GLUTEN-FREE: AN INTRODUCTION TO CELIAC DISEASE

Transcription

1 Online Continuing Education for Nurses Linking Learning to Performance INSIDE THIS COURSE CASE STUDY... 2 WHAT IS CELIAC DISEASE?... 3 WHAT IS GLUTEN?... 4 WHY IS GLUTEN AN ISSUE?... 4 WHERE IS GLUTEN FOUND?... 5 SIGNS AND SYMPTOMS OF CELIAC DISEASE... 6 HOW CELIAC DISEASE IS DIAGNOSED... 7 STEPS AFTER DIAGNOSIS WITH CELIAC DISEASE... 7 A GLUTEN-FREE LIFE... 9 SUMMARY... 9 RESOURCES REFERENCES CE EXAM EVALUATION RGISTRATION FORM GLUTEN-FREE: AN INTRODUCTION TO CELIAC DISEASE 1.79 Contact Hours Written by: Polly Warring, PT Objectives After completing this course, the learner will be able to: Define celiac disease. List three grains not included on a gluten free diet. Describe three symptoms presented by a typical patient diagnosed with celiac disease. Outline the two main steps in the course of diagnosis for celiac disease.

2 Page 2 CASE STUDY A seven year old female presents to the pediatrician with an itchy, blistering rash on her sacral region. The parent reports that the rash has been increasing in severity for two to three weeks. Over the counter creams have brought some relief to the symptoms, but have not cleared the rash. The pediatrician s diagnosis is impetigo and a cream is prescribed. The patient returns one week later and the blistering and itching of the rash have increased. The patient is referred to a dermatologist. The dermatologist sees the patient several times over the next few months during which scrapings for fungal infection are taken. Fungal test results are negative and a variety of creams are dispensed. The itching and blistering symptoms continue and are now appearing on the elbows and knees. The patient is taken to an allergist. Food scratch tests are given and found negative for wheat, dairy, eggs, and chocolate. At the suggestion of a family friend who has celiac disease, the parents ask the allergist to rule out celiac disease as a cause for the rash. The Celiac Comprehensive Panel is ordered and the results are positive. The time until correct diagnosis of this patient: one year. This is not an unusual road to diagnosis for many patients with celiac disease. In fact, the average time for correct diagnosis of celiac disease is nine years (Green, 2010, p.3). The patient in this case study had a textbook case of dermatitis herpetiformis: itchy, blistering rash on sacral region, elbows and knees. This rash is associated with celiac disease, but it went unrecognized within a community of highly accomplished physicians. Celiac disease is an autoimmune disease that is not well known among the general medical community at this time and some symptoms mimic other, more common diseases.

3 Page 3 WHAT IS CELIAC DISEASE? Celiac disease is a disorder that causes the body s immune system to respond to the protein in certain grains (Bower, 2007, p.2). It is a multisystem disease which is one of the most underdiagnosed hereditary autoimmune disorders (Green, 2010, p. 20). In this autoimmune disorder, the body negatively reacts to certain protein chains called glutens. The body attacks itself when gluten enters the intestines. The negative reaction causes the villi of the small intestine to become damaged and eventually destroyed. This damage extends to other parts of the body as it progresses (Green, 2010, p. 20). The intestinal villi are very important nutrient absorbers, and they help the body get the benefit from the food that is eaten. When the villi in the small intestine are damaged, nutrients cannot be absorbed, and malnutrition results. It is still unclear why this response occurs only in certain genetically predisposed individuals and can be triggered at varying times in their lives (Green, 2010, p.20). The diagnosis for celiac disease is life-long. The patient never outgrows it (Green, 2010, p. 4). Celiac disease is passed on genetically. There is a 10% chance that first degree relatives of a patient have Celiac Disease (James, 2010, p. 107). At this point, there are two genes associated with the disease. They are HLA-DQ2 and HLA-DQ8. The patient must have at least one of these genes to have celiac disease (James, 2010, p. 107). However, people with these genes do not necessarily have the disease; they might be carriers only. Gliadin Molecular Formula = C 29 H 41 N 7 O 9

4 Page 4 WHAT IS GLUTEN? Gluten is the environmental trigger that has to be ingested to manifest celiac disease. It is found in many foods in our modern society and the patient with the disease needs to be proactive to avoid it. Gluten is commonly found in baked goods and pastries made with wheat flour. Gluten holds the dough together and makes the dough pliable, thick and able to be kneaded (Bower, 2007, p. 65). Its name comes from the Latin gluten, for glue (James, 2010, p. 106). Without gluten, bread dough is not very elastic. Processed foods often use gluten products as filler and thickening agents. The best description of gluten and its related issue-makers can be found in Celiac Disease: A Hidden Epidemic, by Green and Jones: Gluten - The storage protein of wheat. Essentially, the portion of wheat flour that makes it sticky. The gluten fraction that is most studied in celiac disease is called gliadin, but there are other proteins that chemically resemble gliadin in rye (secalins) and barley (hordeins). These proteins are not strictly glutens, but are generally included in the term and are toxic to people with celiac disease. WHY IS GLUTEN AN ISSUE? Gluten is a combination of two other proteins called gliadin and glutenin. They are known as prolamins because they are rich in the amino acid, prolamine (Bronski, 2012, p. 20). It is the gliadin protein that causes the body to go on the attack for the patient with celiac disease when gluten is ingested (James, 2010, p. 106). The chemical make-up of the gliadin, hordein, and secalin cause the body to have an immune reaction (Bower, 2007, p. 2). Let s put this process under a microscope. Gluten is composed of proteins and proteins are made up of chains of amino acids. First, the amino acids are strung together, like pearls on a necklace (primary structure). Then the amino acid necklace twists and turns on itself (tertiary, or three dimensional at this point). Sometimes those three dimensional structures bind together (quaternary structure). All of the structures except the primary structure have weak amino acid bonds (Bronski, 2012, p. 20). When those weak bonds are broken, the protein is said to be denatured. Bronski, in The Gluten-Free Edge, points out that we denature proteins all the time. When egg whites are beaten until they are stiff, that is a reversible denaturing. If an egg is cooked, and the color turns from clear to white, that is an irreversible denaturing. At the most basic level of structure, the primary structure talked about above, it is the job of the enzymes in the body to break the amino bonds of the chains (Bronski, 2012, p. 20). These enzymes break down the peptides (multiple amino acids strung together) into individual amino acids so that the body can absorb them and use them. They do this in several different ways. Some of the enzymes eat along the string starting from the ends. Other enzymes act as scissors and move along the chains snipping the bonds (Bronski, 2012, p. 20). Even in people not diagnosed with celiac disease, gluten resists the bond breaking enzymes (for the most part) and travels through the digestive system virtually undigested.

5 Page 5 WHERE IS GLUTEN FOUND? Gluten is found in wheat, rye, barley, triticale, kamut, spelt and all of their derivatives. This means that under the heading of wheat, you would find farina, graham, semolina, durum, bulgur, and matzo, all dangerous for those with celiac disease. Under the heading of barley, anything with malt (chocolate malt) or malt flavoring (beer) would not be safe to consume. Also on the unsafe food list are oats. They do not contain gluten, but are often exposed to cross contamination during the manufacturing process due to the fact that they are usually grown next to and processed with wheat. The person with celiac disease must learn to read labels scrupulously. Wheat is often used as filler for many food and non-food products. When formulations change, the labels must be checked again for the presence of gluten. Medications can contain gluten and the patient must check directly with the manufacturer to ensure their own safety. A product might not contain gluten in the ingredients, but if it is manufactured in a facility with other gluten-containing products, it is considered unsafe for the person with celiac disease because cross contamination can occur. Many manufacturers are now labeling their products with allergy information, including the presence or exposure to wheat.

6 Page 6 SIGNS AND SYMPTOMS OF CELIAC DISEASE Celiac disease can present itself in many different ways. The most classic symptoms involve the digestive system itself and may include (Bower, 2007, p.7): Chronic diarrhea Malabsorption Weight loss Irritable bowel syndrome Abdominal distension Excessive flatulence may also be an issue. Other symptoms that do not point to digestive difficulties, but can be signs of celiac disease, can include (Bower, 2007, p. 7): Short stature Delayed puberty Iron-deficiency anemia Recurrent fetal loss Infertility Persistent cold sores Autoimmune diseases Peripheral neuropathy Cerebellar ataxia Dental enamel hypoplasia Osteoporosis may also be a symptom. The itchy, blistering dermatitis herpetiformis rash on the buttocks, knees, and elbows is also a clue that the person might have an issue with gluten. Not everyone with celiac disease has dermatitis herpetiformis (DH), but those with DH have celiac disease. Populations at risk include those with Type 1 diabetes mellitus, first and second-degree relatives of individuals with celiac disease, individuals with Turner syndrome, and those with Downs or Williams syndromes (Bower, 2007, p. 7). In the literature, there are many signs and symptoms noted that were cleared once the person went on a gluten-free diet. These include migraines, sinus headaches, mood swings, emotional issues, muscle and

7 Page 7 joint pain. It is a disease that can affect many systems and can be misdiagnosed repeatedly. It is very common for a patient to be told for 20 years that they have irritable bowel syndrome, when in fact, it is celiac disease. HOW CELIAC DISEASE IS DIAGNOSED The typical route to diagnosis is a long one for most patients. They may have gone to many doctors with their symptoms, but celiac disease is not a typical diagnosis. The patient may have tried numerous stomach medicines and topical creams, but nothing has solved the problem. Once a medical professional begins to put the pieces together with the various symptoms and suspects celiac disease, the first step is a blood test called a Celiac Comprehensive Panel. The blood is tested for the presence of immunoglobulin A (IgA), tissue transglutaminase (ttg), and immunoglobulin A antiendomysium (AEA) antibodies. These tests are considered 98% accurate and specific for celiac disease (Bower, 2007, p.10). A positive blood test will lead to an endoscopy, the gold standard for celiac disease diagnosis. The physician will examine the intestine and take three to four biopsies of the small intestine to assess the damage done to the villi. The biopsy specimen is then sent to the laboratory for confirmation of the diagnosis (Bower, 2007, p.10). To confirm the presence of dermatitis herpetiformis, a biopsy of the skin close to the rash (not directly on the rash) needs to be performed. It is important that the patient continues to eat gluten until all of the diagnostic testing is done. Starting a gluten-free diet too early in the diagnosis process will skew the results. STEPS AFTER DIAGNOSIS WITH CELIAC DISEASE A diagnosis of celiac disease can be shocking to the patient. To be told that they must avoid gluten for the rest of their lives can be overwhelming and depressing. We live in a world where gluten seems to be hiding around every corner. The first year of eating gluten-free has a steep learning curve and can be socially isolating. It is important that the newly diagnosed patient with celiac disease forms a patient care team consisting of a dietician, a gastrointestinal doctor, and a support group, if available. All of the members of the care team need to know the ins and outs of celiac disease because they will be supporting and monitoring the patient while he or she adjusts to the gluten-free diet. The primary care physician needs to be alerted of the patient s health status so that any changes in maintenance medicine and future medical needs can be addressed. The pharmacy must also be alerted so that they can note the gluten-free status in the patient s file. If the patient is a child, the school system, most notably the school nurse and the child s teacher, need to be alerted. There are administrative disability plans that can be filed to accommodate the child s dietary and social needs that vary by state, if needed. A dietician can give the patient tips for daily living and monitor food diaries to make sure the patient has a balanced diet that is also gluten-free. The gastrointestinal doctor can follow up with blood tests to monitor the organs and how the levels from the Celiac Comprehensive Panel decrease as the patient adheres to

8 Page 8 the gluten-free diet. The support group helps with the social isolation and updates the patient with new discoveries related to the gluten-free lifestyle. It is very important that children with celiac disease know what is safe and unsafe to eat, especially if they are in school. They need to learn how to become label readers. Dieticians can provide resources and recommend books that will help children with the transition. One book talks about an easy way for children to remember the unsafe grains. In Adam s Gluten Free Surprise, Debbie Simpson suggests that the acronym BROWN can be memorized to help remember that Barley, Rice, (most) Oats, and Wheat are Never ever to be eaten on the gluten-free diet. Another helpful book, The GF Kid by Melissa London, is written by a child with celiac disease and gives hints and support to other gluten-free children. After the support care team is assembled, the patient needs to clean the house of all gluten products. If the household will be divided, with some people still eating gluten products, then designated areas for gluten-free food need to be established and the family members need to be educated about the dangers of contamination. A few crumbs of gluten are all that need to be ingested to set off the autoimmune reaction. Designate clearly marked containers in the pantry and freezer to keep the gluten and gluten-free products separate. Clearly label condiments such as butter or jelly as belonging to the gluten or gluten-free container. Contamination could occur from dipping a knife into the condiment jar after it touched bread that has gluten. Using green and red plastic containers can help distinguish safe from unsafe foods for children with food allergies. It may also be useful when family members or babysitters are watching the child and need to know which snacks are safe. At the beginning of each school year, speak to the teacher and provide a description of celiac disease and the needs of the child. Gluten-free snacks may also be given to the teacher so that the child will have something to eat during snack time or when other treats are handed out. When going to birthday parties, make sure they have gluten-free cupcakes to eat when the cake is cut. When a family member is diagnosed with celiac disease, there is a 10% chance that siblings also have it. In the family in the case study, two of their other children ended up with the gluten issues even though they did not show obvious symptoms of it. In the literature, these kinds of patients are called silent celiacs. In fact, one of those two could not officially be diagnosed with celiac disease from the endoscopy because the inflammatory cells were not visible in the biopsies. However, the gastrointestinal damage was there and his blood test was positive, so he has been placed on the gluten-free diet. Other relatives need to be alerted of the celiac disease diagnosis because someone may have been struggling with digestive issues for years and may want to get tested for celiac disease. The last step, which is one that will be a lifelong process, is to become a gluten detective. Gluten is everywhere. It is in the obvious products such as pastries, cookies, and cakes. It is also in the not-soobvious products such as Play-Doh, licorice, lip balm, and envelope glue, to name a few. It is used as filler in most processed food and soup. To the patient with celiac disease, it seems to be everywhere. The patient must be aware of food labels and cook more food with basic components.

9 Page 9 A GLUTEN-FREE LIFE When someone is first diagnosed with celiac disease, there can be a myriad of emotions. The patient might feel relief that there is finally an answer for the many unanswered health issues. There might be shock, fear, or grief over the strict, gluten-free diet that must be followed. As the patient begins to realize how much gluten is in the world, there might be depression over the social aspect of the disease. Food, especially gluten-filled food, marks almost every social gathering and celebration, and now concessions will need to be made by the patient to adapt to the situations. They might have to bring their own food or abstain from eating at social gatherings. Grief is a very common reaction and must be acknowledged for this large lifestyle change. Many changes and challenges will occur around the household. There are some steps that can be taken to ease the lifestyle transition: Prepare gluten-free meals ahead of time and store in the freezer. Teach children to read food labels and find ingredients containing gluten. Keep track of medicines that cause symptoms to flare (e.g. Ibuprofen and Claritin). Be aware of the menu at social gatherings and take gluten-free options, if necessary. Life is not easy for the patient who has to stop eating gluten, but as society, the food industry, and the medical community become more aware of the issue of using gluten as filler, life may become easier. It has already improved in just the last ten years, when there was very little choice in food. Food labeling legislation is making its way through the food laws so that those with celiac disease will be more informed of the gluten content of food. SUMMARY Since being diagnosed, the child described in the earlier case study has felt almost complete relief from the painful, itchy rash caused by celiac disease. She has been gluten-free for one year, though it continues to be a learning process. As members of the medical community, it is our job to take responsibility and learn about celiac disease. We need to be able to include it in the differential diagnosis when we are dealing with patients who have blistery rashes and for those with chronic digestive problems. We need to cut down the current diagnosis time from nine years so that suffering and permanent damage are lessened. We need to be advocates for these patients who have felt misunderstood, isolated, and hopeless for so long. As we learn more about celiac disease, we need to continue teaching others about this misdiagnosed and misunderstood condition.

10 Page 10 RESOURCES FOR THE PATIENT WITH CELIAC DISEASE There are many resources available for the patient and medical professional wishing to learn more about Celiac Disease. These are just a few: - The Celiac Disease Foundation - The University of Chicago Celiac Disease Center - National Foundation for Celiac Awareness (NFCA) - Contains forums for patients to ask questions and discuss issues Raising Our Celiac Kids (R.O.C.K.) - Support group for families with children who have Celiac Disease REFERENCES 1. Bower, Sylvia, et. al. Celiac Disease: A Guide to Living with Gluten Intolerance. New York: Demos Medical Publishing, Bronski, Peter, and Melissa Jory. The Gluten-Free Edge. New York: The Experiment Publishing, Green, Peter, and Rory Jones. Celiac Disease: A Hidden Epidemic. New York: HarperCollins Publishers, James, Dustin and Liz Scott. The Complete Idiot s Guide to Digestive Health. New York: Penguin Group, 2010.

11 Page 11 CE Exam Gluten-Free: An Introduction to Celiac Disease MULTIPLE CHOICE 1. Celiac Disease can best be defined as: A. A disease in which the patient has a physiological reaction to sugar and must monitor blood sugar levels. B. A disease in which the patient must not eat any type of grain because it will hurt their intestines. C. A disease in which the patient must not eat anything related to or touched by gluten. D. A disease that causes overgrowth of the villi in the large intestine. 2. A patient with Celiac Disease goes out to lunch with friends from the office. Which of the following foods is probably the safest to eat? A. Peach slices in a bowl B. Garden salad with croutons C. Chocolate cake D. Crispy chicken nuggets 3. A patient arrives at your clinic with an ankle injury. While taking his medical history, you notice that some of his chronic conditions might point to the need for a Celiac Disease screen. Which of the following is not included in your list of reasons to screen for Celiac Disease? A. First degree relative has Celiac Disease B. History of chickenpox as a child C. Chronic diarrhea D. Itchy, blistering rash on knees and elbows

12 Page The skin disease associated with Celiac Disease is: A. Dermatitis Glucaformis B. Dermatitis Pancreitis C. Dermatitis Herpetiformis D. Dermatitis Ankylosis 5. What is one reason that Celiac Disease is so often misdiagnosed? A. It is undetectable. B. There are no known screens for it. C. It is a multisystem disease that mimics other diseases. D. It only affects newborn babies. 6. A patient needs to be screened for Celiac Disease. What is the first step? A. X rays are taken to determine bone age. B. MRI screen is ordered to examine the pituitary gland. C. Celiac Urinalysis screen is ordered to check hormone levels. D. Celiac Comprehensive Panel blood screen is ordered. 7. At this time, what is the gold standard for diagnosis once screens are found positive? A. Endoscopy of the small intestine B. Biopsy of the esophagus C. Colonoscopy of the large intestine D. Biopsy of the liver

13 Page Which of the following is not usually a member of the care team for the patient with Celiac Disease? A. Urologist B. Dietician C. Gastrointestinal specialist D. Support group 9. A person with Celiac Disease makes her first trip to the grocery store since her diagnosis. She is unable to remember which grains she needs to stay away from on her gluten free diet. What acronym can you give her to help her remember? A. GREEN B. RED C. BLUE D. BROWN 10. In terms of living with Celiac Disease, which of the following choices is a myth? A. Labels always need to be read for sources of gluten. B. Cross contamination is always an issue, even if the ingredients are gluten free. C. Gluten can be found in lip balms and shampoos. D. Gluten is only found in pastries, cakes, and cookies.

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