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Gluten Free Products EP048

The increasing number of gluten-free products on the market can be both a blessing and a curse. Yes, it gives us more options, but are those options truly safe and healthy?

Today the Gluten Free RN goes over the important questions to ask about the products you consume, explaining how the foods promoted by some gluten-free groups may be influenced by their corporate sponsors. She reminds us why we can’t simply trust the products labeled ‘gluten-free’ or ‘gluten removed,’ discussing the lack of oversight and standardization around classification and the cumulative effect of consuming a number of products that are just under the 20 ppm cutoff.

Nadine also shares a list of companies she trusts to consistently produce gluten-free products and offers suggestions around new food options we might explore. Listen in and learn to choose the nutrient-dense foods that will help your body heal!

What’s Discussed:

The importance of questioning the source of your information

  • Gluten-free groups take money from sponsors (corporations, pharmaceutical companies)

 Why Nadine avoids the ‘gluten removed’ label

 The questions to ask about gluten-free products

  • Is it manufactured in a designated facility?
  • From where do they source the ingredients?
  • Do they batch test those ingredients?

 The cumulative effect of eating many products just under 20 ppm

 Reliable companies that consistently produce truly gluten-free products

 The challenges faced by newly diagnosed celiac patients

  • Feeling different
  • Loss of convenience

 Why Nadine avoids gluten-free breads

 New food options to explore as a celiac patient

 Why Nadine recommends reevaluating the foods you consume

  • Ensure they are nutrient dense, don’t cause inflammation

 Why you can’t trust product labels

  • Corporations given six months to update after ingredients change
  • Not required to test products labeled gluten-free (no oversight, standardization)

 Nadine’s rules around choosing products

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

Resources:

Canadian Celiac Association

The Gluten Dude on Facebook

Ground Breaker Brewing

The Gluten Intolerance Group of North America

Enjoy Life Foods

Glutino

Namaste Foods

Pamela’s Products

Jilz Crackers

Lundberg Family Farms

Mary’s Gone Crackers

Casabi Crackers & Flatbread

Jackson’s Honest

Kettle Brand

Nima Sensor

EZ Gluten Test Strips

Applegate

Beeler’s Pure Pork

Hempler’s

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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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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Men and Celiac Disease EP035

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

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

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

What’s Discussed:

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

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

The addictive nature of gluten

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

Case study of man diagnosed with pancreatitis

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

Common symptoms of celiac disease in men

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

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

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

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

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

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

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

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

Doug’s story

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

How gluten causes excessive gas, explosive diarrhea and constipation

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

Nadine’s advice around nutrition for gluten sensitive patients

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

The benefits of bacon

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

Why men may be more resistant to diet change

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

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

Why subsidized ingredients are found in countless products

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

The social challenges for men with celiac disease

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

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

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

Resources:

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

Connect with Nadine: 

Instagram

Facebook

Contact via Email

‘Your Skin on Gluten’ on YouTube

Melodies of the Danube Gluten-Free Cruise with Nadine

Books by Nadine:

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

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21 Important Facts About Celiac Disease EP033

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

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

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

 What’s Discussed: 

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

 

Resources:

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

21 Important Celiac Disease Facts You Need to Know…

Gluten Free Works

Connect with Nadine: 

Instagram

Facebook

Contact via Email

‘Your Skin on Gluten’ on YouTube

Melodies of the Danube Gluten-Free Cruise with Nadine

Books by Nadine:

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

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Why a Gluten Challenge is NOT Recommended EP032

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

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

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

What’s Discussed: 

The gluten free lifestyle

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

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

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

 The advantages of living in the Northwest US

 Nadine’s recommendations re: food options

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

 The misguided reason why people do a gluten challenge

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

 The value of a gluten-free diet in preventative medicine

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

 What it means to do a gluten challenge

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

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

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

 The risks vs. rewards of enduring a gluten challenge

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

 Why Nadine would never do a gluten challenge

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

  • Often misinterpreted, read incorrectly
  • Damage can be patchy

 Why an antibody panel can be unreliable in identifying celiac disease

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

 How long it takes to obtain celiac diagnosis

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

 Nadine’s advice around celiac testing

 The enduring nature of celiac disease

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

 Nadine’s nutrition guidelines for celiac patients

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

 Nadine’s work as a patient advocate

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

Resources:

Whole Foods

Natural Grocers

First Alternative Co-op

LifeSource Co-op

Cyrex Laboratories

LabCorp

EnteroLab

Connect with Nadine: 

Instagram

Facebook

Contact via Email

‘Your Skin on Gluten’ on YouTube

Melodies of the Danube Gluten-Free Cruise with Nadine

Books by Nadine:

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