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2 Docs Talk: The podcast about healthcare, the science of medicine and everything in between.
Most people probably know someone who has had thyroid disease of some sort, most commonly hypothyroidism - the term low thyroid hormone. But there has been a significant rise in diagnosed thyroid disease in the past couple of decades due to screening. These diagnoses include problems with thyroid hormone as well as thyroid cancers. It's easy to get excited about diagnosing more disease - you catch it earlier and help people prevent the consequences of the disease. Or do you? Today we are going to talk about screening asymptomatic patients for thyroid disease. We're also going to address that slipppery category of "subclinical" thyroid disease. Resources British Medical Journal on Increased Diagnosis of Thyroid Cancer Thyroid Cancer in Korea
Nadine spent 17 years working as a nurse in the ER. She holds a membership in the Emergency Nurses Association, as well as a Certified Emergency Nurse certification. During the course of her career, Nadine obtained ACLS, PALS, NALS, ENPC and TNCC certifications, honing her skills in advanced cardiac life support, neonatal advanced life support, pediatric advanced life support, and trauma. Despite this impressive background and experience, she had never been educated about celiac disease, and didn’t know what to look for until she was diagnosed herself. Nurses are in a unique position to recognize potential celiac patients and act appropriately. Though most nurses don’t have the authority to diagnose, they do have an obligation to act as patient advocates. Because celiac disease is the most underdiagnosed and misdiagnosed autoimmune disease in the world, it is important that nurses get educated about the fundamentals of celiac disease, the wide array of symptoms an undiagnosed patient may present, and how to keep celiac patients safe in and out of the hospital. Today on the podcast, the Gluten Free RN addresses nurses, explaining how celiac disease damages the GI tract, the consequences of a ravaged immune system, and the neurological nature of the disease. She also reviews the genes that indicate a predisposition to celiac disease, the best available tests for gluten sensitivity, and the need for a worldwide mass screening. This is a must-listen for medical professionals, offering an overview of the most current celiac studies and an explanation of how to approach doing research on your own. Celiac disease is on the rise and it doesn’t discriminate, so it is crucial that the nursing community get educated – STAT. What’s Discussed: Why nurses need to employ a high index of suspicion regarding celiac disease Most undiagnosed and misdiagnosed autoimmune disease in world The lack of training around celiac disease in the medical community Nadine was nurse for 17 years Didn’t know symptoms of celiac disease Diagnosed ‘by accident’ The celiac symptoms Nadine thought to be ‘normal’ Canker sores Intermittent constipation, diarrhea Eczema on hands Difficult time gaining weight Whole family had gas What nurses need to know about celiac disease What it is, what it entails Symptoms may present with How to keep patients safe (in and out of hospital) How to request testing How to interpret lab results How long it takes to receive celiac diagnosis in US 9-15 years The restrictions of being a nurse Can’t diagnose (can recognize, treat appropriately) Can’t perform surgery Can’t prescribe meds, take patient off medication Nadine’s experience leading up to her celiac diagnosis Nadine’s celiac diagnosis Dermatologist diagnosed Blood test, skin biopsy negative HLA-DQ2.5 gene carrier (super-celiac category) Why a negative blood test, skin biopsy doesn’t rule out celiac disease Nadine’s current health Why Nadine stopped working as an ER nurse Celiac diagnosis was life-changing Started own businesses RN On Call, Inc The Gluten Free RN Celiac Nurse Consulting The increased prevalence of mortality in undiagnosed celiac patients Undiagnosed celiac disease associated with 4-fold increased risk of death (45 years of follow-up) Prevalence of undiagnosed celiac disease has increased dramatically in US over last 50 years The grains that contain gluten Wheat Barley Rye Oats (cross-contamination) The products that may contain gluten Medication Food Personal care products The search terms to use when doing celiac research Gluten-related disorders Both spellings (celiac, coeliac) Why celiac disease is primarily a neurological disorder Involves enteric nervous system (in intestines) Vagus nerve (superhighway of information from intestines to brain) Why celiac disease is not an allergy Allergy is IgE-mediated antibody response Celiac tends to be IgA, IgG-mediated antibody responses The genes that indicate a predisposition to celiac disease HLA-DQ2 HLA-DQ8 Why Nadine advocates for a world-wide mass celiac screening The relationship between celiac disease and infertility People with infertility issues, difficulty maintaining pregnancy should be tested The chronic nature of celiac disease Never goes away Gluten is neurotoxin Must be 100% gluten-free for life How gluten exposure presents for Nadine Blisters in mouth within 10 minutes How gluten can cause damage along entire length of GI tract 28 to 32 feet in length Person-to-person variability How damage to GI tract presents Canker sores Difficulty swallowing, dysphasia GERD Eosinophilic esophagitis Gas, bloating Diarrhea constipation Crohn’s disease Atypical diseases Idiopathic diseases Ulcerative colitis Diverticulitis Diverticulosis Rectal cancer Bowel cancer Hemorrhoids How constipation can be a neurological issue Gluten as neurotoxin can paralyze nervous system, intestines Stool cannot get pushed through Can result in colon cancer, megacolon Disorders that may be caused by undiagnosed celiac disease Diabetes Heart problems Sudden cardiac deaths Strokes Bowel, rectal cancer (recent increase in young people) Why a biopsy is no longer considered the gold standard of celiac testing Positive anti-tissue transglutaminase and positive EMA indicates damage to intestines Endoscopist should take six to 15 samples in duodenum, jejunum (damage can be patchy) The stages of intestinal damage caused by celiac disease Marsh 1 – microvilli destroyed Marsh 2, 3 – villi themselves fall over, blunt or atrophy Marsh 4 – looks like hot, inflamed sponge and immune system compromised The consequences of a damaged immune system Hypo-responsive (doesn’t respond) Hyper-responsive (reacts to everything) The importance of including a total IgA and IgG in the celiac antibody panel Ensure patient is not IgA deficient How the US has gone backwards in the last 70 years Times article from 1950 declares ‘cures certain in 90% of cases’ and ‘deaths rare’ Celiac disease has gone unrecognized since then The testing for celiac disease Celiac antibody test (baseline) Small intestinal biopsy Nutritional panel (D3, B6, B12, magnesium RBC, zinc, ferritin) Follow-up to track healing, ability to absorb nutrients The difficulty with the celiac antibody test 70% false negative The best available celiac testing EnteroLab Gluten Sensitivity Stool Test Cyrex Laboratories Array 3 Factors that might interfere with accurate celiac testing IgA deficiency Benicar (blood pressure med) known to cause villous atrophy in absence of celiac disease Lab-to-lab variability Only tests for anti-tissue transglutaminase 2 How to carry out a clinical trial for celiac disease or gluten sensitivity Adopt gluten-, dairy-free diet for at least three months It takes six months to a year for intestines to heal Recommended for patients with genetic predisposition, regardless of negative blood test The Paleo diet Nadine suggests for celiac and gluten-sensitive patients Whole food Meat, fish and eggs Nuts and seeds Fruits and vegetables The findings of a celiac study published in the Journal of Insurance Medicine Atypical, non-diarrheal presentations now most frequent Celiac disease is grossly underdiagnosed in US Average delay in diagnosis for adult patients ranges from four to 11 years Diagnosis and treatment with gluten-free diet leads to improved quality of life Medical costs in celiac cohort were 31% lower over three-year period Why celiac disease should be on every primary care physician’s differential diagnosis The rise of celiac disease 1:501 in 1974 1:219 in 1989 1:100 is current estimate Doubles every 15 years (according to Mayo Clinic) Why Celiac disease is a worldwide issue Affects every ethnicity Frequency of tTGA in Mexico City study was 1:37 Increasing diagnoses in North Africa, Middle East and Northern India How celiac disease can lead to obesity Patient cannot absorb nutrients (malnourished) Body responds by storing fat for cheap energy How the risk of cancer increases exponentially in undiagnosed celiac patients Why nurses must be patient advocates Nadine’s advice around research and celiac disease for nurses Not taught in nursing programs Do your own research to keep up with current info Resources: Snarky Nurses on Instagram National Nurses in Business Association “Increased Prevalence and Mortality in Undiagnosed Celiac Disease” in Gastroenterology PubMed Cyrex Laboratories EnteroLab New York Times Article, May 1950 “Economic Benefits of Increased Diagnosis of Celiac Disease in a National Managed Care Population in the United States” in the Journal of Insurance Medicine “Celiac Disease Could be a Frequent Disease in Mexico: Prevalence of Tissue Transglutaminase Antibody in Healthy Blood Donors” in the Journal of Clinical Gastroenterology “Celiac Disease in African-Americans” in Digestive Diseases and Sciences “Coeliac Disease” in The Lancet Connect with Nadine: Instagram Facebook Contact via Email ‘Your Skin on Gluten’ on YouTube Melodies of the Danube Gluten-Free Cruise with Nadine Books by Nadine: Dough Nation: A Nurse's Memoir of Celiac Disease from Missed Diagnosis to Food and Health Activism
Celiac disease is grossly underdiagnosed in the United States in large part because the medical community is operating on outdated information about the condition. And despite the recommendations of the National Institute of Health back in 2004, we have yet to implement a mass screening for celiac disease, and health care providers remain alarmingly uninformed. The Gluten Free RN is taking steps to remedy the situation by sharing the basics for medical professionals. Today she covers the WHO’s definition of celiac disease, how our understanding of the condition has change over time, and some common misconceptions about celiac disease. She also explains the top symptoms, recommended testing for celiac disease and gluten sensitivity, and the neurological nature of the disorder. Listen in to learn what health care providers need to know about this undiagnosed epidemic, the complex web of health issues that may result from undiagnosed celiac disease, and why it is important to have a high index of suspicion and include celiac testing on every differential diagnosis. Help your patients go gluten-free and collect something other than autoimmune disorders! What’s Discussed: The standard of care in the US Providers should have diagnosed at least 1% of patients with celiac disease Undiagnosed for 70 years, must overcome to prevent further pain and suffering The goals of Nadine’s consulting business Works with facilities to protect celiac patients Ensure compliance with ADA How the media portrays the gluten-free lifestyle Dissuades people from adopting diet (program sponsors influence messaging) Negative headlines How our understanding of celiac disease has changed over time The recommendations of the 2004 NIH consensus meeting regarding celiac disease Mass screening (meets WHO criteria) Education for health care providers The World Health Organization criteria for mass screening Early clinical detection essential Condition is common Screening tests highly sensitive and specific Effective treatment available Untreated condition leads to complications The autoimmune disorders associated with undiagnosed celiac disease MS Type 1 diabetes Lupus Rheumatoid arthritis Sjögren’s Vitiligo The WHO definition of celiac disease Characterized by hypersensitivity to gluten Prevalence currently estimated at 1:1,000 worldwide Screening trials suggest prevalence of 1:100 Results in weight loss, diarrhea, nutritional deficiencies Caused by villous atrophy May present as extraintestinal manifestations or remain clinically silent Why celiac disease can’t be ruled out with a single test Can be triggered at any point HLA-DQ2 and HLA-DQ8 genes indicate genetic predisposition Misconceptions about celiac disease in the US medical community Thought to be digestive disorder, but really neurological Can present with seizures, numbness, constipation, balance issues, celiac cerebellar ataxia How skin issues are a reflection of what is going on internally Epithelial skin is same tissue as inside How damage to the small intestine leads to multiple health issues Increased permeability of intestinal wall Leaky blood brain barrier Leaky blood vessels Leaky lungs and skin The classic symptoms of celiac disease Chronic diarrhea Malabsorption Extreme weight loss Malnutrition What celiac disease looks like in children Diarrhea, constipation General abdominal pain Failure to thrive Falling off growth chart Short stature Learning disabilities ADD, ADHD, ODD Autism Skin issues (eczema, cirrhosis, acne) Delayed puberty Dental problems Anorexia, obesity Bed wetting The prevalence of celiac disease in older adults 30% of people diagnosed with celiac disease are over 60 Potential signs of celiac disease in the aging population Dementia Alzheimer’s Vision, hearing loss Urinary problems Cancer diagnosis (especially bowel cancer) Ataxia Arthritis Hair loss Fatigue Osteoporosis Anemia The elements that get into your blood stream as a result of villous atrophy Toxins Heavy metals Undigested food particles Yeast, fungus Parasites, other harmful bacteria Top symptoms of celiac disease Chronic anemia Fatigue Muscle, joint pain Depression, irritability Thyroid disorders Infertility issues GI problems (from mouth to rectum) Migraine headaches Psychiatric disorders Seizures Dermatitis herpetiformis Down, Turner or Williams syndrome Cardiomyopathy The effects of gluten on the brain Anger Depression, anxiety Learning disabilities Lethargy Insomnia Brain fog Schizophrenia Dyslexia Populations affected by celiac disease Any age, race, gender 3 million people all over the world Study of healthy blood donors in Mexico found unexpectedly high prevalence of tTGA positivity Now recognized as common disease among Middle Eastern and North African populations 1:7 Americans suffer from non-celiac gluten sensitivity (43 million people) The findings of an economic study by Columbia University Non-diarrheal presentations now most frequent Celiac disease grossly underdiagnosed in US Average delay in diagnosis is 4-11 years for adults in North America Significant improvement in quality of life when patients diagnosed and treated appropriately The importance of ensuring that medications are gluten-free Nadine’s recommendations around nutrition for celiac patients Gluten- and dairy-free Ideally Paleo Super-good high fat Things to consider re: the results of a celiac panel A positive test guarantees intestinal damage Include total IgA and IgG 70% produce a false negative Additional tests that offer valuable information Fecal fat score (ask for #, over 300 indicates malabsorption) Complete blood count Comprehensive metabolic panel Vitamin D3 level (below 40 ng/ml is critically low) Vitamins A, E & K levels Vitamin B6 & B12 levels MTHFR gene test Magnesium RBC test Zinc level Iodine level B9/Folate level Ferritin level Iron level Thyroid panel Bone density test Lipid panel ANA test (autoimmune issues) ESR test CRP test Surprising facts around celiac disease contrary to conventional wisdom Only 15% of celiac patients have chronic diarrhea 39% of celiac patients are overweight Shampoos, cosmetics and airborne gluten affect patients with gluten intolerance and celiac disease Super-good high fat diet is essential for celiac patients Resources: NIH Consensus Statement “Where Have All the American Celiacs Gone?” in Acta Pediatrica Montana Gluten Free “Economic Benefits of Increased Diagnosis of Celiac Disease in a National Managed Care Population in the United States” in the Journal of Insurance Medicine “Celiac Disease Could be a Frequent Disease in Mexico: Prevalence of Tissue Transglutaminase Antibody in Healthy Blood Donors” in the Journal of Clinical Gastroenterology “Celiac Disease in Middle Eastern and North African Countries: A New Burden? in the World Journal of Gastroenterology Recommended Labs CDC 2013 Report Antibiotic Resistance Threats Cyrex Laboratories LabCorps Glutenpro EnteroLab Primal Docs Connect with Nadine: Instagram Facebook Contact via Email ‘Your Skin on Gluten’ on YouTube Melodies of the Danube Gluten-Free Cruise with Nadine Books by Nadine: Dough Nation: A Nurse's Memoir of Celiac Disease from Missed Diagnosis to Food and Health Activism
2 Docs Talk: The podcast about healthcare, the science of medicine and everything in between.
Most people probably know someone who has had thyroid disease of some sort, most commonly hypothyroidism - the term low thyroid hormone. But there has been a significant rise in diagnosed thyroid disease in the past couple of decades due to screening. These diagnoses include problems with thyroid hormone as well as thyroid cancers. It's easy to get excited about diagnosing more disease - you catch it earlier and help people prevent the consequences of the disease. Or do you? Today we are going to talk about screening asymptomatic patients for thyroid disease. We're also going to address that slipppery category of "subclinical" thyroid disease. Resources British Medical Journal on Increased Diagnosis of Thyroid Cancer Thyroid Cancer in Korea
In Italy, it takes only two to three weeks to get diagnosed with celiac disease. In the United States, however, it typically takes nine to 15 years. Why is there such a huge discrepancy? And what are the legal ramifications for practitioners who overlook celiac disease and non-celiac gluten sensitivity, causing patients unnecessary pain and suffering? On this episode, Nadine explores the legal issues surrounding celiac disease as well as the potential reasons for delayed diagnosis in the US. She also explains the differences between universal healthcare and the for-profit system and how each appears to influence celiac diagnosis. Listen and learn what medical practitioners need to know about celiac disease and gluten sensitivity in order to avoid being sued for malpractice, the value of standardization in celiac testing and follow-up care, and how you can get involved in advocating for universal coverage. What’s Discussed: How the US health insurance system works Usually purchased through employer Loss of job often means loss of coverage ACA provides coverage for many who were uninsured For-profit system Why Nadine is an advocate for a single-payer system People treated in ER with or without insurance (we pay regardless) US healthcare is very expensive, yet outcomes poor Celiac disease diagnoses around the world Italy: 2-3 weeks; standardized follow-up care US: 9-15 years; patients endure numerous other tests, misdiagnoses, unnecessary medications Canada: effective early diagnosis, but follow-up care lacking The excuses practitioners use to avoid diagnosing celiac disease Don’t believe in it, despite research and documentation Don’t want to learn about another illness Gluten-free diet is too difficult for patients Symptoms Nadine encountered as an ER nurse that may have signaled celiac disease Migraine headaches Abdominal pain Neurological disorders (headaches, difficulty with balance) Fever Why practitioners should be concerned about malpractice suits if celiac disease goes undiagnosed Ignorance is not a defense Michael Marsh contends that failure to do appropriate screening signals liability Avoid by learning the basics of celiac disease, how to diagnose and follow-up Why celiac disease needs to be part of differential diagnosis for every patient Indicators of celiac disease and non-celiac gluten sensitivity HLA-DQ2 or HLA-DQ8 gene denotes predisposition for celiac proper AGA antibody suggests gluten sensitivity Maladies suffered by patients whose celiac disease went undiagnosed Mental health issues Neurological disorders Seizures Balance issues Abdominal pain Incorrect diagnosis of Crohn’s or colitis Hemorrhoids GERD High blood pressure Heart attack Stroke Cancer Why standardization of testing and follow-up care is a necessity Screenings are often misinterpreted Celiac patients who follow a gluten-free diet are often told that they have been cured or that the initial test was a false positive when follow-up shows antibodies in normal range The story of Nadine’s 70-year-old celiac patient Diagnosed with celiac disease by biopsy, but received no follow-up care Suffered from significant neurological issues (e.g.: gluten ataxia, falling) Nadine recommended standard lab tests Primary care doctor refused Patient returned to Nadine in distress Doctor culpable for patient’s neurological damage Why celiac patients should consider advocating for universal coverage The differences between celiac diagnoses under universal vs. for-profit insurance systems Financial benefit to early diagnosis under universal system (i.e.: UK, Canada, Italy) No benefit to early diagnosis for insurers under for-profit structure Resources Mentioned: Physicians for a National Health Program Health Care for All Oregon Mid-Valley Health Care Advocates Additional Resources: “Economic Benefits of Increased Diagnosis of Celiac Disease in a National Managed Care Population in the United States” from the Journal of Insurance Medicine Connect with Nadine: Instagram Facebook Contact via Email Books by Nadine: Dough Nation: A Nurse's Memoir of Celiac Disease from Missed Diagnosis to Food and Health Activism