disease Connecting Teens With Celiac is an interactive, educational program that is designed for teens that are 13-18 years of age and have been diagnosed with celiac disease or are a first or second degree relative or friend of someone who has been diagnosed with celiac disease. http://www.celiacdiseasecenter.columbia.edu/symposium/program_teens.html Register NOW! Register before August 15, 2006 to receive the early registration rate... http://www.celiacdiseasecenter.columbia.edu/symposium/attendee_categories.html Housing Rooms are still available at our $285 reduced rate at the Hilton NY Hotel where the symposium will be held. The rooms will go quickly--reserve now! http://www.hilton.com/en/hi/groups/personalized/nycnhhh_icd/index.jhtml#reservation For additional information visit us online at http://www.celiacdiseasecenter.columbia.edu/symposium/index.html We're looking forward to seeing you in November at the XII International Celiac Disease Symposium! All the best, Celiac Disease Center at Columbia University 180 Fort Washington Avenue Suite 934 New York, NY 10032 Tel. (212) 342-4529 Cell (646) 812-1212 Fax (212) 342-0447 Email: cb2280@columbia.edu XII International Celiac Disease Symposium http://www.celiacdiseasecenter.columbia.edu/symposium/
Understanding The Immune Response To Forbidden Foods In Celiac DiseaseMediLexicon30 Jul 2006 Individuals who suffer from the chronic autoimmune condition celiac disease possess serum antibodies to gluten, a protein found in wheat, barley and rye, causing a wasting away of the small intestine and poor absorption of nutrients. Currently, the only effective treatment is the life-long elimination of gluten from the diet. Antibodies to the enzyme tissue transglutaminase are found in an overwhelming majority of cases, and cross-react to gluten. This reaction occurs almost exclusively in patients with the human leukocyte antigen types HLA-DQ2 and HLA-DQ8. Over 95% of celiac patients carry 1 or 2 of the HLA-DQ2 or HLA-DQ8 genes. In a study appearing online in July, in advance of print publication in the August issue of the Journal of Clinical Investigation, Ludvig Sollid and colleagues from the University of Oslo used intestinal T cells from celiac patients to locate DQ2 and DQ8 binding sites (known as epitopes) within 2 gluten proteins - alpha-gliadin and gamma-gliadin. The authors show that DQ2 and DQ8 are preferentially triggered by deamidated peptides and have a preference for binding to negatively charged residues in the gluten proteins. In addition, the authors examine the similarities and differences between peptides recognized by these two molecularly distinct DQ molecules and their association with disease susceptibility. These insights will aid our understanding of the immunopathology of celiac disease and are broadly relevant to the mechanisms of immune recognition at work in other autoimmune diseases.
Welcome to the new DHOC BlogFor subscribers to the old DHOC mailing list, many will know that it has been far too long since I sent out the last DHOC Newsletter. The main difficulty for me has been the time factor and so, in a bid to overcome this dilemma, I have decided to dispense with the newsletter and start up a new blog instead. And here it is!What's a blog, I hear some of you asking. Well, in simple terms, a blog is a web site or section of a web site, where you can write stuff on an ongoing basis. New stuff shows up at the top, so visitors can read the latest news. The subject can be anything you want it to be. I've decided to use mine to post articles of interest for people with DH and coeliac disease and to communicate notices to you, my web site visitors. Why will this save me time? Well, instead of putting together a complete newsletter, I can post articles one-at-a-time, and you can be kept updated on a regular basis. If you want to receive regular updates, you will need to subscribe to the web feed or sign up for email notifications. These options are available on every blog page in the right hand column. For more on web feeds, try the following link: http://computing-dictionary.thefreedictionary.com/syndication+format?p And so... as they say, "as one door closes, another one opens", I hope you'll decide to join up to the new DHOC Blog. All the best. Annie (DHOC Admin)
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