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Where Gluten Hides EP046


Never assume. It makes an ass of u and me!

Not only do assumptions make you feel foolish, they can be dangerous. If you suffer from celiac disease or non-celiac gluten sensitivity, assuming that a product is safe and gluten-free can be hazardous to your health! Gluten is hiding is some surprising places, from cashews to PlayDoh, and it is in your best interest to remember that anything processed in the same facility with wheat is at risk for contamination.

Today the Gluten Free RN shares the many places she has discovered gluten ‘hiding in plain sight,’ including personal care products, olive oil and communion wafers. She offers advice around supporting companies that are 100% gluten-free, alternatives to gluten-containing products, and choosing nutrient-dense foods that will help you heal.

Nadine also covers labels, discussing why you can’t necessarily trust the information you find there, the many different names for wheat to look out for, and why you should take a look even when the product should be naturally gluten-free. She reveals some of her favorite gluten-free products as well as several companies that are committed to maintaining gluten-zero production facilities. Listen in and learn how to make good choices—without giving up the activities you love. Eating gluten-free doesn’t have to be a punishment, and the Gluten Free RN can’t wait to share!

What’s Discussed: 

Why Nadine sticks with clearly marked gluten-free products

Some of the surprising places gluten hides

  • Olive oil, kombucha, hard ciders, smoothies and other drinks
  • Alcohol and malted beverages
  • Lipsticks, lip balms and gloss
  • Communion wafers
  • Supplements and medications
  • Play-Doh

Why you can never assume a product is naturally gluten-free

  • Anything processed in same facility with wheat is at-risk for contamination

Why Nadine encourages the support of companies striving to be 100% gluten-free

  • Don’t have to worry about safety
  • Sends message to companies with unclear labels

The many different names for wheat to watch out for on labels

Alternatives to gluten-containing products like bread, crackers and chocolate

Why you can’t trust labels

  • Companies have six months to change a label after ingredients, info has changed
  • Must read label every time buy product, refill prescription medication

The cumulative effect of consuming products that contain just under 20 ppm of gluten

Why Nadine urges you to be picky

  • Don’t settle for cheap filler foods
  • Only nutrient-dense foods will help you heal

Resources:

Desert Essence

Savonnerie

Schmidt’s Naturals

Mary’s Gone Crackers

Jilz Crackers

eatingEVOLVED

PASCHA Chocolate

Enjoy Life Foods

Ground Breaker Brewing

Red Apple Lipstick

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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The Psychology of Eating Gluten Free EP045

We all just want to fit in, so it can be embarrassing to have special needs when it comes to your diet. Whether you are gluten-free, Paleo, or suffering from food allergies, a feeling of isolation is not uncommon. After all, you have to eat differently from the rest of your friends, family, or colleagues—and that makes you stand out. You run the risk of being perceived as picky or annoying, when the truth is that certain foods are toxic to your system!

Today the Gluten Free RN speaks to the psychology of eating gluten-free, explaining the sense of disbelief many gluten-sensitive individuals feel when the food they love turns out to be poison. She discusses ‘food ideology’ and why changing your diet can be so challenging.

Nadine also covers the doubt, mocking, and even anger that celiac and gluten-sensitive individuals face, offering suggestions for building connections with a like-minded, gluten-free community. Listen in as she outlines her approach to dating on a Paleo diet and reassuring family and friends who find a gluten-free diet too restrictive for kids. Learn to be your own best advocate and resist the social pressure to eat the standard American diet!    

What’s Discussed:

Why gluten sensitive patients must be willing to experiment

  • Learn how body works best
  • Identify foods that allow body to heal
  • Pinpoint foods that cause symptoms

A downtown Corvallis business owner’s testimonial

  • Couldn’t get doctor to test for celiac disease
  • Family gave hard time
  • Gluten-free for year
  • Bloating, abdominal pain went away
  • Head clear

How to research the possibility that gluten is causing your symptoms

  • Search PubMed
  • Use both spellings (celiac, coeliac)

Why people are resistant to diet change

  • Subscribe to particular food ideology
  • Media, social pressure to eat standard American diet

The difficulty around getting a celiac diagnosis

The value of preventative medicine

Dating on a gluten-free diet

  • Look for someone open to new ideas
  • Nadine’s partner is supportive, willing to change
  • On food path together
  • Health benefits whether celiac or not

The human need to be part of a community

  • Celiac patients may feel isolated from family, at work/school
  • Find ‘your people’ (gluten-free support group, cross-fit gym)

The global shift to a Western diet

  • Export fast food to world
  • Increased consumption of wheat, barley, rye and oats

Why Nadine recommends a Whole30 diet

  • Remove all grains, dairy, alcohol and sugar
  • Eat meat and fish, nuts and seeds, fruits and vegetables
  • Allows body to reboot
  • Evaluate how you feel

The narcotic-like effect of gluten on the brain

  • Comfort foods (pasta, pizza) contain wheat, dairy
  • Cause chemical reaction in brain

Nadine’s recent experience in hospitals

  • Only nutrient-deficient, packaged foods available
  • Offerings toxic, full of sugar

Nadine’s rules around ingredients in packaged foods

  • Five ingredients or less
  • Must be able to picture every ingredient

Why people on a gluten-free diet are reluctant to tell others

  • Don’t want to be difficult, needy
  • Don’t want to call attention, be seen as ‘other’
  • May be questioned or face anger, mocking
  • Demoralizing to go to restaurant, grocery store (can’t eat 90%)

How to approach neighbors or family who view a gluten-free diet as too restrictive for kids

  • Ensure that kids are healthy, thriving
  • Let them know ‘not missing out’

The psychology of denial

  • Some celiac patients believe okay to cheat
  • Bread crumb, dusting of flour can cause autoimmune response

Nadine’s opposition to a gluten challenge

  • Can cause organ damage
  • Some never recover

The genes that indicate a predisposition to celiac disease

  • HLA-DQ2
  • HLA-DQ8

Resources:

 

Books by Dr. Rodney Ford

PubMed

The Whole30 Program

Nima Sensor

EZ Gluten Test Strips

Connect with Nadine: 

Instagram

Facebook

Contact via Email

‘Your Skin on Gluten’ on YouTube

Melodies of the Danube Gluten-Free Cruise with Nadine

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Staying Healthy in the Hospital with Celiac Disease EP044

Hospitalization is nearly always the result of a sudden, unexpected event. So how do you plan ahead to keep yourself safe in the event that a health emergency lands you in the nearest emergency room? What steps can you take to stay healthy in the hospital as a celiac or gluten-sensitive patient?

Thanks to a listener suggestion and Nadine’s recent experience with a client recovering from surgery, the Gluten Free RN is addressing the cross-contamination risk in hospital kitchens and the nutrient-deficient foods available in hospital gift shops and vending machines. She also covers the responsibilities of the pharmacist to ensure that medications are gluten-free as well as resources you can use to verify that your prescriptions are safe.

Listen in as Nadine explains the significance of having an advocate with you at the hospital, who can prevent inadvertent gluten exposure and bring in the nutrient-dense food you need to heal. Learn how to communicate your needs as a celiac patient to resistant doctors, nurses, pharmacists and RDs, and plan ahead to stay safe and healthy—even when you’re in the vulnerable position of being in the hospital.    

What’s Discussed: 

Why celiac patients should be skeptical of gluten-free menus in the hospital

  • Nadine has patient in hospital for hip surgery
  • Found out food all cooked on same grill
  • Risk of cross-contamination very high
  • Gluten protein extremely heat stable
  • Made arrangements to bring in safe food

The quality of food available in hospitals

  • Gift shops, kitchens and vending machines ‘abysmal’
  • Often nutrient-deficient, high in gluten
  • Gas station lineup of junk food

How to verify that medications are gluten-free

The role of the pharmacist in providing gluten-free medication

  • Job to ensure safety
  • Should never say ‘don’t have time,’ pass responsibility to patient
  • Must check prescriptions, over-the-counter meds, topical treatments
  • Enteral supplements (through tube) must be checked as well

What you can do to communicate your needs to hospital staff

The significance of having an advocate

  • Friend/family member, fellow support group member or paid advocate
  • Provide access to safe food brought in (too many variables in hospital)
  • Can speak for you when vulnerable (e.g.: crackers after surgery)
  • Assign person before in position to need (sudden, unexpected events)

Gluten-free options for patients on a liquid or soft food diet

  • Bone broth
  • Soup with vegetables

 The role of nutrient-dense food in healing the body

  • Bring 100% gluten-free ‘safe stash’ to hospital
  • Refer to Nadine’s list of nutrient-dense options
  • Remember products labeled gluten-free = < 20ppm (not zero)

The Catch 22 of gluten and hospitals

  • Getting hit with gluten can put in hospital (i.e.: dehydration, GI bleed)
  • Difficult to stay gluten-free in hospital
  • Already at-risk to get sicker

How antibiotics affect your system

  • Wipe out good normal flora along with bad bacteria
  • Need good probiotics, fermented foods to reestablish microbiome

 

Resources:

Gluten Free Drugs Website

Dough Nation by Nadine Grzeskowiak

Emergency Preparedness with Nutrient Dense Foods

Gluten Free RN Episode 15

GIG Resource: Hospital Stays Made Safe

Gluten Intolerance Group of North America

Connect with Nadine: 

Instagram

Facebook

Contact via Email

‘Your Skin on Gluten’ on YouTube

Melodies of the Danube Gluten-Free Cruise with Nadine

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Eating Disorders and Celiac Disease EP043

Imagine being admitted to a psychiatric hospital and accused of being a pathological liar because no matter how carefully you follow the high-carb diet prescribed by your physicians, you continue to lose weight. In the introduction to his book, How Doctors Think, Dr. Jerome Groopman shares the story of a woman who was misdiagnosed with anorexia nervosa. The patient was ready to give up when one last doctor discovered villous atrophy and determined that it was celiac disease—not an eating disorder—that was causing her malnourishment.

Today the Gluten Free RN explores the reasons why celiac disease and gluten sensitivity are often mistaken for anorexia nervosa. She shares the limited research in the field, as well as the symptoms related to malnourishment that may be caused by gluten, including several mental health disorders.

Listen in as Nadine covers the use of PWAG (people who avoid gluten) as a derogatory term and shares her frustration with labels like ‘orthorexia nervosa’ which imply that gluten-sensitive patients are obsessed with healthy food: ‘I avoid gluten like the plague because it is, in fact, the plague for those of us who have celiac disease.’   

 What’s Discussed: 

The use of PWAG as a derogatory term

  • ‘People who avoid gluten’
  • Half of people in US
  • Implies food crazed/obsessed

 The new term orthorexia nervosa

  • Refers to obsessive behavior in pursuit of healthy diet
  • Not clinical term/official diagnosis

 The concept of food as medicine

 Anecdotal evidence of celiac disease misdiagnosed as anorexia

  • Introduction of Dr. Jerome Groopman’s book, How Doctors Think
  • Woman admitted to psychiatric hospital (thought to be pathological liar)
  • Continued to lose weight despite prescribed high-carb diet
  • Biopsy revealed Marsh 4 damage
  • Gluten-free diet resolved symptoms

 Why celiac disease and gluten sensitivity are misdiagnosed as eating disorders

  • Inability to absorb nutrients results in severe weight loss, malnutrition
  • Become picky eaters because food causes suffering
  • Practice food avoidance

 The prevalence of celiac disease

  • 3% of the US population
  • Millions undiagnosed

 How gluten affects a celiac patient

  • Gluten protein as neurotoxin
  • Damages intestines
  • Impairs immune system
  • Causes inflammation
  • Heart attack
  • Stroke
  • Joint, muscle pain
  • Any -itis

 Nadine’s recommended variation of a Paleo diet

  • Local, organic, whole foods
  • 100% grass-fed beef (no antibiotics/hormones)
  • Nutrient dense

 The study of celiac disease and eating disorders

  • Very few research studies in last 11 years
  • Handful of case studies in literature

 The issues associated with malnourishment

  • Little body fat
  • Cachectic
  • Hormonal disruption
  • Thyroid issues

 The anger and contempt Nadine has experienced as the Gluten Free RN

  • Gluten, dairy associated with comfort food
  • People resistant to give up

 The mental health issues associated with malnourishment

  • Significant cognitive impairment
  • Hypoxia
  • Brain atrophy (shrinking)

 The effect of gluten on epithelial tissue

  • Leaky skin, lungs, blood vessels, blood-brain barrier
  • Causes increased/decreased blood pressure, POTS

 The consequences of gluten getting through the blood-brain barrier

  • Causes hypoxia
  • Brain needs oxygen to work appropriately
  • Brain fog (irritability, anger)
  • Early onset dementia

 The shocking statistics around psychotropic medication in the US

  • Up to 50% of population on anti-depressants, mood-altering drugs
  • Gluten-free diet could help ‘get brain back’

 Nadine’s advice for parents of children who miss multiple days of school

  • Could be undiagnosed celiac disease
  • No downside to clinical trial of gluten-, dairy-free diet
  • Consider Whole30 Diet (eliminate sugar, grains, legumes)

 The process of a gluten detox

  • Gluten has narcotic-like effect on brain
  • May feel worse before you feel better
  • One day to two months

 The benefits of maintaining a gluten-free diet

  • Anxiety goes away
  • Mood improves
  • Able to sleep
  • Pain resolves
  • Heal intestines, epithelial tissue
  • Reduce inflammation
  • Heal immune system
  • Brain receives necessary oxygen

 The foods Nadine recommends as part of a super-good, high-fat diet

  • Avocados
  • Olive oil
  • Coconut oil
  • Coconut milk
  • Hemp milk

 Why Nadine chooses not to eat if there is any risk of gluten contamination in her food

 The places where gluten hides

  • Single bread crumb
  • Dusting of flour
  • Oil French fries cooked in
  • Personal care products

Resources:

 

How Doctors Think by Jerome Groopman, MD

Dr. Groopman’s NPR Interview

“The Interaction Between Eating Disorders and Celiac Disease: An Exploration of 10 Cases” in the European Journal of Gastroenterology & Hepatology

“Orthorexia and Anorexia Nervosa: Two Distinct Phenomena? A Cross-Cultural Comparison of Orthorexic Behaviours in BMC Psychiatry

“Predictors of Orthorexic Behaviours in Patients with Eating Disorders: A Preliminary Study” in BMC Psychiatry

“Eating Disorders and Celiac Disease: A Case Report” in The International Journal of Eating Disorders

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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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

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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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

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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Multiple Sclerosis and Celiac Disease EP040

According to the University of Chicago Celiac Disease Center, 10% of MS patients also suffer from celiac disease. Studies conducted in Italy and Spain uncovered a significant increased prevalence of celiac disease in first-degree relatives of MS patients, 18% and 32% respectively. Additional research has identified situations in which celiac disease mimicked other neurological disorders such as MS and ALS.

 With evidence like that, it is definitely worth it to further explore the relationship between MS and celiac disease. Today, the Gluten Free RN investigates whether MS and celiac disease are similar, related, or perhaps the same thing, as she shares case studies from the literature and her own experience.

Nadine discusses the story of Dr. Terry Wahls, explaining how she was able to resolve her symptoms of MS with a variation of a Paleo diet. She outlines the analogous symptoms of MS and celiac cerebellar ataxia, the neurological damage caused by gluten, and how malabsorption of nutrients caused by intestinal damage can extend to medication. Listen and learn how Nadine and others have resolved symptoms of MS and other neurological disorders on a gluten-free diet!

What’s Discussed: 

Nadine’s MS scare

  • Bouts with falling, dragging feet
  • Numbness, tingling (neuropathy)
  • Symptoms disappeared after adopting gluten-free diet
  • Takes two to three years to resolve neurological symptoms

Dr. Terry Wahls’ story

  • Diagnosed with MS, confined to wheelchair
  • Continued to research condition
  • Adopted version of Paleo diet
  • Now walks without cane, rides bike again
  • Conducts seminars to share how healed mitochondria

The commonalities between celiac disease and MS

  • Both autoimmune issues
  • Studies necessary to determine if conditions are similar, related, or the same

How celiac disease affects the body

  • Triggered by ingestion of gluten
  • Causes villous atrophy, cryptic hyperplasia in small intestines, damage to immune system
  • Primarily neurological disorder

The symptoms of celiac cerebellar ataxia

  • Poor balance
  • Hard to distinguish where body is in space
  • Trip, stumble or fall
  • Related to vision

The multi-organ manifestations of celiac disease in the central nervous system

  • White matter lesions
  • Inflammatory cerebral spinal fluid syndrome
  • Sinus venous thrombosis
  • Epilepsy, seizure disorders
  • Cerebellar pontine atrophy
  • Encephalopathy
  • Myelopathy
  • Dementia
  • Gluten ataxia
  • Migraines, headaches
  • Depression, anxiety
  • Cerebellar ataxia

Nadine’s patient who wasn’t responding to MS medication

  • Nadine recommended celiac testing
  • Panel negative, but gene carrier
  • Already adopted gluten-free diet
  • Fewer medications necessary
  • Hope to decrease, discontinue meds
  • Malabsorption issues extend to medications, could stem from undiagnosed celiac disease

The 2014 study in Vienna regarding celiac disease and MS

  • Concluded that celiac disease may mimic MS
  • Celiac disease may be present despite absence of anti-gliadin antibodies
  • If patient history indicates gastrointestinal issues, celiac disease should be considered even if CSF and MRI findings suggest MS

The new evidence around seronegativity in celiac disease

  • Most labs only test for tissue transglutaminase 2
  • Transglutaminase 6 is specific for neurological damage caused by gluten

The 2014 Italian study of the genetic overlap between celiac disease and MS

  • Sites significant increased prevalence of celiac disease in MS first-degree relatives (18%)
  • Recommends celiac testing in MS patients who aren’t responding to MS treatment or present with ataxia

The association between MS and celiac disease as reported by the University of Chicago Celiac Disease Center

  • Approximately 10% of those who have MS also have celiac disease

The genes that indicate a predisposition to celiac disease

  • HLA-DQ2
  • HLA-DQ8

The 2013 Iranian case study of a celiac patient diagnosed with MS

  • 37-year-old woman with history of chronic abdominal pain
  • Diagnosed with celiac disease, adopted gluten-free diet
  • Became ataxic, met with neurologist
  • MRI indicated multiple sclerosis
  • Nadine argues that patient likely re-exposed to gluten

How gluten acts as a neurotoxin

  • Pastor exposed to gluten in cookies had acute neurological event
  • Shaking, tremors (similar to stroke)

The 2007 Oxford case study of celiac disease mimicking ALS

  • 44-year-old man with progressive right-sided spastic hemiparesis (muscle wasting)
  • Remote family history of celiac disease
  • Strict gluten-free diet resolved most symptoms

Why patients with neurological symptoms should be tested for celiac disease

  • The anti-gliadin antibody is excellent biomarker for gluten sensitivity

Why it is acceptable to adopt a gluten-free diet if your antibody test is negative for celiac disease

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

  • Gluten-, dairy-free
  • Whole food
  • Low carb, super-good high fat

The increased prevalence of celiac disease in MS patients revealed in a 2011 study

  • Increased prevalence found in eight of 72 MS patients (11.1%)
  • Also in first-degree relatives (13/126 or 32%)
  • Advises increased efforts aimed at early detection and dietary treatment

The fundamentals of MS

  • Chronic disease of unknown etiology
  • T-cell mediated antibody response
  • Leads to demyelination of central nervous system
  • Associated with autoimmunity (body attacking itself)
  • Damage to enteric nervous system can lead to constipation

How to conduct your own research around celiac disease and neurological disorders

  • Celiac researcher Dr. Marios Hadjivassiliou

How long it takes to heal on a gluten-free diet

  • Villous atrophy heals in six months to one year
  • Neurological damage takes two to four years

The nutrients a celiac patient is missing that contribute to neurological issues

  • B vitamins
  • Trace amounts of copper
  • Magnesium
  • Zinc

The autoimmune symptoms Nadine resolved/reversed with a gluten-free diet

  • MS symptoms
  • Graves’ disease
  • Positive ANA panel

Why it’s important for celiac patients to work with educated practitioners who understand functional medicine

Resources:

Dr. Terry Wahls’ TED Talk

The Wahls Protocol: A Radical New Way to Treat All Chronic Autoimmune Conditions Using Paleo Principle by Terry Wahls MD

“Celiac Disease with Cerebral and Peripheral Nerve Involvement Mimicking Multiple Sclerosis” in the Journal of Medicine and Life

“Celiac Disease in Multiple Sclerosis: A Controversial Issue” in the International Journal of Neurology and Neurotherapy

University of Chicago Celiac Disease Center MS Info

“Multiple Sclerosis or Neurological Manifestations of Celiac Disease” in Advanced Biomedical Research

“A Case of Celiac Disease Mimicking Amyotrophic Lateral Sclerosis” in Nature Clinical Practice Neurology

“Prevalence of Celiac Disease in Multiple Sclerosis” in BMC Neurology

“A Case of Concurrent Multiple Sclerosis and Celiac Disease” in Govaresh

“Neurological Disorders in Adult Celiac Disease” in the Canadian Journal of Gastroenterology

“A Case of Multiple Sclerosis and Celiac Disease” in Case Reports in Neurological Medicine

 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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Dental Issues and Celiac Disease EP039

Did you know that it is possible to diagnose celiac disease with a smile?

Damage from gluten starts in the mouth, and today the Gluten Free RN explores the important role dentists can play in identifying undiagnosed celiac disease. She outlines the symptoms of celiac disease that present in the mouth, the follow-up questions dentists should ask when they notice dental enamel defects or aphthous ulcers, and the nature of the tongue as an indicator of overall health.

This episode covers how the plastics in orthodontic retainers might contain gluten and what to do if you are accidentally exposed. Nadine also explains the relationship between fat-soluble vitamins and celiac disease, as well as the nutrient deficiencies a potential celiac patient should test for. You’re never fully dressed without a smile, so listen in to understand how to keep your mouth healthy—and prevent the accumulation of complications from celiac disease with a whole food, gluten-free diet!

What’s Discussed: 

How the GI tract functions

  • Starts at mouth, ends at rectum
  • Allows us to consume food, liquid
  • Only extract what body needs
  • Expel the rest

How damage from gluten presents

  • Malabsorption of nutrients
  • Inflammation
  • Autoimmune issues
  • Type 1 diabetes
  • ALS
  • Lupus
  • MS
  • Sjögren’s
  • Leaky gut

How dentists can play an important role in identifying undiagnosed celiac disease

The symptoms of celiac disease that present in the mouth

  • Dental enamel defects
  • Aphthous ulcers (canker sores)
  • Cheilosis (cracks, open sores where upper and lower lip join)
  • Dry, cracked lips
  • TMJ—temporal mandibular joint disorder
  • Pain where jaws meet
  • Inflammation of the jaw
  • Clicking
  • Lock jaw
  • Mouth pain, burning
  • Oral lesions
  • Tongue pain, tingling
  • Redness, swelling of the tongue
  • Tongue sores
  • Changes in taste, smell
  • Diminished sensory input
  • Dry mouth
  • Sore throat
  • Difficulty swallowing
  • Increased thirst
  • Bleeding gums
  • Delayed eruption of teeth
  • Pyrosis
  • Oral lichen planus
  • Glossitis (inflammation of tongue)
  • Clearing throat
  • Sinus infections
  • Redness, swelling of the uvula

How Nadine treats gluten exposure

  • Activated charcoal
  • Drink water

The grains to look for in personal care products (e.g.: lip balm)

  • Wheat
  • Barley
  • Rye
  • Oats

The relationship between fat soluble vitamins and celiac disease

  • Gluten causes malabsorption
  • Vitamins A, D, E and K are fat soluble
  • Under 40 in vitamin D may indicate deficiency in all

How we tested for celiac disease in children in the early 20th century

  • Fecal fat score
  • Pale stool that floats suggests malabsorption of A, D, E and K

Why parents should be tested for celiac disease prior to pregnancy

The fetal development issues that may present if an expectant mother is unable to absorb nutrients

  • Dental enamel defects
  • Smaller jaw formation
  • Smaller airway passages

Why Nadine advocates for a mass screening

How gluten in plastics, personal care products can prevent celiac patients from healing

The questions dentists should ask when they notice dental enamel defects, aphthous ulcers

  • Other clinical celiac symptoms (abdominal pain, diarrhea, weight loss, anemia, fatigue)
  • Associated disorders (type 1 diabetes, thyroiditis, etc.)
  • Family history of celiac disease

Why we need to get much better at recognizing celiac signs and symptoms

  • Even in Canada, diagnosis takes 11.7 years

Why Eastern medicine examines the tongue as an indicator of overall health

The genes that indicate a predisposition to celiac disease

  • HLA-DQ2
  • HLA-DQ8

Why it is acceptable to adopt a gluten-free diet if your antibody test is negative for celiac disease

The deficiencies a potential celiac patient should test for

  • Calcium
  • Magnesium RBC
  • Vitamin D
  • Zinc
  • Folic acid

Why thrush may be an indicator of celiac disease or gluten sensitivity

Why one negative test for celiac disease doesn’t rule anyone out

The importance of early diagnosis

  • Symptoms accumulate over the years

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

  • Whole food
  • Focus on local, fresh
  • 100% grass-fed meat (no antibiotic, no hormone)
  • Fish and eggs
  • Nuts and seeds
  • 100% organic fruits and vegetables

Resources:

 “An Orthodontic Retainer Preventing Remission in Celiac Disease”  in Clinical Pediatrics

“Oral Manifestations of Celiac Disease: A Clinical Guide for Dentists” in the Journal of the Canadian Dental Association

Gluten Free RN Podcast EP027: Type 1 Diabetes and Celiac Disease

“The Association Between Celiac Disease, Dental Enamel Defects, and Aphthous Ulcers in a United States Cohort” in the Journal of Clinical Gastroenterology

“Small-Bowel Changes in Recurrent Ulceration of the Mouth” in Hepatogastroenterology

“Oral Signs and HLA-DQB1*02 Haploytypes in the Celiac Paediatric Patient: A Preliminary Study” in Autoimmune Diseases

“The Oral Manifestations of Celiac Disease: Information for the Pediatric Dentist” in Pediatric Dentistry

“Oral Aphthous Ulcers and Dental Enamel Defects in Children with Coeliac Disease” in Acta Paediatrica

“Oral and Dental Manifestations of Celiac Disease” in the New York State Dental Journal

“Jejunal Mucosal Abnormalities in Patients with Recurrent Aphthous Ulceration” in The British Medical Journal

“Dental Enamel Defects in Adult Coeliac Disease” in the European Journal of Internal Medicine

“Screening for Celiac Disease in Children with Dental Enamel Defects”  in ISRN Pediatrics

“Celiac Disease Associated with Recurrent Aphthae” in Gut

“Importance of Oral Signs in the Diagnosis of Atypical Forms of Celiac Disease” in Recenti Progressi in Medicina

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, Suicide, Morbidity and Mortality EP038

People are suffering. From a feeling of hopelessness. From depression and anxiety. Add to that a despair that no one supports them, and you have a desperate individual at an increased risk of committing suicide.

This topic hits close to home for Nadine, as she lost a nephew to suicide in 2007. Ian struggled with addiction issues, and he took his life at the age of 19. Because her family is predisposed to celiac disease, Nadine wonders if undiagnosed celiac disease may have been partially to blame for her nephew’s issues. Today she explores the mental health disorders that are associated with gluten getting through the blood-brain barrier. She also explains how undiagnosed celiac disease puts patients at an increased risk for morbidity, and stresses the fact that celiac disease can—and will—kill you if it goes untreated.

Listen in as the Gluten Free RN tells her own story of improved mental health on a gluten-free diet. She also covers the types of cancers that might be prevented by going gluten-free, the connection between AFib and celiac disease, and how dermatitis herpetiformis affects patients. Listen and learn the best diet to help you get better, faster, and why medical professionals need to pay more attention to the intestines!

What’s Discussed: 

How to define morbidity and mortality

  • Morbidity = sickness
  • Mortality = death
  • People with undiagnosed celiac disease have increased risk for morbidity

How morbidity presents itself in undiagnosed celiac patients

  • Chronic anemia
  • Fatigue
  • Osteoporosis
  • Failure to thrive, grow
  • Infertility
  • Thyroid issues
  • Autoimmune disorders
  • Type 1 diabetes
  • Lupus
  • MS
  • Sjögren’s

Information from the World Health Organization (WHO)

  • Diarrheal diseases are #1 killer of children
  • Only funded one celiac study
  • 1:19 rate in pediatric patients of Sahrawi descent

The prominent mental health issues associated with celiac disease

  • Depression
  • Anxiety
  • Anti-social behavior
  • Suicide

How removing gluten from her diet improved Nadine’s mental health

  • Brain fog went away
  • ‘Got brain back’
  • Embrace all life has to offer
  • Freeing to know cause of symptoms

The grains that contain gluten

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

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

  • Whole food
  • Focus on local, fresh
  • 100% grass-fed meat (no antibiotic, no hormone)
  • Fish and eggs
  • Nuts and seeds
  • 100% organic fruits and vegetables

Nadine’s experience with celiac disease

  • Multi-system organ failure, seven auto-immune disorders
  • Dermatitis herpetiformis
  • Diagnosed by dermatologist
  • Tests negative, but HLA-DQ2.5 gene carrier (both parents)

The connection between AFib and celiac disease

  • AFib puts patient at risk for stroke, sudden death
  • Check for magnesium RBC deficiency
  • Can be corrected with gluten-free diet
  • Resolve without pharmaceuticals

How dermatitis herpetiformis affects patients

  • Extremely painful, itchy skin
  • Manifestation of celiac disease
  • Suicide rate higher in patients with DH
  • Dapsone alone will not heal
  • Must also go gluten-free
  • Prolonged use of Dapsone is toxic to liver (bowel cancer, lymphoma)

The cancers that are potentially preventable on a gluten-free diet

  • Lymphoma
  • Small intestinal adenocarcinoma
  • Esophageal cancer
  • Oral pharyngeal

The genes that indicate a predisposition to celiac disease

  • HLA-DQ2
  • HLA-DQ8

Other disorders that could be mitigated by a gluten-free diet

  • Chronic anemia
  • Osteoporosis
  • Osteomalacia
  • Thyroid disorder
  • Dementia
  • Alzheimer’s
  • MS
  • Type 1 diabetes

How long it takes to receive celiac diagnosis in US

  • 9-15 years

The risks for patients diagnosed with celiac disease in childhood

  • Threefold increased risk of death (suicide, accidental death, violence)

Nadine’s research around celiac testing in autopsy

  • Couldn’t get straight answer from medical examiner (state of Oregon)
  • Study conducted in 1974 concluded that despite systematically positive response to gluten-free diet, some patients ended up with lymphoma

How Nadine periodically gives her system a detox

  • Limited fast (three to seven days)
  • Give organs, immune system a rest

Why medical professionals should give more attention to the intestines

  • Vast majority of signs, symptoms originate in intestines
  • 70-90% of immune system in intestines
  • Homocysteine levels higher in newly diagnosed celiac patients, related to other health issues

The issues that can result from undiagnosed celiac disease

  • Heart attack
  • Stroke
  • Appendix removed
  • Gall bladder removed

The definition of refractory celiac disease

  • Intestines don’t heal even on gluten-free diet
  • Sometimes caused by continued exposure to trace amounts of gluten
  • Some patients past point of being able to heal

Why it’s crucial to remove all gluten from the environment

  • Celiac patients should feel safe where live, work and go to school
  • Even trace amounts cause continued symptoms, early death
  • Takes an emotional toll to be hypervigilant, mocked by loved ones

The connection between undiagnosed celiac disease the despair that leads to suicide

  • No hope of getting better
  • Don’t feel supported, believed (celiac is real disease)
  • Depression, anxiety and other mental health disorders
  • More vulnerable if undiagnosed and enduring abusive relationship

What happens when gluten gets through a leaky blood-brain barrier

  • Inflammation of the brain
  • Hypoxia (decreased oxygen flow)
  • Low end—brain fog, anxiety, depression, fatigue
  • High end—bipolar disease, antisocial behavior, learning disabilities, schizophrenia

The risks associated with eating traditionally grown fruits and vegetables

  • Glyphosate in Roundup causes leaky gut

The goals of the first six months on a gluten-free diet

  • Remove all gluten
  • Allow villi to grow back
  • Heal inflammation
  • Repair immune system

Resources:

Celiac Disease and Gluten Sensitivity in Down, Turner and Williams Syndrome

WHO Celiac Disease Study

“Necropsy Studies on Adult Coeliac Disease” in the Journal of Clinical Pathology

“Mortality in Celiac Disease” in Gastroenterology

“The Global Burden of Celiac Disease” in PLoSONE

“The Unknown Burden and Cost of Celiac Disease in the US”  in Expert Review of Pharmacoeconomics and Outcomes Research

“Long-Term Mortality in People with Celiac Disease Diagnosed in Childhood Compared with Adulthood” in the American Journal of Gastroenterology

“Increased Risk of Atrial Fibrillation in Patients with Coeliac Disease: A Nationwide Cohort Study” in the European Heart Journal

“Increased Suicide Risk in Coeliac Disease—A Swedish Nationwide Cohort Study” in Digestive and Liver Disease

“The Burden of Celiac Disease and the Value of Having It Diagnosed” by Fredrik Norström of UMEA University

“Complications of Coeliac Disease: Are All Patients at Risk?”

“Evidence-Informed Expert Recommendations for the Management of Celiac Disease in Children” in Pediatrics

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