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
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
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:
‘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
