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Celiac Disease for Nurses EP056

Celiac disease is messy. It can develop at any age, in any ethnicity, in both men and women, with any symptom or no symptom at all. Every patient is different, and each one presents differently. There is nothing cut and dried about celiac disease, except that a 100% gluten-free diet is necessary for healing.

Nurses are in a unique position to make sense of this chaos and advocate for patients, recognizing possible celiac disease and non-celiac gluten sensitivity and recommending appropriate testing when necessary. Today, the Gluten Free RN covers the basics of celiac disease for nurses, explaining the frequency with which the disorder is misdiagnosed or goes undiagnosed for years.  She walks us through the testing required for a diagnosis of celiac disease proper, who should undergo testing, and why one negative test doesn’t rule out the disease.

Nadine speaks to the 300-plus signs of celiac disease, reviewing the most common symptoms and the overlap between celiac disease and autoimmune disorders like type 1 diabetes. She also shares the discouraging statistics around the impact of undiagnosed celiac disease on fetal development and maternal health. Listen in to understand why Nadine encourages fellow nurses include celiac disease as part of their differential diagnosis, providing gluten-sensitive patients with a safe, gluten-free environment and a higher quality of life!

What’s Discussed: 

The frequency with which celiac disease is misdiagnosed or goes undiagnosed

  • 94% of people with celiac disease are undiagnosed
  • Current estimate is 3% of US population
  • Takes average of 9-15 years for diagnosis

 The challenges around getting a diagnosis of celiac disease proper

  • Requires genetic test, celiac antibody test and documented villous atrophy
  • Celiac antibody test = 70% false negative in US

 The chronic nature of celiac disease

  • Patients must go 100% gluten-free for life

 The 300-plus signs and symptoms of celiac disease

  • Primarily a neurological disorder

 Why celiac patients must be tested for potential nutritional deficiencies

  • May need B12, Mg RBC, D3, Zn or I supplements

 The detrimental impact of undiagnosed celiac disease on fetal development, maternal health

  • 800-900% increase in miscarriage
  • Increased risk of stillbirth, premature birth and neural defects

 Where gluten is hiding

  • Medications, personal care products and food items

 Who should be tested for celiac disease

  • Patients with mental health issues, developmental delays
  • Anyone with an autoimmune disorder (e.g.: type 1 diabetes)
  • Family members of celiac patients

 Why one negative test doesn’t rule out celiac disease

  • Can seroconvert at any time

 How a gluten-free diet can benefit children with stunted growth

  • Growth resumes if diagnosed before epiphyseal plates seal

Resources:

Celiac Disease and Non-Celiac Gluten Sensitivity for Nurses

Recommended Labs

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

Gluten Free Works

PubMed

Cyrex Labs

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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Signs and Symptoms of Celiac Disease and Gluten Intolerance in Children EP006


In this episode of ‘Gluten Free RN,’ Nadine discusses common signs and symptoms of gluten intolerance in children as well as the importance of identifying celiac disease early to allow for the growth and development of body and brain.

Nadine employs anecdotes about her own clients at the Gluten Free RN office to illustrate the myriad of ways that gluten can affect the health and development of undiagnosed kids.

This episode explains the GI problems, developmental delays, autoimmune disorders and neurological issues that children with gluten intolerance face as long as they remain undiagnosed. Click and listen to recognize the warning signs!

What’s Discussed: 

The common dismissal of celiac symptoms in children

The profound impact of gluten intolerance on fetal development and maternal health

  • It typically takes 9-15 years for a person to be diagnosed correctly

Signs and symptoms of celiac disease and gluten intolerance in children

Failure to thrive

  • Low birthweight
  • Short stature, stunted growth and delayed development
  • Lactose intolerance
  • Abdominal pain and vomiting
  • Focus and retention issues (ADD, ADHD, ODD)
  • Autism
  • Psychiatric issues
  • Delayed puberty
  • Listen for the full list

Katie’s story

  • After suffering from chronic constipation, her colon was removed – but her health did not improve until she learned about celiac disease and changed her diet
  • Because her growth was stunted as a result of malnourishment, Katie only grew to 5’3” despite having a size 10 foot

Why vitamins, minerals and supplements don’t help children with celiac disease or gluten intolerance

Why undiagnosed celiac disease patients suffer from focus issues and psychiatric disorders

  • Inflammation of the brain causes hypoxia
  • Low oxygen flow results in ‘brain fog’

Sam’s story

  • At 17, she was overweight and suffering from abdominal pain
  • She was still wetting the bed and had yet to get her period
  • After receiving a celiac diagnosis and adopting a gluten-free diet, Sam lost 100 pounds and has gone on to have two healthy children

The importance of testing the entire family for celiac disease once one member has received a diagnosis

The high percentage of celiac patients who are asymptomatic

  • Roughly 50% of people diagnosed with celiac disease would say they have no symptoms

The increased chances of developing autoimmune disorders when children with celiac disease go undiagnosed

The enormous genetic overlap between celiac disease and Type 1 diabetes

Why parents should be tested for celiac disease prior to a pregnancy

  • Undiagnosed expectant mothers are at an increased risk of miscarriage, complications and delivering babies with low birthweight and neural defects

How to navigate birthday parties, camps, school events, etc.

  • Proper planning and communication make it easy

Resources Mentioned: 

How Doctors Think by Jerone Groopman

 University of Chicago Medicine Celiac Disease Center Website

 EnteroLab Celiac Testing Resources

 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

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Symptoms of Undiagnosed Celiac Disease and Gluten Intolerance EP005


This time on ‘Gluten Free RN,’ Nadine continues to cover the basics of celiac disease and gluten intolerance, reviewing the consequences of intestinal damage and gluten in the bloodstream and discussing what you can and cannot eat as part of a gluten-free diet.

A registered nurse certified in emergency care and a celiac patient herself, Nadine is well-versed in

the health complications and symptoms you might experience with undiagnosed celiac disease or gluten intolerance, including neurological disorders, dermatologic difficulties and even mental health issues.

Join the Gluten Free RN on this podcast to learn the signs of undiagnosed celiac disease and gluten intolerance so that we can all be healthy and vital for years to come!

What’s Discussed: 

The definition of celiac disease and its chronic nature

  • Diagnosis requires HLA-DQ2 and/or DQ8 genes and documented villous atrophy

The importance of healthy intestinal tissue

  • 70-90% of the immune system is in your intestines

Grains to avoid that contain gluten

  • Wheat
  • Barley
  • Rye
  • Oats (due to cross-contamination)

Places where gluten may be hiding

Gluten-free, nutrient dense foods

Complications caused by gluten in patients with celiac disease or gluten intolerance

  • Chronic inflammation (suffering from an -itus of any kind)
  • Autoimmune disorders
  • Damaged immune system
  • Malnutrition/deficiencies

The increased risk of cancer in patients with undiagnosed celiac disease

Symptoms doctors look for before testing for celiac disease

  • Chronic diarrhea
  • Malabsorption
  • Extreme weight loss or malnutrition

Components of the test for celiac disease

  • Blood test (celiac panel)
  • Biopsy of the small intestines

The amount of time it takes to regenerate damaged villi in the absence of gluten

  • Nadine recommends you continue the clinical trial of a gluten-free diet for at least six to 12 months

Additional signs of a possible gluten intolerance or celiac disease

Additional symptoms Nadine has encountered in undiagnosed patients

Indicators of gluten intolerance in children and elders

Resources Mentioned: 

Montana Gluten Free Website

Kite Hill Non-Dairy Foods

Gluten: Zero Global by Rodney Ford

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