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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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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

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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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Small Intestinal Bacterial Overgrowth and Celiac Disease EP030

Nobody wants bad bacteria, parasites, yeast or food particles hanging around their small intestine! There are a number of causes of small intestinal bacterial overgrowth (SIBO), and undiagnosed celiac disease just happens to be one of them.

The Gluten Free RN is prepared to discuss the complexity of health issues celiac patients must resolve after going on a gluten free diet, one of which may be SIBO. She shares the symptoms of small intestinal bacterial overgrowth, how we test for SIBO, and potential treatments for the condition. Listen in to learn how foods and medication affect the microbiome and alter the environment of your intestines.

What’s Discussed:

The complexity of healing once a celiac patient goes gluten free

  • Very rarely does diet change heal all associated disorders
  • Other issues like SIBO must be treated once intestines heal

The causes of irritable bowel syndrome

  • Thought to be caused by stress
  • Studies now show food poisoning may be trigger

How food, drink and medication affect your intestines

  • Certain food/drink can move in bad bacteria, push out good
  • Antibiotics change pH of stomach acid
  • Bacteria, parasites, yeast and food particles get into small intestine

The consequences of damaged villi due to undiagnosed celiac disease

  • Compromised immune system
  • Inflammation
  • Body can’t absorb nutrients

The process of healing your intestines

  • Takes six months to a year
  • Must eliminate all foods that cause inflammation (gluten, dairy, soy, etc.)
  • After villi heal, deal with additional health issues (i.e.: SIBO)
  • Villi MUST grow back before good bacteria can return

The symptoms of SIBO

  • Gas, bloating
  • Abdominal pain
  • Diarrhea
  • Constipation

How to test for SIBO

  • Consume sugary drink, then breathe into tube
  • Hydrogen sulfate associated with diarrhea
  • Methane connected to constipation
  • Gives snapshot of what is happening in intestines

How SIBO is treated

  • Antibiotics (rifaximin)
  • Herbs (i.e.: oregano oil, berberine, neem)
  • Fecal microbial transplant

Risk factors for SIBO

  • Any course of antibiotics
  • Diabetes
  • Bowel surgery
  • Crohn’s disease
  • Undiagnosed celiac disease

Resources:

Primal Docs

SIBO Info Website

“Small Intestinal Bacterial Overgrowth: A Comprehensive Review” in Gastroenterology and Hepatology

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 Relationship Between the Respiratory System and Celiac Disease EP028


The average human takes between 14 and 20 breaths per minute. But if you are conscious of those breaths, that’s a problem. Perhaps you’re experiencing chest tightness, clogged sinuses or a nagging cough that make you very aware of every breath you take. If so, the ingestion of gluten may be a contributing factor to these respiratory issues.

Today Nadine explores the relationship between the lungs and celiac disease, offering anecdotal evidence as well as explaining the way that inflammation can lead to a number of respiratory problems. Because 70-90% of your immune system is housed in your intestines, it is no surprise that a leaky gut could make you more vulnerable to respiratory tract infections.

Despite the fact that current literature considers respiratory challenges to be an atypical presentation of celiac disease, the Gluten Free RN argues that there is enough anecdotal evidence to merit further study. Listen in to understand the vitamin deficiencies that likely contribute to respiratory issues, how those health concerns might be corrected by going gluten-free, and why your body heals more quickly on a high fat, whole food diet. It’s time to go gluten-free and breathe easy again!

What’s Discussed: 

How gluten ingestion likely affects the respiratory system

  • Body keeps fluids separate unless tissues leaky
  • Gluten alters epithelial tissue, including that of lungs

Nadine’s anecdotal evidence of a connection between gluten and respiratory issues

  • Fellow nurse had lung removed as child
  • Always needed inhalers
  • Went gluten-free with Nadine
  • Inflammation in lungs cleared, asthma gone
  • No longer needed inhalers

Respiratory issues that may be corrected on a gluten-free diet

  • Anemia (lack of red blood cells to carry oxygen causes shortness of breath with minimal exertion)
  • Recurrent respiratory infections
  • Cystic fibrosis
  • COPD
  • IPH (bleeding lung)
  • Pulmonary edema

Vitamin deficiencies caused by gluten ingestion that lead to respiratory problems

  • Vitamin K deficiencies initiate easy bruising, nose bleeds and bleeding lung

Why going gluten-free eliminates many respiratory issues

  • Gluten causes inflammation (-itis = inflammation)
  • Removing the cause heals intestines, repairs immune system
  • Patients operate on a higher level

Common symptoms of respiratory issues

  • Difficulty breathing
  • Chest tightness
  • Nagging cough
  • Clogged sinuses
  • Post-nasal drip

Nadine’s recommendations around diet and nutrition

  • Gluten- and dairy-free at a minimum
  • Ideally variation of Paleo diet
  • Whole foods (meat, fish, eggs, fruits, vegetables, nuts and seeds)
  • High fat (body needs to absorb fat-soluble nutrients – A, D, E & K)
  • Maintain Gluten Zero (takes six months to a year for intestinal villi to heal)

Why your body heals more quickly on a high fat, whole food diet

  • Body knows how to break down, utilize nutrients
  • Fat-soluble vitamins repair connective tissue, leaky gut

The genes that indicate a predisposition for celiac disease

  • HLA-DQ2
  • HLA-DQ8

Resources:

“Hemoptysis in Patients of Celiac Disease with Disproportionately Severe Anemia” in Multidisciplinary Respiratory Medicine

“A Case of Cough, Lymphocytic Bronchoalveolitis and Coeliac Disease with Improvement Following a Gluten Free Diet” in Thorax

“Respiratory Symptoms as Atypical Manifestation of Celiac Disease” in the Pediatric Oncall Journal

“Recurrent Rhinitis and Pulmonary Infections Revealing Celiac Disease” in Revue de Pneumologie Clinique

“Pneumococcal Septic Shock in the Setting of Hyposplenic Celiac Disease” in Hospital Physician

Coeliac Australia: Associated Conditions

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