Christmas cookies

Managing the Holidays with Celiac Disease EP050

With the approach of the holidays, you may be nervous about navigating family and workplace gatherings—especially if you are newly diagnosed with celiac disease. How do you explain your dietary restrictions and keep yourself safe, eating well without getting ‘glutened’?

Today the Gluten Free RN shares her best advice around managing the holidays with celiac disease. She offers ten key tenants to help you enjoy the holiday season and mitigate stress, without feeling like you’re missing out. She shares some things you need to avoid, including unsafe situations, people who make you miserable, and cheating on your gluten-free diet! But she also discusses strategies you can implement to make the season bright, such as creating new traditions, getting creative in the kitchen, and finding your tribe—the people who will support you in your gluten-free journey.

Nadine also gives tips around where to go for gluten-free ingredients and holiday recipes, and how to develop a backup plan so you won’t go hungry if the food you encounter is questionable. You are likely to encounter well-intentioned friends and family members who have no idea how to feed you safely at holiday parties. Listen in and learn how to be clear about your dietary needs and take control of your health without isolating yourself from loved ones during this most wonderful time of the year!

What’s Discussed:

#1 Don’t eat anything contaminated with wheat

  • Cannot eat center of pie, any part of turkey with bread stuffing

#2 Beware of good-intentioned people

  • Don’t eat anything questionable
  • Bring a snack with you just in case

#3 Be prepared to establish new traditions

  • Get creative in kitchen

#4 Don’t isolate yourself

  • Find support group, create your own

#5 Gather recipes early

#6 Order ingredients in advance

  • Consider organic, free range turkey

#7 Don’t invite people who make you miserable

  • Set clear boundaries (no complaints, ridicule)

#8 Eat before you go or take your own plate

  • ‘Desperate people make desperate decisions’
  • Take a dish to share, take your portion first

#9 Don’t be a victim

  • Be clear about your needs

#10 Find your people

  • Those who truly love you don’t want you to be sick

Resources:

Nima Sensor

EZ Gluten Test Strips

Paleo Magazine

Paleo Principles: The Science Behind the Paleo Template, Step-by-Step Guides, Meal Plans, and 200+ Healthy & Delicious Recipes for Real Life by Sarah Ballantyne

Sarah Ballantyne on Instagram

Glutenpro

EnteroLab

Connect with Nadine:

Instagram

Facebook

Contact via Email

‘Your Skin on Gluten’ on YouTube

Books by Nadine:

Dough Nation: A Nurse’s Memoir of Celiac Disease from Missed Diagnosis to Food and Health Activism

brain

The 2017 International Celiac Disease Symposium Recap #1 EP042

In his opening talk at the 2017 International Celiac Disease Symposium, celiac expert Dr. Abul Abbas of UC San Francisco said, “We are drowning in data, but thirsting for information.” Though there is still much debate around celiac disease and non-celiac gluten sensitivity (even among global experts), the featured ICDS speakers sifted through the numbers to help practitioners interpret what the latest studies can tell us about the negative effects of gluten and how celiac disease presents in populations all over the world.

Today the globetrotting Gluten Free RN is coming to us from Thailand, after attending the International Celiac Disease Symposium in New Delhi, India. Armed with the latest information from the ICDS clinical forum, Nadine covers talks given by Dr. Abbas on gluten and the immunological system, and Dr. Alessio Fasano on the spectrum of gluten-related disorders. She relays information regarding the barriers researchers face in studying autoimmune disease as well as gluten’s negative impact on body tissue, including that of our brain.

Nadine also shares the most up-to-date statistics around the big business that is celiac disease and the increasing prevalence of gluten intolerance in the US and Asia. She discusses the importance of celiac testing in patients with other autoimmune and neurological disorders and the need for a global education campaign. Listen as Nadine educates you about what gluten is, where it hides, what you can do to avoid it, and how to undo the damage and get healthy again!

What’s Discussed:

The challenge of eating gluten-free in India

The highlights of Dr. Abul Abbas’ talk on the immunological system

  • Celiac disease as autoimmune issue
  • ‘Drowning in data, but thirsting for info’

The importance of the thymus gland

  • T cells manufactured there

Why the ‘mouse model’ doesn’t work well in the study of celiac disease

The impossibility of in vivo experiments for celiac research

The significance of epithelial barriers in a functioning immune system

  • First line of defense against microorganisms
  • Produce local antibodies

The difficulty of studying the dendritic cells

  • Inside tissues

How the immune system recognizes double-stranded RNA (viruses)

  • Can’t escape autoimmune response
  • Should not recognize own single-stranded as ‘invader’

Dr. Terry Wahls’ work around the mitochondria

  • Cured MS with Paleo diet

Dr. Alessio Fasano’s presentation

  • ‘Spectrum of Gluten-Related Disorders’
  • Controversy re: who should go gluten-free
  • Gluten affects every tissue in body (even brain)
  • Celiac cases double every 15 years in US
  • 1:2 in US will try gluten-free diet this year

The big business of celiac disease

  • $17.6B industry at end of 2017
  • Largest untapped market in world

Who is affected by the gluten protein

  • Gluten can’t be digested by human body (long chain amino acid)
  • Triggers autoimmune response, especially in HLA-DQ2/HLA-DQ8 gene carriers
  • Patients without genetic predisposition can present with villous atrophy
  • In absence of celiac diagnosis, may still have non-celiac gluten sensitivity
  • AGA-positive patients at risk for developing neurological issues

How infants exposed to gluten are at an increased risk for developing celiac disease

  • Includes exposure in utero, breast milk
  • No downside to eliminating gluten from baby’s diet

The value of avoiding gluten exposure for infants

  • Emotionally stable
  • Grow, develop appropriately

The latest statistics regarding the prevalence of celiac disease

  • Increased to 3% in US (not 1% consistently reported)
  • 30-50% of world population has genetic predisposition
  • Global prevalence of 1.37%

Celiac disease in the Asian population

  • Used to say could not develop celiac disease
  • At increased risk of developing neurological disorders
  • 6-8M people in east, south Asia
  • 50 countries make up 60% of world population
  • 35B people in China have celiac disease
  • 22B people in India have celiac disease
  • 19% of Chinese 16-25 tested positive for celiac disease in study

How the Chinese diet has evolved over time

  • Older Chinese ate much less wheat
  • Fast food has become common in recent years
  • Despite rice-based diet, many products contain wheat (soy sauce, cashews)

Other disorders that may indicate undiagnosed celiac disease

  • Anemia
  • Osteoporosis
  • Elevated liver enzymes
  • Eating disorders
  • Type 1 diabetes
  • Autoimmune thyroiditis

Why patients should be tested for celiac disease annually

  • Can seroconvert at anytime
  • Develops at any age with any/no symptoms

The new information about a potential connection between Wilson’s and celiac disease

  • 3% of Wilson’s patients tested positive

What celiac experts agreed on at ICDS 2017

  • Poor support, understanding of celiac disease
  • Need to increase knowledge base (general practitioners, food manufacturers, public)
  • Important to find where gluten hides
  • Must take education campaign to non-traditional settings

Resources:

Nima Sensor

Gluten Free RN Travel Podcast EP036

Gluten Free Passport Allergy Cards

Dr. Terry Wahls’ Website

ICDS 2017 Program

Connect with Nadine: 

Instagram

Facebook

Contact via Email

‘Your Skin on Gluten’ on YouTube

Books by Nadine:

Dough Nation: A Nurse’s Memoir of Celiac Disease from Missed Diagnosis to Food and Health Activism

Good Food, Gluten Free by Hilda Cherry Hills

The History of Celiac Disease EP041

Perhaps the most intriguing thing about the history of celiac disease in the US is its absence—from medical textbooks, the vast majority of research studies, and the news—from 1952 through the 1990’s. Why did celiac disease disappear from the healthcare consciousness as well as the public eye?

Today the Gluten Free RN takes a closer look at the story of celiac disease, starting with the first doctor to understand it as a dietary issue back in 1888. She highlights the important progress made by pediatricians Willem Dicke who is credited with identifying gluten as the issue and Sidney Haas who honed the gluten-free diet to exclude specific carbohydrates. Nadine explores the period of time when celiac disease seemingly ‘went dark’ in the United States, discussing the handful of renegade authors and researchers who continued to study the disease despite its absence from health education.

Nadine also explains the resurgence of gluten sensitivity to the public consciousness in the 1990’s, when medical professionals from abroad questioned the claim that there was no celiac disease in the US. She covers our evolving understanding of the symptoms of celiac disease and the woefully inadequate training around gluten in medical and nursing schools. Listen in to find out why the mass screening proposed by the National Institute of Health never materialized and how the for-profit healthcare system impacts celiac patients. Let’s honor the practitioners who dedicated their careers to understanding celiac disease and write our own history through celiac advocacy!

What’s Discussed:

The first doctor to identify celiac disease

  • Samuel Gee, 1888
  • Established dietary approach to treatment

The role of Dr. Sidney V. Haas in advancing celiac treatment

  • All carbs and fats had been eliminated from celiac diet
  • Haas discovered that kind of carbs made difference
  • Experimented with fats, learned that could be absorbed
  • 370 celiac cases studied at Bellevue, only 2.2% not cured

The conclusions of a New York Times article from May of 1950

  • Late 1800’s, celiac disease ‘incurable and often fatal’
  • By 1950, 90% cured and deaths rare
  • Cause still unknown

The grains that contain gluten

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

How Dr. Willem Dicke developed the gluten-free diet

  • Dutch pediatrician during WWII
  • No access to grains during famine, previously sick children improved
  • Mothers realized that when grains returned to diet, sickness returned
  • Dicke credited with determining that gluten causes damage

The myth that celiac is a childhood disease

  • Patients do not ‘grow out of it’
  • When gluten is reintroduced, disease returns (along with other disorders)

Elaine Gottschall’s work in developing the Specific Carbohydrate Diet

  • Grains containing proteins other than gluten have negative effect on digestive tract
  • Gottschall’s model removes all grains
  • Paleo/whole food diet considered ideal

The elimination of celiac disease from medical training

  • Stopped teaching in 1952
  • Debate over carbs vs. proteins
  • Same paragraph appears in medical textbooks from 1952-2008
  • Still taught incorrectly (if at all) in medical, nursing schools
  • Should be part of every differential diagnosis

The Paleo diet Nadine suggests for celiac and gluten-sensitive patients

  • Gluten-, dairy-free
  • Whole food
  • Low carb, super-good high fat
  • Appropriate supplements to remedy deficiencies

Hilda Cherry Hill’s 1976 book Good Food, Gluten Free

  • Hill cured invalid husband with gluten-free diet
  • Whole food, no grain derivatives

The classical symptoms of celiac disease

  • Fatty stool
  • Malabsorption
  • Short stature
  • Low energy
  • Infirm

The expanded picture of how celiac disease may present

  • Osteoporosis
  • Short stature
  • Delayed puberty
  • Iron deficiency anemia
  • Hepatitis
  • Recurrent canker sores
  • Elevated liver enzymes
  • Dental enamel defects
  • Peripheral neuropathy
  • Celiac cerebellar ataxia
  • Seizure disorders
  • Migraine headaches

The genes that indicate a predisposition to celiac disease

  • HLA-DQ2
  • HLA-DQ8
  • Occur in 30-50% of the population

How recognition of celiac disease resurfaced in the 1990’s

  • Gastroenterologists from abroad asking questions

The 2004 NIH Consensus Statement on Celiac Disease

  • Determined that celiac disease grossly underdiagnosed in US
  • Proposed mass screening, healthcare education program
  • Mass screening never materialized (‘too cost-prohibitive’)

How the US for-profit healthcare system impacts celiac patients

  • System profits from incorrect diagnoses
  • Celiac tends to be last thing we test for
  • Patients often spend hundreds of thousands of dollars out-of-pocket

Nadine’s advice for celiac patients around choosing healthcare providers

  • Many still don’t know how to manage celiac disease
  • Look for practitioner of functional/integrated medicine

What has changed since the NIH Consensus Statement in 2004

  • Little real change
  • More media attention, some doctors testing
  • Medical professionals still not educated in testing, follow-up
  • Little support, assistance for patients in adopting gluten-free diet

Dr. Rodney Ford’s role in celiac advocacy

  • Pediatrician, gastroenterologist and allergist
  • Promotes ‘gluten zero world’
  • Gut-brain-skin connection

Nadine’s guidance for vegetarians and vegans

  • Work with nutritionist to be sure not malnourished
  • Consider changing diet for optimal health

The vulnerable populations particularly at risk for celiac disease and non-celiac gluten sensitivity

  • Children
  • Williams, Turner or Down syndrome
  • Developmentally delayed, cystic fibrosis communities
  • Autoimmune patients

Resources:

“Celiac Disease: Most Children are Now Cured but Cause is Still Unknown”  in The New York Times

Management of Celiac Disease by Sidney Valentine Haas and Merrill Patterson Haas

“Whatever Happened to the Cure for Coeliac Disease?  in Nutritional Therapy Today

“The Erie Country Survey of Long-Term Childhood Illness” in the American Journal of Public Health

Good Food, Gluten Free by Hilda Cherry Hills

Dr. Alessio Fasano’s 2003 Celiac Study

2004 NIH Consensus Statement on Celiac Disease

Books by Dr. Rodney Ford

Gluten: ZERO Global by Dr. Rodney Ford

International Celiac Disease Symposium

“Small Intestinal Mucosal Abnormalities in Relatives of Patients with Dermatitis Herpetiformis” in Gut

“Adult Coeliac Disease and Other Disorders Associated with Steatorrhoea” in the British Medical Journal

The University of Chicago: Celiac Disease Facts and Figures

“A History of Coeliac Disease” in Digestive Diseases

“Dermatitis Herpetiformis in Two Patients with Idiopathic Steatorrhoea” in the British Medical Journal

Connect with Nadine: 

Instagram

Facebook

Contact via Email

‘Your Skin on Gluten’ on YouTube

Books by Nadine:

Dough Nation: A Nurse’s Memoir of Celiac Disease from Missed Diagnosis to Food and Health Activism

missing piece

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

Books by Nadine:

Dough Nation: A Nurse’s Memoir of Celiac Disease from Missed Diagnosis to Food and Health Activism

diabetes

Type 1 Diabetes and Celiac Disease EP027

Struggling to maintain control of your blood sugar? A gluten-free diet may be the answer! If you have one autoimmune disorder, you have a 30-50% greater risk of developing another, and both type 1 diabetes and celiac disease fall into that category.

As more and more research points to an enormous overlap between type 1 diabetes and celiac disease, it is in our best interests to mitigate additional risk by getting screened and/or adopting a gluten-free or Paleo diet to mitigate further risk. Today Nadine discusses the prevalence of diabetes, several research studies that explore the connection between type 1 diabetes and celiac disease, and the potential risks for type 1 diabetics who are undiagnosed celiac patients.

Listen and learn how your diet may be affecting your blood sugar and why going gluten-free could improve your health and quality of life!

What’s Discussed: 

The prevalence of diabetes

  • By 2050, half the population will have diabetes
  • According to CDC, 29.1 million have diabetes
  • One out of four don’t know they are diabetic
  • 18,000 young people diagnosed from 2008-2009

The difference between type 1 and type 2 diabetes

  • Minimize risk for type 2 through diet and exercise
  • Type 1 is autoimmune disorder, don’t produce enough insulin to break down sugar

Symptoms of type 1 diabetes

  • Extreme thirst
  • Urgency to urinate frequently
  • Fatigue
  • Weakness

The enormous genetic overlap between type 1 diabetes and celiac disease

  • Scottish study found 94% of type 1 diabetics were HLA-DQ2 or HLA-DQ8 gene carriers
  • 100% overlap if include HLA-DQ2.2
  • Prevalence of celiac disease among type 1 diabetics is 20% higher than general population

The importance of testing all type 1 diabetics for celiac disease annually

  • Can develop celiac disease at any age

The consequences of undiagnosed celiac disease in children with type 1 diabetes

  • Short stature
  • Failure to thrive
  • Early onset osteopenia, osteoporosis
  • Easily broken or rubbery bones
  • Difficulty maintaining glycemic control (low blood sugar, spikes)
  • Anemia

The decreased quality of life for type 1 diabetics who are undiagnosed celiac

  • Development of infections
  • Difficulty with blood sugar maintenance

Research studies re: the percentages of type 1 diabetics who also have celiac disease

  • Iraq – 11.2%
  • Mexican participants – 5.9%
  • Denmark – 12.3%

Nadine’s anecdotal evidence of the overlap

  • Volunteers at community outreach clinic
  • Young man struggling to control blood sugar
  • Nadine recommended gluten-free diet
  • Improved health and quality of life

Health risks associated with an inability to control blood sugar

  • Blindness
  • Kidney failure
  • Amputation of extremities
  • Difficulty healing wounds
  • Heart attacks
  • Strokes

Why carb counting doesn’t control blood sugar

  • Carbs with little/no nutrient value cause spikes in blood sugar

The diet Nadine recommends for type 1 diabetics

  • Variation of Paleo diet
  • Nutrient dense foods
  • Meat and fish
  • Eggs
  • Fruits and vegetables
  • Nuts and seeds

The benefits of a gluten-free diet for type 1 diabetics

  • Weight easier to control
  • Immune system works better
  • Tighter control on blood sugar

The lack of uniformity in screening guidelines

Additional autoimmune diseases that may be avoided with a gluten-free diet

  • Multiple sclerosis
  • Lupus
  • Sjögren’s
  • Scleroderma
  • Autoimmune thyroiditis
  • Graves’ disease
  • Hashimoto’s
  • Vitiligo
  • Raynaud’s

Potential triggers for autoimmune disorders

  • Gluten
  • Change in microbiome
  • Stress to body (i.e.: cold, food poisoning, travel)

 Treatments for small intestinal bacterial overgrowth

  • Low FODMAPs or specific carb diet
  • Rifaximin (antibiotic)

The dangers of maintaining high blood sugar

  • Damage to kidneys, eyes, capillaries, fingers and toes
  • Neuropathy
  • Gastroparesis

The long history of a connection between type 1 diabetes and celiac disease

The need for information re: the connection in diabetic education services

Resources:

“Type 1 Diabetes and Celiac Disease: The Effects of Gluten Free Diet on Metabolic Control” in the World Journal of Diabetes

“Co-occurrence of Type 1 Diabetes Mellitus and Celiac Disease” in the World Journal of Diabetes

“Screening for Coeliac Disease in Adult Patients with Type 1 Diabetes Mellitus: Myths, Facts and Controversy in Diabetology & Metabolic Syndrome

“The Prevalence of Coeliac Disease in Libyan Children with Type 1 Diabetes Mellitus” in Diabetes Metabolism Research and Reviews

“Type 1 and Type 2 Diabetes in Celiac Disease: Prevalence and Effect on Clinical and Histological Presentation” in BMC Gastroenterology

“Coexistence of Coeliac Disease and Type 1 Diabetes” in Przeglad Gastroenterologiczny

“Screening for Celiac Disease in Type 1 Diabetes: A Systematic Review” in AAP News and Journals

Connect with Nadine: 

Instagram

Facebook

Contact via Email

‘Your Skin on Gluten’ on YouTube

Books by Nadine:

Dough Nation: A Nurse’s Memoir of Celiac Disease from Missed Diagnosis to Food and Health Activism

newspaper - Daria-Shevtsova

Celiac Disease and the Media EP026

The gluten-free movement is often dismissed in the media as a fad. Even so-called experts actively discredit the gluten-free diet and apply a negative connotation to terms like PWAG. Have you ever wondered why there is so much misinformation about celiac disease and non-celiac gluten sensitivity in the media? And who sponsors the coverage that dissuades people from going gluten-free?

Today, Nadine explains how the big business of wheat affects which voices we hear in media treatment of the gluten-free movement. In addition, she covers how the for-profit healthcare system in the US affects the timely diagnosis of celiac disease and non-celiac gluten sensitivity.

Celiac disease is a medical, social and economic issue with political implications. Listen and learn how to choose high quality, nutrient dense foods, and leverage your power as a gluten-free consumer!

What’s Discussed:

Misinformation in the media

  • Some coverage dissuades from adopting a gluten-free diet
  • Program/print sponsors may be corporations that depend on people eating wheat
  • Wheat/grain industry threatened by rise of gluten-free diet (33% of people in US and Canada on variation of gluten free diet)

The illusion of options in the area of food production

  • 8-10 corporations own nearly every food company
  • Nadine patronizes farmer’s markets, co-ops and local companies

Nadine’s rules for buying food products

  • Label must be clear, easy to read
  • Five or fewer ingredients
  • Must be able to picture each ingredient

The importance of reading labels

  • May be gluten in products that are typically gluten-free (i.e.: pesto, kombucha)
  • Companies are given six months to update labels after making changes
  • Barley and rye are not on list of allergens

Nadine’s story

  • Multi-system organ failure
  • Negative test for celiac disease despite being homozygous gene carrier
  • Healed quickly on a Paleo diet

Why countries with universal healthcare take celiac disease seriously

  • Early diagnosis saves money
  • Finland: 70% of people w/ celiac disease have been diagnosed
  • Italy, UK and Canada: 30-40% have been diagnosed
  • US: Less than 1% of those with celiac disease have been diagnosed

How long it takes to be diagnosed with celiac disease (for-profit vs. universal systems)

  • US: 9-15 years
  • Italy: 2-3 weeks

How doctors/experts discredit gluten-free as a fad

  • Use PWAG as derogatory term
  • Placebo effect
  • Nocebo effect (expect to feel poorly)

The inaccuracy of blood tests for celiac disease

  • 70% false negative

How companies profit from undiagnosed celiac patients

  • Products geared toward people with health issues (i.e.: compression socks, hypoallergenic sheets)

The prominence of wheat as a publicly traded commodity

  • Top export of US/Canada

The health risk associated with genetically modified wheat

The benefits of a gluten-free diet

  • Symptoms resolve
  • No longer need medicine, surgery

Nadine’s advice re: selecting gluten-free products

  • Avoid nutrient deficient gluten-free options (cheap fillers, empty carbs)
  • Focus on high quality, nutrient dense foods

How to leverage your power as a gluten-free consumer

  • Hold food producers accountable (standards, production methods)
  • ‘Vote carefully with your dollar’
  • Speak up when you see inaccurate media coverage

Why you cannot assume that gluten-free menu items are truly free of gluten

  • Uneducated restaurant staff
  • Possibility of contamination, cross-contamination

What a ‘gluten free’ designation means in labeling

  • GIG certification indicates less than ten parts per million
  • Standard in US/Europe is less than 20 parts per million

The Gluten Free RN mission

  • Educate people globally about celiac disease and non-celiac gluten sensitivity
  • Empower people to improve their health and quality of life with food

Resources:

Food Company Infographic

Gluten Intolerance Group

Connect with Nadine: 

Instagram

Facebook

Contact via Email

‘Your Skin on Gluten’ on YouTube

Books by Nadine:

Dough Nation: A Nurse’s Memoir of Celiac Disease from Missed Diagnosis to Food and Health Activism

photo by Andrea Piacquadio

The Connection Between Undiagnosed Celiac Disease and Sleep Disorders EP022


We all know how it feels to struggle through the day when you didn’t get enough sleep the night before. Your brain feels fuzzy, it’s tough to focus, and you simply aren’t the best version of yourself! The good news is, there may be a simple explanation for your sleep disorder – and there are steps you can take to eliminate the potential celiac symptoms that are keeping you up at night.

Today the Gluten Free RN shares her struggle with sleep deprivation as an undiagnosed celiac patient who also worked the night shift in the ER. Find out how she leveraged a Paleo diet and went from having a contentious relationship with sleep to becoming a champion ‘Olympic Sleeper’ who enjoys at least eight hours of rest every night!

She also covers the components of an ideal sleep space, suggestions for implementing an evening routine, and the benefits of a good night’s rest. Listen and learn about the connection between sleep disorders and undiagnosed celiac disease or non-celiac gluten sensitivity.

What’s Discussed: 

Nadine’s struggle with sleep working the night shift

  • 10 years as ER nurse working 12-hour night shifts
  • Difficult to shift into normal sleep pattern on days off
  • Circadian rhythm thrown off, felt fuzzy-brained
  • Needed extra sleep
  • Struggle to block out distractions

The correlation between undiagnosed celiac disease and sleep disorders

  • Celiac symptoms can keep you awake at night
  • May experience joint pain, muscle pain, DH, eczema, headaches, muscle twitches, restless leg syndrome

How a Paleo lifestyle can alleviate symptoms preventing sleep

How many hours of sleep you should be getting each night

  • Nadine recommends 8-10 hours of good quality sleep
  • Provides the energy for your body to carry out the tasks of daily living

The components of an ideal sleep space

  • Comfortable mattress
  • Quality sheets
  • Plenty of supportive pillows
  • Appropriate temperature
  • Fresh air, if possible
  • No electronic equipment in the room (i.e.: phones, televisions, computers)
  • Source of white noise (e.g.: fan, music)

The model evening routine

  • Limit screen time in the hours before bed
  • Try relaxing activities like reading or knitting instead
  • Take a warm bath with Epsom salt (muscle relaxer, source of magnesium)
  • Consider magnesium supplements

Celiac symptoms that can cause sleep apnea

How your body heals neurological damage in the absence of gluten

The repercussions of vitamin C deficiency

Signs of sleep disorders in children that may be caused by undiagnosed celiac disease

  • Can’t or don’t want to go to sleep, crying
  • Cranky and fatigued during the day
  • Decreased productivity
  • Learning disabilities
  • Difficulty with focus

Signs of celiac disease in children

  • Short stature
  • Anemia
  • Falling off growth chart
  • Learning disabilities
  • Seizure disorders

Why anyone with sleep disorders should get tested for celiac disease

How Nadine’s sleep issues went away on a gluten-free diet

  • Eliminated back pain, joint pain, skin discomfort, muscle pain, muscle spasms and leg cramps
  • Now she qualifies as an ‘Olympic Sleeper’

The unhealthy approach to compensating for lack of sleep

  • Take in stimulants to make it through the day (e.g.: coffee, sugar)
  • Take depressants at night to help fall asleep (e.g.: alcohol, prescription meds)
  • Everything you consume impacts your health and ability to sleep

A healthy option that functions as a sleep aid

The benefits of a good night’s rest

When to take multivitamins

  • In the morning with food
  • At night before bed (absorbed differently)

The risks associated with prescription medications

Connect with Nadine: 

Instagram

Facebook

Contact via Email

‘Your Skin on Gluten’ on YouTube

Books by Nadine:

Dough Nation: A Nurse’s Memoir of Celiac Disease from Missed Diagnosis to Food and Health Activism

canned meats

Emergency Preparedness with Nutrient Dense Foods EP015


It’s not a matter of if, but rather when you will encounter an emergency situation. And if you suffer from celiac disease or gluten intolerance, it is incredibly important that you are prepared with the appropriate supplies you will need to endure a hurricane, earthquake, blizzard, or other disaster.

 Nadine teaches you how to stock your cupboards with nutrient dense foods should you need to shelter in place for an extended period of time. She also outlines other essentials you will need to stay alive and assist others who may need help!

 What’s Discussed: 

Nadine’s experience responding to Hurricane Katrina

  • People were unprepared
  • FEMA provided only cheap filler foods

 Why it’s important to stock nutrient dense foods in case of emergency

  • Alleviates stress
  • Allows you to feed yourself for a period of time

 Nadine’s list of nutrient dense foods to stock

  • Protein bars
  • Gelatin
  • Jerky (without soy, teriyaki sauce)
  • Canned tuna, sardines
  • Canned chicken, turkey
  • Protein powder
  • Seaweed
  • Nuts
  • Pumpkin seed butter
  • Chocolate bars (80-100% cocoa, no milk)
  • Many more! Listen for the full list!

How to cope with a loss of electricity

  • Consume foods stored in freezer first
  • Prioritize eating perishables

 The importance of being self-reliant during a time of emergency

  • Helps you avoid overburdened hospitals and clinics

 Other essentials to have on hand in case of emergency

  • Multi-vitamins
  • Prescription medications (keep list in wallet/purse)
  • Can opener
  • Heat source (paper, wood)
  • Sleeping bags, pillows and blankets
  • Flashlights w/ working batteries
  • Extra batteries
  • Socks and shoes
  • First aid kit
  • Waterproof containers
  • Gluten free shampoos, lotions
  • Extra contact lenses and solution/glasses
  • Cash
  • Pet food

 How to obtain water if forced to shelter in place

  • Utilize water heater

 Resources Mentioned:

 Country Life Vitamins

 Road ID

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

Karolina Grabowska

Recommended Labs and Follow-up for Celiac Disease and Gluten Intolerance EP014


Freeze your poop and mail it to Texas!

In all seriousness, a stool analysis can offer vital information about your body’s absorption of fat and nutrients, and today the Gluten Free RN explains the significance of knowing your fecal fat score and other baseline labs that can offer clues about how gluten has adversely affected your health.

Nadine outlines recommended labs for celiac disease and gluten intolerance, discussing how each test can inform the way you tweak your diet or add necessary supplements to your health care routine. She also reviews the importance of follow-up labs to track how you are healing and help you get better, faster!

 What’s Discussed:

The importance of standardization in celiac testing and follow-up labs

Things to consider re: the results of a celiac panel

  • 70% produce a false negative
  • A positive test guarantees intestinal damage
  • Lab to lab variability can be problematic
  • Must include total IgA and IgG
  • Interpretation can be problematic
  • Ask for a hard copy of your results

Why a “gluten challenge” is dangerous

  • No medical or social reason to do so
  • May cause organ damage

Additional tests that can 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

How to obtain reimbursement for labs

Why a diet change is preferable to medication in lowering cholesterol

  • Statin drugs don’t treat the underlying cause of chronic inflammation
  • Still at risk for heart attack and stroke

What a stool analysis can tell you about your microbiome

Why you should avoid food allergy testing in the first year of a gluten-free diet

 Resources Mentioned:

 Cyrex Labs

EnteroLab 

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