Q: What is dermatitis herpetiformis? Q: How common is celiac disease? Q: Are some groups at an even greater risk for celiac disease? Q: What are the symptoms of celiac disease? Q: How is celiac disease diagnosed? Q: Is there a cure for celiac disease? Q: I've just been diagnosed with celiac disease. How soon will I feel better? Q: How can I find help from others who have celiac disease? Q: What follow-up care should I have after diagnosis? Q: Why do my family members need to be screened for celiac disease? Q: Is it ok if I ingest some gluten if I do not experience any symptoms? Q: I feel hungry all the time. Is that normal? Q: Are there some celiacs who do not respond to the gluten-free diet? Celiac disease is a an autoimmune disorder that causes damage to the small intestine, which can lead to malabsorption of nutrients. A genetic intolerance to gluten, a protein found in wheat, rye and barley, triggers this destructive reaction of the immune system. Common resulting complications of celiac disease in adults include reduced bone density (osteopenia and osteoporosis), anemia, increased risk of other autoimmune disorders and malignancies, infertility and neurological problems (read more). Q: What is dermatitis herpetiformis? DH is the skin manifestation of celiac disease. It is characterized by an extremely itchy, watery blister or rash that is found on the limbs, trunk, face and scalp. The blisters are often mirrored on both sides of the body or face and reoccur in the same areas. The eruptions are often mistaken for and treated as other skin conditions including psoriasis, infected mosquito bites, contact dermatitis, allergies or "non-specific dermatitis." DH is a chronic, permanent condition and, if not treated with a gluten-free diet, may cause gastrointestinal symptoms at a later date whether or not the intestines shows damage initially. Less than 10% of patients with DH have GI symptoms, yet if you have DH, you always have celiac disease. DH is diagnosed by a small skin biopsy at the edge of an eruption. This must be done by a knowledgeable dermatologist as a sampling of tissue from the wrong section of the eruption can be confused with other skin conditions. The current treatment of DH is two-fold: 1- A strict adherence to a gluten-free diet. Dapsone is the usual drug of choice. Baseline blood tests should be performed prior to treatment with Dapsone and blood work should be done at regular intervals thereafter. Medications should be taken in the smallest effective doses for as short a time as possible and monitored by a physician.All of the ingested drugs have numerous potential side effects, some extremely severe. Topical creams containing cortisone and steroids are also prescribed to alleviate symptoms. None of these drugs eliminate the cause of the eruptions or the IgA deposits within the skin, they simply suppress the symptoms. The simple answer is ingested gluten. But iodine (potassium iodide, iodized salt, kelp), some anti-inflammatories and stress can exacerbate the disease. An area of controversy is whether or not gluten can be absorbed through the skin. Most medical experts say no, only dietary gluten is of concern. DH can be "exquistely sensitive" to gluten. Since the skin may not be rid of the IgA deposits for 2+ years after starting a gluten-free diet, flare-ups may continue to occur. The skin response is much slower compared to the healing of the intestinal mucosa. In particular, outbreaks of facial and scalp lesions while on otherwise adequate treatment is not uncommon. Q: How common is celiac disease? Originally considered a rare disease of childhood, celiac disease is now recognized as a common condition that may be diagnosed at any age. Recent studies have revealed an estimated average worldwide prevalence of 1 in 266 and a prevalence of 1 in 133 in the United States. This establishes celiac disease as one of the most common genetically based diseases that physicians will encounter. Because of lack of awareness, celiac disease is still vastly under diagnosed in the U.S. The disease has been reported in many countries from around the world including the Middle East with reports from Iran, from North Africa (Libya), from most countries in South America, from Australia and south Asia. Q: Are some groups at an even greater risk for celiac disease? Yes. Among ethnic groups the highest prevalence is in a North African refugee population, followed by Ireland. Within populations of European origins the groups with increased risk include family members of patients with celiac disease, patients with autoimmune diseases such as Type 1 diabetes, autoimmune thyroid disease and Sjögren syndrome, children with Down syndrome as well as patients with Turner syndrome, Williams syndrome, and patients with chronic liver disease (most notably primary biliary cirrhosis). Q: What are the symptoms of celiac disease? The vast majority of individuals with celiac disease have little in the way of gastrointestinal symptoms or have symptoms that may receive a diagnosis of irritable bowel syndrome. While the classical symptoms include diarrhea, weight loss and edema, other patients may present with constipation, anemia, bone pain or bone loss, chronic fatigue, skin problems, abnormal liver chemistries, dental enamel defects and neurological symptoms such as peripheral neuropathy, ataxia or seizures. Some patients with celiac disease are truly asymptomatic or have symptoms related to an associated autoimmune problem. Q: How is celiac disease diagnosed? The gold standard for diagnosis is the small intestinal biopsy, done during a procedure called endoscopy. The diagnosis is based on finding a series of abnormalities in an intestinal biopsy (increased inflammation and villous atrophy) that return toward normal on a gluten-free diet. As a follow up biopsy is not always necessary or performed, the combination of an abnormal biopsy and improvement of symptoms after gluten is eliminated from the diet is enough to establish the diagnosis. Blood tests that indicate higher than normal levels of specific antibodies are also used to support the diagnosis, but positive antibodies are not required to make the diagnosis. A gluten-free diet should not be started until all diagnostic tests are completed, as the withdrawal of gluten can change test results. The recommendation by physicians, nutritionists, naturopaths and osteopaths to try a gluten-free diet as a trial of therapy for gastrointestinal symptoms, without biopsy confirmation of the diagnosis, should be discouraged. Recent studies from Columbia University have indicated that it takes an average of 11 years from onset of symptoms to diagnosis in the U.S. and many physicians are consulted prior to diagnosis. Q: Is there a cure for celiac disease? There is currently no treatment for celiac disease apart from a strict, lifelong gluten-free diet. A number of studies are underway at Columbia University and other research centers examining the mechanisms by which gluten causes damage to the intestine. It is only through research into the way that the immune system causes the intestinal damage that innovative therapies, apart from a gluten-free diet, will be devised. Q: I've just been diagnosed with celiac disease. How soon will I feel better? Most patients respond rapidly to a gluten-free diet and will often report an increased feeling of well-being. How well they feel, and how quickly, may vary depending on the nature, severity and duration of symptoms prior to diagnosis. There may also be some "ups and downs" as they work toward the goal of eliminating all gluten from their diet. There is usually a learning curve to finding what food, drink and drug products are safe and which contain gluten. Q: How can I find help from others who have celiac disease? Celiac support groups can provide essential information and support for individuals as they learn how to navigate the maze of eating, shopping for and living gluten-free while trying to maintain a normal lifestyle. Locate a support group in your area by contacting national celiac disease organizations or checking listings on the internet. There are also internet discussion groups, mailing lists, and forums that focus on celiac disease. The Celiac Disease Center at Columbia University provides a variety of materials important to patients and their families. We also provide expert dietary counseling. For more information, click here. Q: What follow-up care should I have after diagnosis? Patients need follow-up after diagnosis. Symptoms that persist after commencing the diet require elucidation and appropriate treatment. Bone density should be measured because osteopenia and osteoporosis are common complications of celiac disease. Iron, folic acid, calcium and certain vitamins should be measured as there is often malabsorption of these nutrients. Certain vitamins and minerals may need to be administered, but the patient should be under a physician's guidance as to how much should be taken and for how long. Consultation with a dietitian experienced with the gluten-free diet is recommended. Many patients, especially the elderly, require a Pneumovax vaccination because hyposplenism and a resultant increased risk of pneumococcal infection is common. Blood tests are used to monitor adherence to the gluten-free diet, as antibody levels should normalize with time. Patients with celiac disease should have at least one follow-up biopsy to confirm their response to the diet and the normalization of the biopsy sample. Patients who are non-responders, or whose clinical situation is somewhat confusing, may need more repeated biopsies at intervals Patients who have persistent diarrhea after starting a gluten-free diet require a more intensive evaluation to exclude other food intolerances, colitis, bacterial overgrowth or pancreatic insufficiency. All these can be adequately treated if correctly diagnosed. Q: Why do my family members need to be screened for celiac disease? When the diagnosis is established in one family member, their first- degree relatives (parents, siblings and children) should have blood tests for celiac disease. This is because at least 10% of family members will have the disease, even if they are asymptomatic. Screening is also recommended for second-degree relatives (grandparents, grandchildren, aunts, uncles and cousins) as they are also at an increased risk for celiac disease. Family members who already have an autoimmune disease are at a greatly increased risk to have celiac disease (25%). The reasons to diagnose family members prior to the development of symptoms include the prevention autoimmune diseases and malignancy. Q: Is it ok if I ingest some gluten if I do not experience any symptoms? No. The majority of patients with celiac disease experience no symptoms when they ingest gluten, either intentionally or unintentionally. This led to the concept that patients, especially children may grow out of the disease. In addition, patients also consider that it is doing no harm to them. However the ingestion of even small amounts of gluten results in damage to the small intestine--regardless of the presence or absence of symptoms--and puts the patient at risk for resulting complications including malignancies and osteoporosis. Q: I feel hungry all the time. Is that normal? Yes, it is very common. Your body is making up for the time it wasn't fully absorbing foods. Hunger levels tend to normalize within the first months after eliminating gluten and beginning a well balanced diet of gluten-free foods. Q: Are there some celiacs who do not respond to the gluten-free diet? A few patients have a poor clinical and/or histologic (biopsy) response to the diet. An important step in assessing patients who are non-responders is to confirm the diagnosis of celiac disease by review of the original biopsy, preferably by an expert gastrointestinal pathologist. However, the most common cause of a poor response is continued gluten ingestion, which may be intentional or unintentional. An intolerance to other foods, such as lactose and fructose or soy can
be a reason for lack of improvement. Some non-responders may have reversible
pancreatic insufficiency or bacterial overgrowth, requiring treatment.
Colonoscopy might indicate other causes of the failure to respond, such
as microscopic colitis or inflammatory bowel disease. Though rare, other
causes of failure to respond to a gluten-free diet include lymphoma, ulcerative
jejunitis, collagenous sprue, autoimmune enteropathy or refractory sprue. Coming soon:
For more information on specific foods and grains that are safe, advice for children and further medical information please visit other sections of this website. |