Allied Health 60 min v6

GREAT Allied Health : 

GREAT Allied Health Celiac Disease Training for Allied Health Providers

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The following information is not intended nor suited to be a replacement or substitute for professional medical treatment or for professional medical advice relative to a specific medical question or condition. The NFCA urges you to always seek the advice of your physician or medical professional with respect to your medical condition or questions. The following information is not intended to establish a doctor/patient relationship with any physician. There is no replacement for personal medical treatment and advice from your personal health care provider. NFCA and the NFCA logo are registered trademarks and the GREAT programs are owned and copyrighted by NFCA. GREAT Allied Health

NFCA Mission Statement : 

NFCA Mission Statement To be the leading organization in raising awareness of celiac disease and gluten intolerance that will facilitate research, education and early diagnosis, and improve the quality of health of children and adults affected by this autoimmune disease.

The celiac story is about real people ... : 

The celiac story is about real people ...

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These real people often encounter 9-11 years of frustrating misdiagnosis such as irritable bowel syndrome, depression or chronic fatigue before being properly diagnosed with celiac disease.

Learning Objectives : 

Learning Objectives After completing this training program, participants will be able to: Define the etiology of celiac disease and its prevalence. Explain the disorder’s manifestations, including how it may affect one’s fine and gross motor skills and neurological functioning. Name the methodologies of diagnosis. List techniques to partner successfully with the medical team to facilitate a diagnosis. Identify techniques to support the maintenance of a gluten-free diet in a healthcare setting.

Celiac Disease : 

Celiac Disease That means one can’t eat bread, right?

Etiology of Celiac Disease : 

Etiology of Celiac Disease Celiac disease is a genetic, autoimmune disorder – the only autoimmune disorder with a known trigger: gluten. Gluten is the protein in wheat, barley and rye. When a person with celiac disease ingests gluten the body reacts. People who are genetically susceptible to have celiac disease have the potential to develop the disorder. A trauma (illness, injury, hormonal change) to the body causes the autoimmune disorder to become activated and celiac disease to occur.

Etiology Celiac Disease : 

Etiology Celiac Disease The autoimmune system causes inflammation, primarily in the digestive tract. The mucosa of the small intestine become inflamed, causing swelling, damaging the villi and crypts and causing malabsorption. The damaged villi are unable to properly absorb nutrients. Overtime the person becomes malnourished. Varied and increasingly complex health problems begin.

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The only treatment for people with celiac disease is following a strict, lifelong gluten-free diet. No wheat, barley or rye, or food made with any of these ingredients, such as sauces, luncheon meats, malt, soy sauce and even beer. Forever – or until a cure is found. Gluten can also be found as an additive in some medications and toiletry products! Etiology of Celiac Disease

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People with celiac have an intolerance to gluten, not an allergy. Each person responds differently. Some people can have a severe response to even the smallest particle of gluten. The inflammation response may occur immediately or take days to develop. Sometimes the response is not observed at all, but internal damage is still occurring. Etiology of Celiac Disease

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Did You Know? Celiac affects people of all ages. Diagnosis may occur during infancy or childhood, adolescence, adulthood or during one’s senior years. The median age of diagnosis is 45-46.

History : 

History “The Coeliac Affection” was initially noted during the first century AD by a Greek physician, Aretaeus of Cappadocia. But it was Dr. Samuel Gee who, during the end of the 19th century, is credited with identifying the disease. Gee recognized that the cure for “celiac affection” would be through diet. During the 1920’s, “the banana diet” was thought to be a successful treatment for the disorder. Dr. Sidney Haas realized this after his research treating those with anorexia. Many a child subsisted on this limited diet, and evaded death in the process. Dr. W. K. Dicke, a pediatrician in the Netherlands, noted that the symptoms of the Dutch children who had celiac disease improved during the bread shortage of World War II. And then he noted their deterioration when the Allied planes dropped bread for relief. He later published research showing the correlation of wheat and rye as the trigger for celiac disease. Celiac disease is the only autoimmune disorder with a known trigger: gluten.

Celiac in the 21st Century : 

Celiac in the 21st Century 2003 prevalence study found celiac is the most common autoimmune disease, affecting 1:133¹ In 2009 researchers at the Mayo Clinic determined that the incidence of celiac increased four-fold since the 1950s² ¹ Fasano, A., et al. (2003). Prevalence of Celiac Disease in At-Risk and Not-at-Risk Groups in the United States: A Large Multicenter Study. Archives of Internal Medicine, 163, 286-292. ² Joseph A. Murray et al (2009). Increased Prevalence and Mortality in Undiagnosed Celiac Disease. Gastroenterology 137: 88-93.

Prevalence of Celiac Disease : 

Prevalence of Celiac Disease 95% of people with celiac disease remain undiagnosed or misdiagnosed.¹ That means that many people (including staff) in our healthcare system have celiac disease and have not been diagnosed. We are going to change that. ¹ National Institutes of Health. Celiac Disease Awareness Campaign, [5/23/2008]. Available at: http://celiac.nih.gov/FGAQ.aspx. Accessed December 17, 2009.

Did You Know? : 

Did You Know? Celiac disease affects 1:133 Americans Cerebral Palsy affects 1:400 Childhood Apraxia of Speech affects 1:1,000 Cystic Fybrosis affects 1:2,500 Prader-Willi Syndrome affects 1:10,000-25,000

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More people have celiac disease than have ulcerative colitis, Crohn’s disease, and cystic fibrosis combined.

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Celiac disease affects every system in the body. The autoimmune response is not limited to just the digestive system.

Did You Know? : 

Did You Know? People with celiac disease may be underweight or obese.

Gastrointestinal Manifestations of Celiac Disease : 

Gastrointestinal Manifestations of Celiac Disease Stomach aches Diarrhea Constipation Bloating Gassiness Distended belly Inflammatory bowel syndrome (IBS) Nausea Vomiting Abdominal distention Loss of appetite Mouth ulcers Canker Sores Dental enamel defects

GI Manifestations of Celiac Disease : 

GI Manifestations of Celiac Disease Untreated celiac disease can cause an aversion to eating and mimic symptoms of anorexia nervosa and bulimia nervosa. Symptoms of both conditions may interact and hamper the diagnosis of each. It is recommended that people be screened for celiac disease during the differential diagnosis for eating disorders – especially in atypical cases, or when nausea and bloating are prominent complaints.

Case Study: Anorexia Nervosa : 

Case Study: Anorexia Nervosa 35 y.o. woman* with an long history of anorexia nervosa, bulimia nervosa and depression seen for persistent weight loss despite reported control of eating disorder. BMI decreased from 21 to 16 during previous year. Mild stomach pain and diarrhea precipitated celiac disease testing. On a gluten-free diet, BMI increased to 18 before she had trouble with diet compliance. In an in-patient eating disorder clinic, patient complained that staff was not providing allowed gluten-free substitutions and would not permit her to bring in gluten-free food. Dually diagnosed, the lack of knowledge about celiac disease by her healthcare providers compromised the patient’s health, and her trust of clinicians. * Leffler, DA et al, The interaction between eating disorders and celiac disease: an exploration of 10 cases. European Journal of Gastroenterology Hepatology, 2007 19:251-255.

Did You Know? : 

Did You Know? Restricting food, as required with the treatment of celiac disease, may lead to characteristics of an eating disorder.

50% of newly diagnosed celiacs have NO gastrointestinal symptoms at all! : 

50% of newly diagnosed celiacs have NO gastrointestinal symptoms at all! Did You Know?

Malnutrition Manifestations of Celiac Disease : 

Malnutrition Manifestations of Celiac Disease Failure to thrive Short stature Delayed puberty Fatigue, including chronic fatigue syndrome Arthritis Bone and joint pain (with or without swelling) Osteopenia and osteoporosis Alopecia Brittle hair Pale skin

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66% of people with celiac disease had osteopenia or osteoporosis at diagnosis.¹² Bone mineral density (BMD) testing is recommended for all people diagnosed with celiac disease - not just the elderly. Following a gluten-free diet improves the absorption of calcium in the intestines, and a subsequent rapid increase in BMD. Children experience complete recovery of bone mineralization within 1 year if diagnosis and treatment are made before puberty.² Improved BMD in adults occurs after 1 year of gluten-free diet, including in post-menopausal women.² Did You Know? ¹ Sategna-Guidetti, C., Grosso, S.B.,, Grosso, S., Mengozzi, G., Aimo, G., Zaccaria, T., DiStefano, M., Isaia, G.C. (2000). The effects of 1-year gluten withdrawal on bone mass, bone metabolism and nutritional status in newly-diagnosed adult coeliac disease patients. Alimentary Pharmacology & Therapeutics 14(1). 35-43. ² Capriles, V.D., Martini, L.A., Areas, J.A.G. (2009). Metabolic osteopathy in celiac disease: importance of a gluten-free diet. Nutrition Reviews 67(10) 1-8.

Chronic Fatigue Syndrome : 

Chronic Fatigue Syndrome Fatigue is a feature of celiac disease and it may be the only symptom of the disorder. People with celiac disease test higher for chronic fatigue syndrome (CFS) at diagnosis compared to controls. There is a strong relationship between CFS and depression, though other organic factors may play a role in the development of both conditions.

Did You Know?Chronic Fatigue Syndrome : 

Did You Know?Chronic Fatigue Syndrome People with CFS who test positive for celiac disease have increased physical activity and experience a substantial improvement in their quality of life when a gluten-free diet is implemented. Screening for celiac disease should be conducted for all cases of CFS. It is also recommended that testing for celiac disease be ordered for people with general, non-specific symptoms.

Case Study: Failure to Thrive : 

Case Study: Failure to Thrive 11 month old boy, presented with poor weight gain during the previous 4-5 months, and weight loss during the previous two weeks. No physical symptoms, including normal bowel movements. Full-term, vaginal delivery, uncomplicated pregnancy Breast-fed until 7 months, weaned to cow’s milk formula. Solid foods introduced at 5 months. At 3 months he had bronchiolitis for one week. At 8 months he had diarrhea for four days, which subsequently resolved. At presentation child had no physical symptoms, including normal bowel movements. He had normal urine and stool examination, normal renal, liver and thyroid function and normal calcium. His weight began to increase after a positive test for celiac disease and the institution of a gluten-free diet. He was just under one year of age. * Bergman, P., Graham, J. An Approach to Failure to Thrive. Australian Family Physician. 2005, 34, 9.

Did You Know? : 

Ten percent of people with celiac disease have neurological manifestations. People with celiac disease are more likely to develop neurological disorders (51%) compared to controls (20%) Did You Know? ¹ Zelnik, N., Pacht, A., Obeid, R., Lerner, A. (2004). Range of neurologic disorders in patients with celiac disease. Pediatrics 113(6). 1672-1676.

Neurological Manifestations : 

Neurological Manifestations Developmental delays Hypotonia ADHD Learning disorders and poor school performance Behavioral disturbances Headaches or migraines Seizure disorders and epilepsy Ataxia, including cerebellar ataxia and myoclonic ataxia Progressive leukoencephalopathy Chronic neuropathy Peripheral neuropathy (tingling in hands or feet)

Case Study: Hypotonia : 

Case Study: Hypotonia 13 month old girl presented with flaccid paraparesis after upper respiratory infection. Upon examination child was pale and listless. She had a distended abdomen, diffuse weakness, hypotonia and reduced deep tendon reflexes. Her weight was below the 5th percentile with height and head circumference at the 50th percentile. Previous history includes full-term gestation with normal neurological development Duodenal biopsy revealed villous atrophy and celiac disease confirmed. Two weeks on gluten-free diet child’s strength, tone and reflexes returned to normal. She sat independently and pulled herself to standing. After two months her weight was at the 25th % and at seven months it was at the 50th percentile. Diagnosing celiac disease and promptly instituting a gluten-free diet is critical for affected children to catch-up to normal development. * Loma-Sanner, I; Kang, EY; Sepehrdad, S; Goldstein, SL; Herman, MS; Accardo PJ; Green PHR; Roseman, B. (2005). A Floppy Child With Failure to Thrive. The Lancet, 366. 176.

Did You Know? Hypotonia : 

The gluten-free diet is therapeutically beneficial to those with infantile and childhood hypotonia. Rapid diagnosis and initiation of the gluten-free diet is needed for catch-up growth in affected children.¹² Did You Know? Hypotonia ¹ Loma-Sanner, I; Kang, EY; Sepehrdad, S; Goldstein, SL; Herman, MS; Accardo PJ; Green PHR; Roseman, B. (2005). A Floppy Child With Failure to Thrive. The Lancet, 366. 176. ² Zelnik, N., Pacht, A., Obeid, R., Lerner, A. (2004). Range of neurologic disorders in patients with celiac disease. Pediatrics 113(6). 1672-1676.

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Celiac disease must be ruled out in any patient with epilepsy and occipital cerebral calcifications. Early diagnosis and implementation of the gluten-free diet affect how the syndrome progresses. Did You Know? Epilepsy

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More than one third of people with idiopathic ataxia have celiac disease¹. Gluten-related ataxia mostly affects the lower limbs. Anyone with ataxia of unknown cause should be tested for celiac disease. If GI manifestations are also present, then there is a greater likelihood of improvement of neurological symptoms on a gluten-free diet. ¹ Hadjivassiliou, M., et al (2003). Dietary treatment of gluten ataxia. Journal of Neurological Neurosurgery Psychiatry 74. 1221-1224. Did You Know? Ataxia

Did You Know?Ataxia : 

Myoclonic (contraction of a specific muscle or group of muscles) ataxia’s differential diagnosis should include celiac disease. Did You Know?Ataxia

Case Study: Copper Deficiency : 

Case Study: Copper Deficiency A 69-year-old woman with a 5-year history of progressive gait unsteadiness and weight loss. No other gastrointestinal symptoms. Neurologic examination and electrodiagnostic testing found: Sensory ataxia Myeloneuropathy Decreased serum copper levels Screening and subsequent biopsies positive for celiac. The patient was diagnosed with copper deficiency myeloneuropathy due to celiac disease. Implementation of a gluten-free diet and copper supplementation resulted in significant clinical improvement, including improvement on electrodiagnostic testing. Celiac disease should be considered in patients found to have copper deficiency. Ataxia associated with celiac disease may be due to copper deficiency myeloneuropathy. * Goodman, B.P., Mistry, D.H., Pasha, S.F., Bosch, P.E. (2009). Copper deficiency Myeloneuropathy due to occult celiac disease. The Neurologist 15(6). 355-356.

Did You Know?Dementia : 

Doctors at the Mayo Clinic are studying patients that had an onset of cognitive impairment coinciding with gastrointestinal symptoms and biopsy confirmed celiac disease. The impairments include amnesia, acalculia, confusion and personality changes, among others. Did You Know?Dementia

Did You Know?ADHD : 

There is a disproportionate amount of ADHD symptomatology among people with untreated celiac disease. Following a gluten-free diet results in a significant improvement in behavior and functioning for this population. Did You Know?ADHD

More Manifestations : 

More Manifestations Irritability Depression Anxiety Schizophrenia Dementia Anemia and Ecchymosis (easy bruising) Folate and vitamins K and B12 deficiency Infertility, miscarriages, fetal defects And more…

Manifestations Experienced by Older People* : 

Manifestations Experienced by Older People* Anemia Diarrhea Malabsorption Weight loss Unexplained oral or dermatologic lesions Elevated liver enzymes Pancreatic insufficiency with unknown cause Non-specific complaints Osteopenia and osteoporosis Any symptom may affect the elderly, but these manifestations should receive particular attention.

Related Disorderspeople with these disorders have a higher likelihood of also having celiac : 

Related Disorderspeople with these disorders have a higher likelihood of also having celiac Down syndrome Turner syndrome Sjorgen’s syndrome Lupus Williams syndrome Type 1 Diabetes Dermatitis Herpetiformis Some IgA deficiencies Autoimmune thyroiditis Hashimotos’s thyroiditis Graves disease Addison’s disease Hypospleenism

Long-term Complications of Untreated Celiac Disease : 

Long-term Complications of Untreated Celiac Disease GI malignancies Non-Hodgkin lymphoma Conditions associated with chronic malnutrition Sense of not feeling well And more…

Did You Know?Mortality : 

Once a person with celiac disease follows a gluten-free diet the risks of complications are mediated and their rate of medical problems is similar to the non-celiac population. Did You Know?Mortality

Diagnosis : 

Diagnosis Patient MUST be eating gluten for 4-6 weeks prior to testing. Serology: antibody measurements of the blood Small bowel endoscopy and biopsies Resolution of symptoms on a strict gluten-free diet

What Does the Gene Mean? : 

What Does the Gene Mean? Up to one third of the U.S. population carries the gene for celiac disease. This means that people with the genes DQ2 or DQ8 may develop celiac disease sometime in their lifetime, but they are not destined to do so.

Genetic Screening : 

Genetic Screening Genetic screening is performed to Rule Out celiac disease if diagnostic testing is not conclusive: If the gene is not carried then the person does not have celiac.* Celiac genetic assessment: HLA DQ2 and DQ8. Person does not need to be eating gluten prior to testing. * One percent of people with celiac do not carry the DQ2 or DQ8 genes. For this population the genetic screening would inaccurately rule celiac out.

Did You Know? : 

Did You Know? The genetic test is beneficial in several scenarios: For a child under the age of five whose serology is unreliable; celiac can be ruled out before embarking on an invasive endoscopy. For an adult who chooses not to have an endoscopy due to a lack of medical insurance or other reason. The presence of the DQ2 or DQ8 gene is another marker to show the increased likelihood of the individual having celiac disease. A person who tests negative by serology but continues to have symptoms without cause. The gene test will rule celiac out before proceeding with an endoscopy. First degree or second degree relatives of a person with celiac disease may choose to rule out the possibility of developing celiac disease by having the genetic test.

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Communicating with the Medical Team

Communicating with the Medical Team : 

Communicating with the Medical Team Observation and recognition of symptoms are critical for proper diagnosis. The allied health provider may recognize symptom patterns before the physicians recognize them. When presenting suspected undiagnosed celiac disease to the medical team: Concisely describe the observations. Keep it fact-based and use medical terms. Message should be action-oriented and persuasive. Actively listen to response. Assert concerns if needed

Did You Know? : 

Did You Know? First degree relatives of people with celiac disease have a 1:22 chance of also having the disorder. Consider patients’ family history to help with diagnosis. Remember that family members may have had symptoms of celiac disease that were not recognized.

Treatment : 

Treatment Health depends on the proper use of this prescription. The gluten-free diet is the treatment for celiac disease.

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The only treatment for people with celiac disease is following a strict, lifelong gluten-free diet. No wheat, barley or rye, or food made with any of these ingredients, including sauces, luncheon meats, malt, soy sauce and even beer. Forever – or until a cure is found. Gluten can also be found as an additive in some medications and toiletry products! The Gluten-free Diet

Treatment : 

Treatment Once a gluten-free diet is initiated, most people with celiac disease begin to feel better within a few days. Sometimes it takes a few months. Internally, the damage to the gut may take six months to heal in children and two years in adults. If someone newly diagnosed continues to have symptoms after going on a gluten-free diet then a review of the gluten-free diet should be undertaken to look for accidental ingestion. For a very few with celiac disease, the symptoms don’t resolve at all. This is called “Refractory Celiac.” Researchers are pursuing a therapeutic treatment for this population.

Treatment : 

Treatment A life-long gluten-free diet is not easy to maintain. Refer patient and family to a dietitian. Support groups offer ongoing support for successful maintenance of the gluten-free diet, as well as information about label reading of food and internet resources. Some people require counseling services as an additional support to manage the challenges experienced with the gluten-free diet.

Did You Know? : 

Did You Know? Patients who participate in support groups are significantly more likely to succeed at managing the gluten-free diet and to have a lower incidence of depression.

Treatment Geriatrics : 

Older people’s symptoms DO resolve when they are on a gluten-free diet. When an improvement of symptoms is noted, the elderly will be committed to following the restricted diet. Additional help with label-reading and understanding cross contamination may be needed. Financial issues due to the added expense of gluten-free food challenge their compliance. Support from family and friends, and a support group, is critical. Treatment Geriatrics

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Healthcare Facility Management   1. Establish an intradepartmental policy for handling patients who require a gluten-free diet. 2. If a patient requests a gluten-free diet, the order should be sent directly to the Food & Nutrition Department for proper handling. 3. Dietitian should review food orders to ensure gluten-free items have been selected and are delivered.

The Gluten-free Patient : 

The Gluten-free Patient Implementing systems will help prevent accidental gluten exposure to a patient with celiac disease in a healthcare setting. ID patient with a bracelet (similar to an allergy alert.) Signage on the outside of the patient’s door. Use the electronic medical record (EMR) for medication alerts. Use the food service’s electronic system to identify celiac disease and gluten intolerance to facilitate safe food and beverage ordering.

Food Service : 

Food Service Food must be prepared using safe gluten-free practices. Cross-contamination: if a tiny crumb touches a gluten-free meal it is no longer considered gluten-free, and a new gluten-free meal must be prepared. Double-check that the snack or meal provided for patient is indeed gluten-free.

Food Service: Oats : 

Food Service: Oats Most commercially available oats are cross-contaminated with gluten during harvest or manufacturing. There are dedicated gluten-free oat manufacturers available. 5% of people with celiac are sensitive to all oats – even gluten-free oats. In a healthcare setting, a physician’s order for oats is required for patients with celiac disease.

Food Allergen Labeling Act of 2004 : 

Food Allergen Labeling Act of 2004 Wheat, as one of the top eight food allergens, must now be listed on the ingredient list of commercially produced foods. Barley and rye may be a hidden ingredient, not listed on the food label. The FDA’s definition of “gluten-free” is pending and is expected soon.

Did You Know? : 

Did You Know? Hand washing with soap and water is the best way to remove gluten. Hand wipes work in a pinch. Some soaps may contain gluten. Anti-bacterial Hand Sanitizers do NOT remove gluten particles.

Risk Areas in Healthcare Facilities : 

Risk Areas in Healthcare Facilities Food preparation areas. Snacks from the patient care unit. Employee breaks/quick treats at the nursesstation (stray crumbs on staff’s hands). Meals. Medication. Personal care products.

Risk Areas in Healthcare Facilities : 

Risk Areas in Healthcare Facilities Pediatrics and Rehabilitation Facilities Play-Doh Paints and glues Food used in crafts (i.e. stringing pasta or Cheerios) Paper Maché Manipulatives Cooking Classes

Risk Areas in Healthcare Facilities : 

Risk Areas in Healthcare Facilities Nursing and Rehab Centers Field Trips: Expect the Unexpected Unfamiliar territory so environment is unknown. Bakery: flour in the air. Restaurants: some are equipped to provide gluten free meals. Many are not. Plan ahead and make arrangements. Bring snacks or treats for patients with celiac.

Medication : 

Medication The Food Allergen Labeling Consumer Protection Act of 2004 requires packaged food labels to name all ingredients containing wheat and other common allergens. No similar requirement exists for medication labels. Common excipients in medication include cornstarch, potato starch, tapioca starch, wheat starch (gluten), modified starch, pre-gelatinized starch and pre-gelatinized modified starch.

Medication: Identifying Gluten : 

Medication: Identifying Gluten Sometimes the source of the starch is identified on the medication insert. If it is not, the only way to determine if the medication is gluten-free is to call the manufacturer. Manufacturers sometimes need to research the source of the starch. As a result, it can take several hours or even days to determine the source of starch. If medication is needed after business hours, verification of its gluten-free status may not occur until the next business day.

Best Practices : 

Best Practices Storage of gluten-free crackers, snacks and beverages on the patient care unit. Keep gluten-free food items separate and well marked for easy identification. Consider storing gluten-free food product on top shelves so that crumbs from gluten-containing food don’t fall into it.

What is it like for people with food restrictions? : 

What is it like for people with food restrictions? Empathize and Empower

Adjustments : 

Adjustments Grief: There is a significant loss in the life of the person following a gluten-free diet, and many familiar patterns will forever be altered (social, emotional, nutritional, etc.). It is not just about changing the way they eat. Education: Each person must find a solution that works for him or her. Personality, experience, and available resources influence each individual’s approach to problem solving. The higher one’s Socio Economic Status, the more likely they will be successful adapting. Plan: Someone on a gluten-free diet needs to think about their schedules. One cannot rely upon the availability of gluten-free food. Individuals on a gluten-free diet must always be prepared to supply their own meal.

Did You Know? Mortality : 

Children diagnosed with celiac disease have a significantly higher mortality rate than those who are diagnosed as adults, due to high-risk behavior, substance abuse and suicide. This behavioral change is attributed to living with a chronic disease and its treatment. Did You Know? Mortality

Depression : 

Depression Many patients diagnosed with celiac disease experience depression due to: Decrease in social invitations or hesitancy to accept due to eating restrictions. Limited ability to eat out or on impulse. Feeling that they are missing out. Chronic disease with diet restriction. Social challenges. Extra time required managing diet.

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The rate of depression for the person with celiac disease is similar to the rate of depression in people with diabetes. Managing a chronic disease that requires a restricted diet is challenging. Did You Know?

Anxiety : 

Anxiety Many patients diagnosed with celiac disease experience anxiety due to: Fear of exposure to gluten. Fear of illness following exposure. Fear of not having safe food to eat. Others’ projected anxiety. Being different. Long-term health risks. An increase in food costs.

Religious Concerns : 

Religious Concerns For some, following a gluten-free diet impacts their ability to practice their religion in a manner that they are accustomed or even expected to, thus resulting in quality of life problems.

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Girl told: No wheat, then no sacrament Source:  David O'Reilly INQUIRER STAFF WRITER August 13, 2004 Page B01 The Diocese of Trenton has ruled that the First Communion of a girl with a digestive disorder is invalid because the host she received was not made of wheat. Her mother is calling on the Vatican to reverse its ban on wheatless Communion wafers … Mother is rebuffed on rice Communion wafer Source: John Curran ASSOCIATED PRESS, May 18, 2005, page B03 The mother of a Monmouth County girl whose first Holy Communion was declared invalid met yesterday with Trenton Bishop John M. Smith but gained no ground in her quest to have the Roman Catholic Church relax its requirements for Communion wafers. Liz Pelly-Waldman, 31, of Brielle, had a one-hour private audience with Smith, asking that the diocese help her persuade the Vatican to change its rules so that 9-year-old Haley Waldman - who cannot consume wheat because of celiac sprue disease … Religious Concerns

Religious Concerns: Christianity : 

Religious Concerns: Christianity Communion: The host is made from wheat (gluten.) There are commercially prepared gluten-free communion wafers. The Catholic church requires the host to be made from wheat. The Benedictine Sisters’ wafer (mentioned in the Resources) is acceptable, but some sensitive people react to it as there is minimal gluten. In Catholicism, observers need only receive one species: body/bread or blood/wine. Challis/Wine: A person with celiac should not share the challis with the priest because a piece of the host (bread) is typically placed into it. Larger churches often have a pitcher of wine and use individual cups.

Religious Concerns: Judaism : 

Religious Concerns: Judaism Oat matzo can be purchased for the person who is well controlled and able to tolerate oats. Other Jewish food and Challah can be purchased or prepared. See Resources for detailed information.

Did You Know? : 

Did You Know? Gluten-free foods are more expensive and not as readily available as the comparable foods that do contain gluten. The marketplace has recognized the increased prevalence and subsequent financial benefits from gluten-free foods. As a result the diversity of products and their availability has increased significantly. Gluten-free food is available in many health food stores and some mainstream markets across the country.

Support : 

Support Refer to a dietitian. Refer to a support group. Bone density testing Assessment of nutritional deficiencies Recommend that patient’s immediate family be tested, even in the absence of symptoms. Consider counseling services.

Empower the Patient : 

Empower the Patient Geriatric patients often require additional support. One-on-one explanation of the diet. Change is challenging. Financing the diet on a fixed income: gluten-free food is expensive. The belief that “Just a little bit” won’t hurt. Yes it will!!!

Key Points to Remember : 

Key Points to Remember People with celiac disease are unable to digest gluten, the protein in wheat, barley and rye. Celiac disease may be an underlying cause for neurological impairment. Partner with medical team: share observed risk factors. Wash hands before and after risk activities. Refer patients to dietitian and support group.

Shared Goal : 

Shared Goal Increasing the diagnosis of people with celiac disease.Improving the care of patients with celiac disease.

Thank-you! : 

Thank-you! National Foundation for Celiac Awareness Phone: 215-325-1306 PO Box 544, Ambler, PA 19002 Website: www.CeliacCentral.org