gfrn_podcast_banner

My Health and Lessons for You EP057


Two and a half years ago, Nadine was inadvertently hit with gluten—three times in a row. In the past, it had taken about ten weeks for her symptoms to resolve after an accidental exposure, but this time they stuck around. It started with feeling cold. Then she began experiencing abdominal distention and pain.  Her dermatitis herpetiformis returned, she was plagued with sinus congestion, and she was gaining weight. Most concerning of all, she developed pulmonary edema, a condition caused by excess fluid in the lungs.

Today, the Gluten Free RN is getting real, revealing the health struggles she has been dealing with since 2015. She explains the circumstances that led to her accidental gluten exposure and recounts the ten scary nights she spent in a recliner, forced to sit up in order to breathe.

Nadine takes us along on her global search for the answers that began with a practitioner in Thailand and a tiny container of damp rash lotion, and ended with a diagnosis of myxedema from a naturopath here in the States. Nadine discusses how those three consecutive hits of gluten targeted her thyroid gland and how T3 is working to resolve her symptoms. Listen in and learn how the Gluten Free RN is reclaiming her Superwoman status and how you, too, can reach your full potential with good health and wellbeing!  

What’s Discussed: 

Maslow’s hierarchy of needs

  • Physiological, safety needs must be taken care of first
  • Difficult to achieve self-actualization with poor health

Nadine’s health struggle the past 30 months

  • Inadvertently hit with gluten three times in a row
  • Symptoms persisted past usual ten weeks
  • Sinus congestion, DH, pulmonary edema and weight gain

Nadine’s search for the underlying cause

  • Saw practitioner in Chiang Mai, damp rash lotion resolved symptoms
  • Naturopath in Oregon diagnosed myxedema (hypothyroidism)

How Nadine is reclaiming her health

  • Taking T3 to resolve symptoms

How a damaged thyroid gland impacted Nadine

  • Affected sleep, ability to do challenging physical activity

The importance of support in getting your health back

  • Need relationships to support choices

Resources:

Whole30

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

gfrn_podcast_banner

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

gfrn_podcast_banner

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

gfrn_podcast_banner

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

gfrn_podcast_banner

Celiac Disease and Gluten Sensitivity in Down, Turner and Williams Syndrome EP018

The medical community has an obligation to protect vulnerable populations, speaking up for any group that may not be able to advocate for themselves, and patients with Down, Turner, and Williams syndrome certainly fall into this category. Yet one facet of their health – one that could vastly improve quality of life – often goes overlooked.

There is a high prevalence of celiac disease among individuals with Down, Turner, and Williams syndrome, and it is recommended that these patients get tested annually. Unfortunately, many of the symptoms of celiac disease are attributed to the syndrome instead, and gluten sensitivity goes undiagnosed.

Today Nadine shares several case studies as well as her own experience working with patients with developmental delays. She covers the high incidence of celiac disease and non-celiac gluten sensitivity in Down, Turner, and Williams syndrome patients, the signs and symptoms of gluten damage, and the importance of annual screening in this population.

What’s Discussed: 

The prevalence of celiac disease and non-celiac gluten sensitivity in individuals with Down, Tuner and Williams syndrome

  • Annual testing is recommended
  • Signs and symptoms can be eliminated with a gluten-free diet

Tiffany’s story

  • Williams syndrome patient
  • Suffered from stage 4 liver failure and diabetes
  • Endured cracked, bleeding skin and fluid in the abdomen
  • Tested positive for celiac disease
  • Gluten-free diet resolved most of her symptoms

Alternatives to the standard blood test that could reveal non-celiac gluten sensitivity in Down syndrome patients

  • The anti-gliadin antibody (AGA) is an excellent biomarker
  • In a study published in the World Journal of Gastroenterology, 41% of Down syndrome patients had AGA antibodies

 The importance of testing family members

  • A mother who is malnourished during pregnancy may have a child with Down, Turner or Williams syndrome
  • Celiac disease may disrupt fetal development

The overlap of celiac disease and Down syndrome

  • Study found that 18 of 284 subjects ages two to 15 tested positive for celiac disease
  • In another study, 11 of 47 had positive blood tests

Symptoms of celiac disease and non-celiac gluten sensitivity

  • Diarrhea
  • Abdominal pain
  • Gas
  • Bloating
  • Constipation
  • Short stature
  • Brittle bones
  • Osteoporosis
  • Osteopenia
  • Thyroid issues
  • Anemia
  • Type 1 diabetes
  • Skin rash
  • Decreased appetite
  • Yeast overgrowth
  • Lichen planus
  • Difficulty swallowing

Nadine’s story of an autistic patient

  • Sweet gentleman who lived in group home
  • Suffered from diabetes, repeated infections and self-harm
  • Paleo diet made him calmer, didn’t irritate his throat
  • He enjoyed an improved quality of life

Cases of asymptomatic celiac disease in children with Down syndrome

  • Study published in the International Journal of Pediatrics
  • Toddlers screened at around 24 months
  • Biopsy proven celiac disease identified in 3-9% of children with Down syndrome
  • Not all patients with positive screens receive a biopsy if asymptomatic
  • One child in the study gained weight and energy on a gluten-free diet
  • A second child had less constipation and diarrhea
  • Follow-up study reported that 66% had health improvement

Resources Mentioned:

“Screening for Celiac Disease in Down’s Syndrome Patients Revealed Cases of Subtotal Villous Atrophy Without Typical for Celiac Disease HLA-DQ and Tissue Transglutaminase Antibodies” from the World Journal of Gastroenterology

“Prevalence of Celiac Disease in Down’s Syndrome” from the European Journal of Gastroenterology and Hepatology

“Asymptomatic Celiac Disease in Children with Trisomy 21 at 26 Months of Age or Less” from the International Journal of Pediatrics

Other Resources:

“Celiac Disease” from the Pediatric Gastroenterology Board Review Manual

“The Coexistence of Down Syndrome and a Triad Consisting of: Coeliac Disease, Insulin Dependent Diabetes Mellitus and Congenital Hypothyroidism” from Down Syndrome Research and Practice

“Coeliac Disease in Williams Syndrome” from the Journal of Medical Genetics

“Turner Syndrome and Celiac Disease: A Case-Control Study” from Pediatrics

Connect with Nadine: 

Instagram

Facebook

Contact via Email

Books by Nadine:

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