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Celiac Disease for Nurses EP037

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

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

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Safely Traveling on a Gluten-Free or Paleo Diet EP036

Wanderlust.

It is human nature to want to explore, to experience a geography and culture different from our own. Travel can truly enrich our lives. Yet if you have celiac disease or non-celiac gluten sensitivity, the prospect of being away from the familiar for an extended period can be intimidating. Will I be able to find a grocery store? How do I locate a gluten-free restaurant that I can trust? What do I need to bring with me to ensure that I am avoiding gluten? And what if, despite my best efforts, I am accidentally exposed to the gluten protein?

No one wants their trip ruined by an unexpected illness, but you shouldn’t let the fear of gluten exposure keep you from going on an important business trip or taking that vacation you’ve always dreamed of. The Gluten Free RN has ten years of experience helping people discover that they can travel safely on a gluten-free or Paleo diet, and today she shares her recent travel experiences with you. Road trip with Nadine and learn how she locates safe restaurants, what she takes along to avoid inadvertent gluten exposure, and which apps and online resources offer the best advice for gluten-free travel!

What’s Discussed: 

The danger of living in a bubble

  • Leads to isolation
  • No way to live

 Nadine’s mission to teach people how to travel safely on gluten-free/Paleo diet

  • Follow her travels on social
  • Posts include pics of locations, food
  • Various travel tips

 How Nadine packed her cooler for a summer road trip to Boston

 The challenge of eating out on the road

  • Lucky to live in Pacific Northwest
  • 37 100% gluten-free restaurants in Portland
  • Accommodating to food intolerance
  • More difficult other places
  • Stressful when unfamiliar with establishment

 The fundamentals of a food desert

  • Little/no access to fresh fruits, vegetables
  • Most available food is highly processed

 Nadine’s advice around locating grocery stores, fresh foods when traveling

 Nadine’s tips for locating safe restaurants

  • Employ the Find Me Gluten Free app
  • Read Yelp reviews, though can be deceptive
  • Avoid restaurants that make pizza
  • Flour stays in air for up to 72 hours
  • Enormous risk of cross-contamination

 The myth that heat breaks down the gluten protein

  • Gluten protein is heat stable
  • Very difficult to denature (even at temperatures of 1200°)
  • Applies to woks, fryers and grills

 How Nadine is able to go without a meal when necessary

  • Nutrient ‘gas tank’ is full
  • High levels of vitamin D, B6, B12 and magnesium
  • Better to skip than be sick for days, weeks or months

 Who to talk to when you are eating out

  • Start with wait staff, chef
  • Speak with manager, if necessary

 Nadine’s experience at a highly-rated restaurant in Boston

  • Selected for positive Yelp reviews
  • Friend used Nima sensor, daughter’s meal contained gluten
  • Notified wait staff, spoke to chef and manager
  • Though establishment caters to gluten-free community, next four meals also tested positive for gluten
  • Learned that pizza was also made in kitchen
  • Stopped by grocery store on way back to hotel
  • Made great, quick and easy dinner in room

 Nadine’s gluten-free travel supply packing list

  • Bamboo utensils
  • Pans
  • Nima sensor or EZ Gluten strips
  • Gluten Free Passport allergy cards
  • Activated charcoal (to take with water after accidental exposure)
  • Sense of humor

 The best gluten-free online travel resources

 Why you should avoid fast food/restaurant chains that claim to have gluten-free offerings

  • Risk of cross-contamination too high
  • May not truly understand what it means to be gluten-free
  • Using gluten-free label as marketing tool

 Nadine’s upcoming River Cruise on the Danube

  • Opportunity for safe travel
  • Responsible, attentive chefs
  • Nadine on hand to confirm food is gluten-free, Paleo

 The food options available to the gluten-free population

  • Meat, fish and eggs
  • Nuts and seeds
  • Fruits and vegetables

Resources:

International Celiac Disease Symposium

Applegate

Kite Hill

Mary’s Gone Crackers

Jilz Crackerz

EPIC bars

Gluten Free Portland Restaurant List

Amy Fothergill of the Warm Kitchen

Ground Breaker Brewing

Whole Foods

Natural Grocers

Find Me Gluten Free

Nima Sensor

EZ Gluten Test Strips

Gluten-Free Globetrotter

Gluten Free Passport

Melodies of the Danube Brochure

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

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Men and Celiac Disease EP035

When boys are hurt, we tell them to ‘rub some dirt on it’ and get back in the game. So it comes as no surprise that men have a tough time admitting weakness, especially to something as innocuous as a slice of bread. Perhaps this explains why celiac disease is considered a women’s issue, when in reality the male-to-female ratio is closer to 1:1.

Today the Gluten Free RN discusses the large numbers of men in the US who go undiagnosed or misdiagnosed, sharing several anecdotes of patients whose symptoms resolved on a gluten-free diet. She covers the particular social challenges for men with celiac disease, the laundry list of symptoms men may encounter, and the specifics of nutrition she recommends for gluten-sensitive patients.

Through it may be difficult to give up pizza and beer with the guys, it is worth the effort to go from sick and struggling to happy and healthy. Listen in and learn how to make going gluten-free simple and easy, even for men with limited culinary skills. Add bacon fat to your greens AND regain your abs with advice from the Gluten Free RN!

What’s Discussed:

The myth that men are less likely to suffer from celiac disease

  • 3 women diagnosed for every man
  • Actual ratio of men to women is 1:1
  • Huge numbers of undiagnosed celiac patients in US

The addictive nature of gluten

  • Morphine-like effect
  • Difficult to give up pizza, beer

Case study of man diagnosed with pancreatitis

  • Athletic entrepreneur in 40’s
  • Tested positive for celiac disease
  • Adopted gluten-free diet
  • Pancreatitis resolved
  • Fatigue and throat-clearing went away

Common symptoms of celiac disease in men

  • Fatigue
  • Thyroid issues
  • Anemia
  • Osteoporosis
  • Bowel issues
  • Difficulty swallowing
  • Chronic cough
  • GERD
  • Gastritis
  • Hemorrhoids
  • Gas
  • Bloating
  • Diarrhea
  • Constipation
  • Irritability
  • IBS
  • Urinary incontinence
  • IBH
  • Erectile dysfunction
  • Prostatitis
  • Prostate cancer
  • Facial ticks

Why men with osteoporosis and anemia together should assume they have celiac disease

  • Review labs for red blood cell count
  • Check for hemoglobin and hematocrit in right range

Nadine’s patient with a climbing PSA (lab indicator of prostate cancer)

  • Patient had difficulty sleeping, snoring issues
  • Had to eat bread or cereal before coffee to avoid abdominal pain
  • Suffered from chronic belching, brittle nails
  • Adopted variation of Paleo diet, symptoms resolved

How Nadine’s doctor had a change of heart around celiac disease

  • Nicknamed her ‘Gluten Insufficiency Nurse’
  • Called to request consultation
  • Endoscopy report indicated he had celiac disease
  • Symptoms resolved on gluten-free diet
  • No longer needed Cialis

The lack of celiac understanding exhibited by healthcare practitioners in the US

Doug’s story

  • PA diagnosed with atypical Crohn’s
  • Three trips to ER with GI bleeding
  • Endured surgery to resect bowels
  • Followed Nadine’s instructions for gluten-free diet
  • No longer has Crohn’s, rectal bleeding
  • Feels significantly better

How gluten causes excessive gas, explosive diarrhea and constipation

  • Gluten can trigger paralysis of intestines
  • Normal BM with diet change

Nadine’s advice around nutrition for gluten sensitive patients

  • Super-good, high fat diet
  • Paleo, whole food diet is ideal
  • Incorporate meat, fish, eggs, fruits, vegetables, nuts and seeds
  • Eliminate all grains, legumes and processed foods
  • Replace starches with potatoes, rice
  • Make choices based on preference and nutritional value
  • Select fewer processed, more fresh foods
  • Don’t just replace gluten-containing foods with gluten-free version (processed = nutrient deficient)

The benefits of bacon

  • Can use bacon fat to sauté greens
  • Body uses fat to heal, keep brain and nervous system healthy, prevent neurological disorders

Why men may be more resistant to diet change

Nadine’s advice for men on eating fresh, gluten-free food

  • Find a few easy-to-prepare recipes you like
  • Use a Crock-Pot
  • Incorporate fruits and vegetables
  • ‘If it’s hard, you’re doing it wrong’

Why subsidized ingredients are found in countless products

  • Government pays food manufactures to incorporate
  • Wheat, corn, soy and peanuts in surprising foodstuffs like catsup, tuna

The social challenges for men with celiac disease

  • Don’t want to be perceived as needy, weak
  • Others may be unkind if express special dietary needs
  • Especially difficult if others cooking for you, at special events (e.g.: wedding)

How switching from vegan or vegetarian to Paleo has affected Nadine’s male patients

  • Realize healthy weight
  • Able to gain muscle mass
  • Pain issues resolve
  • Improved mood

Resources:

The Whole 30: The 30-Day Guide to Total Health and Food Freedom  by Melissa and Dallas Hartwig

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

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Addiction Issues, Celiac Disease and Gluten EP034

Few things are as painful as losing a loved one to an overdose. Addiction is such a powerful demon, and most of us have friends or family who are facing it right now. It is easy to feel helpless, believing that there is little you can do to ease their pain. But what if a diet change could resolve the physical and psychological pain at the root of the dependency? You might be surprised to learn that gluten binds with the opioid receptors in the brain, functioning as a ‘gateway drug’ to other addictions.

Today the Gluten Free RN shares her experiences with addiction and overdose during her 17-year career in the ER, explaining how she made the connection between undiagnosed celiac disease and addiction issues. She discusses the US opioid epidemic and how a mass screening for celiac disease could prevent such widespread substance abuse. Listen as she describes the morphine-like effects of gluten on your brain, the role of the microbiome in dictating cravings, and why gluten may be at the root of the pain that leads patients to self-medicate with dangerous recreational drugs.

The sad truth is that 91 Americans die every day from an opioid overdose. Because undiagnosed celiac disease goes hand in hand with addiction, is it past time to get our loved ones tested. Suggest it today — it could save a life.

What’s Discussed:

The recent flood of headlines regarding the US opioid epidemic

How exorphins affect the brain

  • Endorphins release chemical to make person feel good (i.e.: runner’s high)
  • Ingest exorphins, make feel differently (e.g.: good, tired, sedate)
  • Includes food, alcohol, pharmaceuticals and recreation medications (marijuana, cocaine, heroin, methamphetamines)

How Narcan reverses a heroin overdose

  • Binds with opioid receptors

The potential connection between gluten and opioid addiction

  • Gluten binds with same receptors in brain
  • Addiction to gluten, dairy may be precursor to other addictions
  • Many self-medicate with ‘comfort food’ containing wheat and dairy (i.e.: pizza, mac and cheese)

The morphine-like effects of gluten and dairy on your brain

  • Very similar to narcotics
  • Elimination diet causes uncomfortable detox process
  • Can take a few days, several weeks
  • May experience fatigue, depression, abdominal pain, headaches
  • Feel better once body clear of damaging proteins

The substances patients abuse to treat pain

  • Prescription drugs
  • Over-the-counter drugs
  • Alcohol
  • Cigarettes
  • Recreational drugs (e.g.: methamphetamine, marijuana)

The symptoms of pain patients may experience due to gluten

  • Autoimmune issues
  • Intractable headaches
  • Psychological, emotional anguish

The data around opioid overdose in the US

  • 91 Americans die every day
  • 32,000 people die annually
  • Numbers likely much higher

How gluten sensitivity may lead to pain med addiction

  • Opioid receptors may be damaged, destroyed by gluten
  • Patient cannot absorb pain meds due to villous atrophy
  • Need stronger meds, higher dose

Common prescription meds for pain

  • Vicodin
  • Percocet
  • Morphine
  • Dilaudid

Why patients turn to heroin for pain relief

  • Less expensive to acquire
  • Easily accessible

How food can act as a ‘gateway drug’ to other addictions

  • Celiac disease causes nutrient deficiencies
  • Magnesium
  • Folic acid
  • B vitamins
  • D3
  • Addictions to alcohol, cigarettes, shopping, etc. seek to fill void
  • Eliminate gluten and heal intestines, addictions resolve

Why Nadine advocates a mass screening for celiac disease

  • HLA-DQ2, HLA-DQ8 gene carriers more susceptible to addiction issues
  • Identification can prevent opioid addiction

How ER departments treat alcoholics

  • Banana bag (liter of saline + multivitamin, thiamin, folic acid and magnesium sulfate)
  • Addresses nutrient deficiencies
  • Prevent the shakes, help patient detox gradually
  • Celiac disease may be underlying issue

The power of the microbiome

  • Tiny bacteria live in intestine
  • Dictate what we eat, drink through cravings
  • Communicate with brain (e.g.: yeast signals need for sugar)

The mental health issues caused by untreated celiac disease that may lead patients to self-medicate

  • Depression
  • Anxiety
  • Hallucinations
  • Schizophrenia
  • Bipolar disorder

 

Resources:

“Here’s How a Key Part of the Opioid Legislation is Not Working” in the Boston Globe

“Gluten Sensitivity May Be a Misnomer for Distinct Illnesses to Various Wheat Proteins” in Scientific American

“John F. Kennedy’s Pain Story: From Autoimmune Disease to Centralized Pain” in Practical Pain Management

“Malabsorption of Opioid Medications” in Practical Pain Management

“The Opioid Effects of Gluten Exorphins: Asymptomatic Celiac Disease” in the Journal of Health, Population and Nutrition

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

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21 Important Facts About Celiac Disease EP033

There are a number of misconceptions about celiac disease, even within the medical community! Despite a growing body of research to the contrary, many practitioners still believe celiac disease to be strictly a gastrointestinal issue with a just a few tell-tale symptoms. It’s time to get the facts, and today the Gluten Free RN shares 21 important truths about celiac disease that you need to know.

 Nadine shares her take on the list compiled by Gluten Free Works, covering the truth about who is at risk, the wide variety of neurological symptoms a celiac patient might present, and the components of an optimal treatment plan. As the most common genetic autoimmune disease in the world, it is incredibly important that we understand how gluten exposure can damage the intestines and cause debilitating nutrient deficiencies.

 Nadine also explains why celiac disease often goes undiagnosed and how an astute practitioner is able to accurately interpret biopsies, antibody screenings and lab work. Get familiar with these 21 important facts about celiac disease, and become your own advocate!

 What’s Discussed: 

  1. Celiac disease is the most common genetic autoimmune disease in the world
  • Powerful as consumer group, ‘vote with dollars’
  • Purchasing fewer grains
  • More and more gluten-free products available
  • Choose grass-fed, no antibiotic/hormone meat
  • Look for local, organic, non-GMO produce
  1. Celiac disease is the most commonly misdiagnosed disease in the world
  • Patients often diagnosed with other disorders
  • Gluten-free diet necessary for symptoms to resolve
  1. Celiac disease blood tests are not pass/fail
  • Measure antibody levels
  • Suggest how likely intestinal biopsy will discover damage
  • 70% false negative
  • Anti-TG2 or IgA EMA antibodies indicate gut damage
  1. Celiac disease can affect any genetically predisposed person of every race of gender and can first present symptoms at any age
  • No one can be ruled out
  • HLA-DQ2, HLA-DQ8 indicate genetic predisposition
  • 30% of those diagnosed over age 60
  1. Optimal treatment of celiac disease includes a 100% strict gluten-free diet, nutrient deficiency identification and replenishment, and education and support that meet the physical and emotional needs of the patient
  • May need to eliminate dairy, soy, grains and legumes as well (anything that causes inflammation)
  • ‘Find your people’
  1. Most cases of unresponsive celiac disease are due to inadvertent gluten exposure, where the person is consuming gluten without realizing it
  • May not exhibit symptoms when exposed to gluten (airborne, via cross-contamination)
  • Have expert examine home environment to ferret out potential sources
  1. The average person with celiac disease has a normal body mass index
  • Traditionally thought to be underweight
  • Roughly 33% of celiac patients are overweight
  • Obesity indicates malnourishment (body’s attempt to store cheap energy)
  1. Silent celiac disease refers to a person who tests positive on blood test and villous atrophy on intestinal biopsy, but exhibits no overt symptoms
  • Roughly 50% of those diagnosed on screening exam would claim to have no symptoms
  • Astute practitioner recognizes warning signs
  1. Celiac disease presents submicroscopic damage causing nutrient deficiencies before villous atrophy
  • Damage can occur before endoscopy finds it
  • Marsh 1 damage is first stage, caused by gluten
  • Don’t wait for total villous atrophy (Marsh 4 damage) to adopt gluten-free diet
  • Ask knowledgeable practitioner to review biopsies, antibody screenings and lab work
  1. 50% of people diagnosed with celiac disease exhibit neurological symptoms at the time of diagnosis
  • Neuropathy (numbness or tingling in hands and feet)
  • Seizure disorders
  • Ticks (especially facial)
  • Bell’s palsy
  • Fasciculation of muscles
  • ‘Pins and needles’ in feet
  • Gastroparesis
  • Constipation (paralysis of intestines)
  1. Doctors consider celiac disease to be a gastrointestinal disease
  • Symptoms can be neurological
  • Medical professionals must be astute, recognize all 300 symptoms
  1. Anxiety can be the only symptom of celiac disease
  • Due to nutrient deficiencies
  • Irritability can be sign of gluten sensitivity
  1. Celiac disease tests are not pass/fail
  • Follow up testing should be performed if symptoms don’t resolve
  • ‘Seroconversion’ means can test negative one day, then positive two weeks later
  1. Patient education is the most important predictor of good clinical outcome in celiac disease
  • Find a practitioner to help develop diet for health/lifestyle
  • Pursue body work to repair damage, strengthen body
  1. Celiac disease symptoms can be completely different among family members
  2. Celiac symptoms number over 300, affecting every system and any organ
  1. Symptoms in celiac disease are due to inflammation and/or nutrient deficiencies from chronic intestinal damage
  • Gluten-free diet will heal intestines, eliminate inflammation
  • Requires time, energy and investment in best possible food
  1. Celiac disease diagnosis can take ten years or more from the time symptoms first present
  • Frequently last disease considered by doctors (in for-profit healthcare systems)
  • Countries with universal health care diagnose much more quickly
  1. Celiac disease affects over three million people in the US, yet the vast majority are not diagnosed
  • Symptoms considered definitive diagnoses, treated superficially
  • Type 1 diabetes
  • MS
  • ALS
  • Lupus
  • Sjögren’s syndrome
  • Anemia
  • Osteoporosis
  • Failure to thrive
  • Eating disorders
  • Underlying cause (celiac disease) left untreated
  1. Exposure to gluten is the most important environmental factor in celiac disease
  • Sooner gluten is removed, more likely to achieve full remission
  • If gluten is never introduced, celiac disease will never develop
  1. Although celiac disease is now known to cause over 300 symptoms, the medical community has traditionally instructed doctors that celiac disease affects children, presenting symptoms of diarrhea, wasting muscles, anemia, and abdominal distention
  • Be your own advocate

 

Resources:

Recognizing Celiac Disease: Signs, Symptoms, Associated Disorders and Complications by Cleo J. Libonati

21 Important Celiac Disease Facts You Need to Know…

Gluten Free Works

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

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Why a Gluten Challenge is NOT Recommended EP032

You don’t have to prove to anyone that you have celiac disease proper. Because food functions as both medicine and poison, it is important to have all the facts before you get talked into a gluten challenge … and the fact is, going back on gluten after you have adopted a gluten-free diet will cause organ damage.

The Gluten Free RN speaks to the motivation behind doing a gluten challenge, the consequences for celiac and gluten sensitive patients, and her work as a patient advocate to discourage people from being talked into a gluten challenge. She offers a detailed risk versus reward analysis of braving a gluten challenge, explaining how the maintenance of a gluten-free diet prevents the development of celiac disease and other autoimmune disorders.

Nadine also covers the unreliable nature of celiac testing in the US, where the medical community lacks savvy in interpreting results, and explains why biopsy results are no longer considered the gold standard of celiac testing. Listen in to understand the recommended diet for those who have adopted a gluten-free lifestyle and why it requires a long-term commitment. Get armed with information and protect yourself and your family from the dangerous, irreversible consequences of a gluten challenge!

What’s Discussed: 

The gluten free lifestyle

  • Involves long-term change
  • Can’t take days off

 Why you should be cautious of restaurants with a gluten-free menu

  • Very few actually deliver gluten-free meal
  • Employees may not understand contamination, cross-contamination

 The advantages of living in the Northwest US

 Nadine’s recommendations re: food options

  • Organic produce
  • Grass-fed meat
  • Whole foods produced locally

 The misguided reason why people do a gluten challenge

  • Want to prove presence of celiac disease
  • You don’t have to prove to anyone, especially if HLA-DQ2 or HLA-DQ8 gene carrier
  • 30-50% of population has genetic predisposition to celiac disease

 The value of a gluten-free diet in preventative medicine

  • Averts celiac disease and associated issues
  • Prevents other autoimmune disorders
  • Type 1 diabetes
  • Lupus
  • Sjögren’s
  • Rheumatoid arthritis
  • MS
  • ALS

 What it means to do a gluten challenge

  • Targets patients who have adopted a gluten-free diet
  • Requires they consume gluten (2-6 slices of bread/day)

 The consequences of a gluten challenge on celiac and gluten sensitive patients

  • Seizures
  • GI bleeds
  • Appearance of bowel cancer, bone cancer
  • Inability to get out of bed
  • Organ damage

 The risks vs. rewards of enduring a gluten challenge

  • No benefit other than proving presence of celiac disease
  • Can be thrown into refractory celiac disease (permanent, irreversible damage to intestines)

 Why Nadine would never do a gluten challenge

 Why biopsy results are no longer considered the gold standard of celiac testing

  • Often misinterpreted, read incorrectly
  • Damage can be patchy

 Why an antibody panel can be unreliable in identifying celiac disease

  • Takes time for body to mount autoimmune response
  • 70% false negative nationwide

 How long it takes to obtain celiac diagnosis

  • Two to three weeks in countries where medical community is savvy about celiac disease
  • Nine to 15 years in US

 Nadine’s advice around celiac testing

 The enduring nature of celiac disease

  • Doesn’t go away
  • Children don’t grow out of it

 Nadine’s nutrition guidelines for celiac patients

  • Gluten- and dairy-free
  • Ideally Paleo
  • Nutrient dense foods

 Nadine’s work as a patient advocate

  • Seeks to help people stay healthy, avoid illness/disease
  • Patients get lives back, active and thriving

Resources:

Whole Foods

Natural Grocers

First Alternative Co-op

LifeSource Co-op

Cyrex Laboratories

LabCorp

EnteroLab

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

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Celiac Disease for Health Care Providers EP031

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

 

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Small Intestinal Bacterial Overgrowth and Celiac Disease EP030

Nobody wants bad bacteria, parasites, yeast or food particles hanging around their small intestine! There are a number of causes of small intestinal bacterial overgrowth (SIBO), and undiagnosed celiac disease just happens to be one of them.

The Gluten Free RN is prepared to discuss the complexity of health issues celiac patients must resolve after going on a gluten free diet, one of which may be SIBO. She shares the symptoms of small intestinal bacterial overgrowth, how we test for SIBO, and potential treatments for the condition. Listen in to learn how foods and medication affect the microbiome and alter the environment of your intestines.

What’s Discussed:

The complexity of healing once a celiac patient goes gluten free

  • Very rarely does diet change heal all associated disorders
  • Other issues like SIBO must be treated once intestines heal

The causes of irritable bowel syndrome

  • Thought to be caused by stress
  • Studies now show food poisoning may be trigger

How food, drink and medication affect your intestines

  • Certain food/drink can move in bad bacteria, push out good
  • Antibiotics change pH of stomach acid
  • Bacteria, parasites, yeast and food particles get into small intestine

The consequences of damaged villi due to undiagnosed celiac disease

  • Compromised immune system
  • Inflammation
  • Body can’t absorb nutrients

The process of healing your intestines

  • Takes six months to a year
  • Must eliminate all foods that cause inflammation (gluten, dairy, soy, etc.)
  • After villi heal, deal with additional health issues (i.e.: SIBO)
  • Villi MUST grow back before good bacteria can return

The symptoms of SIBO

  • Gas, bloating
  • Abdominal pain
  • Diarrhea
  • Constipation

How to test for SIBO

  • Consume sugary drink, then breathe into tube
  • Hydrogen sulfate associated with diarrhea
  • Methane connected to constipation
  • Gives snapshot of what is happening in intestines

How SIBO is treated

  • Antibiotics (rifaximin)
  • Herbs (i.e.: oregano oil, berberine, neem)
  • Fecal microbial transplant

Risk factors for SIBO

  • Any course of antibiotics
  • Diabetes
  • Bowel surgery
  • Crohn’s disease
  • Undiagnosed celiac disease

Resources:

Primal Docs

SIBO Info Website

“Small Intestinal Bacterial Overgrowth: A Comprehensive Review” in Gastroenterology and Hepatology

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

 

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Celiac Disease and Your Spleen EP029

Did you know that the spleen plays a leading role in a properly functioning immune system? As the largest organ in your lymphatic system, the spleen spends its time fighting infection and keeping you healthy. Unfortunately, research points to a connection between disorders of the spleen and celiac disease. And if your immune system is already compromised because of gluten damage to your intestines, a spleen issue leaves you at heightened risk for a variety of infections and autoimmune diseases.

Today the Gluten Free RN shares her personal connection to genetic spherocytosis and how spleen damage affected her family. She also covers several studies that document the correlation between spleen issues and celiac disease. Listen in to understand how your spleen functions, the symptoms of spleen disorder, and the autoimmune diseases you may develop if your spleen is damaged or removed.

What’s Discussed:

How your spleen works to keep you healthy

  • Filters used/damaged red blood cells
  • Harvests iron to recycle
  • Produces antibodies, white blood cells
  • Fights infection
  • Vital to immune system

Conditions you may acquire if spleen is damaged (increased risk)

  • Pneumonia
  • UTI
  • Overwhelming sepsis

Instances in which spleen may be enlarged

  • Mononucleosis
  • Some bacterial infections, metabolic disorders
  • Liver diseases
  • Some blood cancers, lymphoma
  • Blood clots in veins of liver, spleen

Symptoms of spleen issues

  • Pain in upper left quadrant
  • Fatigue
  • Anemia
  • Bruise easily
  • Bloated

The correlation between genetic spherocytosis and celiac disease

  • As high as 88% in some studies

How the ratio of spleen diameter to RDW can indicate celiac disease

  • Two-thirds of celiac patients in study had elevated red blood cell distribution width
  • Small spleen in 80% of celiac patients
  • Spleen diameter to RDW ratio under 6 had 88.5% specificity in predicting celiac disease

Why patients with hyposplenism should get tested for celiac disease

  • 25-75% of celiac patients have hyposplenism
  • Look for red blood cell abnormality
  • HLA-DQ2 and HLA-DQ8 genes indicate predisposition for celiac disease
  • Antibody test available from EnteroLab or Cyrex Laboratories
  • Ask for total IgA, IgG

Other autoimmune diseases patients with hyposplenism may develop (increased risk)

  • Type 1 diabetes
  • Lupus
  • Sjögren’s syndrome
  • Vitiligo
  • Raynaud’s
  • Autoimmune thyroiditis
  • ALS, MS, any demyelination of nervous system
  • Idiopathic thrombocytopenia
  • Autoimmune hepatitis

Nadine’s recommendations around nutrition

  • Local, organic
  • Nutrient dense
  • Gluten-free, Paleo

The link between hyposplenism and autoimmune manifestations of celiac disease

  • Autoimmune disorders may cause splenic hypofunction or vice versa
  • Study hypothesizes that higher risk for splenic function in celiac patients may be related to celiac disease rather than autoimmunity
  • Prevalence of celiac disease-associated hyposplenism increased from 19% in uncomplicated patients to 59% in those with autoimmune disorders

Why celiac patients may not benefit from iron supplements, infusions

  • Damaged intestines cannot absorb iron
  • Damaged spleen destroys healthy red blood cells

Resources:

“Ratio of Spleen Diameter to Red Blood Cell Distributions Width” in Medicine (Baltimore)

EnteroLab

Cyrex Laboratories

“Is it Worth Investigating Splenic Function in Patients with Celiac Disease?” in the World Journal of Gastroenterology

“Hyposplenism in Gastrointestinal Disease” in Gut BMJ

“Hyposplenism, Adult Coeliac Disease, and Autoimmunity” in Gut BMJ

“Splenic Volume Differentiates Complicated and Non-Complicated Celiac Disease” in UEG Journal

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