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FAQ’s About Celiac Disease Answered EP047

How do I get over feeling sad about giving up the foods I love? Don’t celiac patients look a certain way? Can I eat wheat when I travel to Europe?

Today the Gluten Free RN is answering your frequently asked questions about celiac disease, clearing up misconceptions around the safety of wheat in Europe, the appearance of a celiac patient, and the percentage of the population that suffers from gluten sensitivity. She speaks to the challenges of getting your healthcare provider to do appropriate testing for celiac disease and the learning curve associated with changing your diet.

Nadine also explains the risks of embarking on a gluten challenge and the benefits of a super-good high fat diet. She discusses why a single breadcrumb can trigger an autoimmune response and how she uses tools like a Nima Sensor when she eats out. Listen in and learn why one negative test doesn’t rule you out for celiac disease, especially if you suffer from type 1 diabetes.

Having celiac disease doesn’t mean you have to live in a bubble. The Gluten Free RN wants to give you the answers you need to navigate the world—happy, healthy and gluten-free!

What’s Discussed: 

‘My sister has celiac disease, but I tested negative. I do have type 1 diabetes… What should I do?’

  • Get genetic test for HLA-DQ2, HLA-DQ8
  • Virtually every type 1 diabetic is gene carrier
  • One test doesn’t rule you out

 ‘Why do you use a Nima Sensor or EZ Gluten test strips? Doesn’t it give you a false sense of security?’

  • Have to trust others to prepare food when out
  • Not foolproof, but does give decent idea

 ‘A single breadcrumb or dusting of flour can trigger an autoimmune response? Really?’

 ‘I am overweight, I have dark hair, and I’m not of European descent. Don’t celiac patients look a certain way?’

  • Can’t see genes, celiac disease can affect any population worldwide
  • Overweight patients tend to be malnourished (unable to absorb nutrients)
  • Never rule out based on appearance, may not show physical symptoms

‘Why do you recommend a super-good high-fat diet?’

‘I’m already on a gluten-free diet. Do I need to go back to gluten to prove I have celiac disease?’

‘My cousin was just diagnosed with celiac disease, and she is very sad about giving up the food she grew up with. How can she get started on a gluten-free diet?’

  • Steep learning curve goes with process
  • Okay to feel sad, angry
  • Remember you will get better without surgery, medication
  • Try to see as an adventure

 ‘Why won’t my doctor order tests for celiac disease?’

  • Countries with for-profit healthcare tend to do poor job of testing, follow-up care
  • Fragmented, inaccurate education around celiac disease
  • Be own best advocate

 ‘Can I eat wheat in Europe?’

 ‘Is it true that celiac disease affects 1% of the population?’

  • 1% translates to 3M people
  • 3% is more accurate statistic
  • Won’t know for sure until conduct mass screening

Resources:

Gluten Free RN EP027: Type 1 Diabetes and Celiac Disease

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

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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The 2017 International Celiac Disease Symposium Recap #1 EP042

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

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

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

What’s Discussed:

The challenge of eating gluten-free in India

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

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

The importance of the thymus gland

  • T cells manufactured there

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

The impossibility of in vivo experiments for celiac research

The significance of epithelial barriers in a functioning immune system

  • First line of defense against microorganisms
  • Produce local antibodies

The difficulty of studying the dendritic cells

  • Inside tissues

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

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

Dr. Terry Wahls’ work around the mitochondria

  • Cured MS with Paleo diet

Dr. Alessio Fasano’s presentation

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

The big business of celiac disease

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

Who is affected by the gluten protein

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

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

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

The value of avoiding gluten exposure for infants

  • Emotionally stable
  • Grow, develop appropriately

The latest statistics regarding the prevalence of celiac disease

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

Celiac disease in the Asian population

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

How the Chinese diet has evolved over time

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

Other disorders that may indicate undiagnosed celiac disease

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

Why patients should be tested for celiac disease annually

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

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

  • 3% of Wilson’s patients tested positive

What celiac experts agreed on at ICDS 2017

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

Resources:

Nima Sensor

Gluten Free RN Travel Podcast EP036

Gluten Free Passport Allergy Cards

Dr. Terry Wahls’ Website

ICDS 2017 Program

Connect with Nadine: 

Instagram

Facebook

Contact via Email

‘Your Skin on Gluten’ on YouTube

Melodies of the Danube Gluten-Free Cruise with Nadine

Books by Nadine:

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

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The History of Celiac Disease EP041

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

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

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

What’s Discussed: 

The first doctor to identify celiac disease

  • Samuel Gee, 1888
  • Established dietary approach to treatment

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

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

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

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

The grains that contain gluten

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

How Dr. Willem Dicke developed the gluten-free diet

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

The myth that celiac is a childhood disease

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

Elaine Gottschall’s work in developing the Specific Carbohydrate Diet

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

The elimination of celiac disease from medical training

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

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

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

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

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

The classical symptoms of celiac disease

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

The expanded picture of how celiac disease may present

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

The genes that indicate a predisposition to celiac disease

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

How recognition of celiac disease resurfaced in the 1990’s

  • Gastroenterologists from abroad asking questions

The 2004 NIH Consensus Statement on Celiac Disease

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

How the US for-profit healthcare system impacts celiac patients

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

Nadine’s advice for celiac patients around choosing healthcare providers

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

What has changed since the NIH Consensus Statement in 2004

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

Dr. Rodney Ford’s role in celiac advocacy

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

Nadine’s guidance for vegetarians and vegans

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

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

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

Resources:

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

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

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

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

Good Food, Gluten Free by Hilda Cherry Hills

Dr. Alessio Fasano’s 2003 Celiac Study

2004 NIH Consensus Statement on Celiac Disease

Books by Dr. Rodney Ford

Gluten: ZERO Global by Dr. Rodney Ford

International Celiac Disease Symposium

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

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

The University of Chicago: Celiac Disease Facts and Figures

“A History of Coeliac Disease” in Digestive Diseases

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

Connect with Nadine: 

Instagram

Facebook

Contact via Email

‘Your Skin on Gluten’ on YouTube

Melodies of the Danube Gluten-Free Cruise with Nadine

Books by Nadine:

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

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Multiple Sclerosis and Celiac Disease EP040

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

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

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

What’s Discussed: 

Nadine’s MS scare

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

Dr. Terry Wahls’ story

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

The commonalities between celiac disease and MS

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

How celiac disease affects the body

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

The symptoms of celiac cerebellar ataxia

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

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

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

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

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

The 2014 study in Vienna regarding celiac disease and MS

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

The new evidence around seronegativity in celiac disease

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

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

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

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

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

The genes that indicate a predisposition to celiac disease

  • HLA-DQ2
  • HLA-DQ8

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

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

How gluten acts as a neurotoxin

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

The 2007 Oxford case study of celiac disease mimicking ALS

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

Why patients with neurological symptoms should be tested for celiac disease

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

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

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

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

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

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

The fundamentals of MS

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

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

  • Celiac researcher Dr. Marios Hadjivassiliou

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

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

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

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

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

  • MS symptoms
  • Graves’ disease
  • Positive ANA panel

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

Resources:

Dr. Terry Wahls’ TED Talk

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

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

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

University of Chicago Celiac Disease Center MS Info

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

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

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

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

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

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

 Connect with Nadine: 

Instagram

Facebook

Contact via Email

‘Your Skin on Gluten’ on YouTube

Melodies of the Danube Gluten-Free Cruise with Nadine

Books by Nadine:

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

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Dental Issues and Celiac Disease EP039

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

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

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

What’s Discussed: 

How the GI tract functions

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

How damage from gluten presents

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

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

The symptoms of celiac disease that present in the mouth

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

How Nadine treats gluten exposure

  • Activated charcoal
  • Drink water

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

  • Wheat
  • Barley
  • Rye
  • Oats

The relationship between fat soluble vitamins and celiac disease

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

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

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

Why parents should be tested for celiac disease prior to pregnancy

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

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

Why Nadine advocates for a mass screening

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

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

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

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

  • Even in Canada, diagnosis takes 11.7 years

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

The genes that indicate a predisposition to celiac disease

  • HLA-DQ2
  • HLA-DQ8

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

The deficiencies a potential celiac patient should test for

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

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

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

The importance of early diagnosis

  • Symptoms accumulate over the years

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

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

Resources:

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

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

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

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

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

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

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

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

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

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

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

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

“Celiac Disease Associated with Recurrent Aphthae” in Gut

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

Connect with Nadine: 

Instagram

Facebook

Contact via Email

‘Your Skin on Gluten’ on YouTube

Melodies of the Danube Gluten-Free Cruise with Nadine

Books by Nadine:

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

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Safely Traveling on a Gluten-Free or Paleo Diet EP036

Wanderlust.

It is human nature to want to explore, to experience a geography and culture different from our own. Travel can truly enrich our lives. Yet if you have celiac disease or non-celiac gluten sensitivity, the prospect of being away from the familiar for an extended period can be intimidating. Will I be able to find a grocery store? How do I locate a gluten-free restaurant that I can trust? What do I need to bring with me to ensure that I am avoiding gluten? And what if, despite my best efforts, I am accidentally exposed to the gluten protein?

No one wants their trip ruined by an unexpected illness, but you shouldn’t let the fear of gluten exposure keep you from going on an important business trip or taking that vacation you’ve always dreamed of. The Gluten Free RN has ten years of experience helping people discover that they can travel safely on a gluten-free or Paleo diet, and today she shares her recent travel experiences with you. Road trip with Nadine and learn how she locates safe restaurants, what she takes along to avoid inadvertent gluten exposure, and which apps and online resources offer the best advice for gluten-free travel!

What’s Discussed: 

The danger of living in a bubble

  • Leads to isolation
  • No way to live

 Nadine’s mission to teach people how to travel safely on gluten-free/Paleo diet

  • Follow her travels on social
  • Posts include pics of locations, food
  • Various travel tips

 How Nadine packed her cooler for a summer road trip to Boston

 The challenge of eating out on the road

  • Lucky to live in Pacific Northwest
  • 37 100% gluten-free restaurants in Portland
  • Accommodating to food intolerance
  • More difficult other places
  • Stressful when unfamiliar with establishment

 The fundamentals of a food desert

  • Little/no access to fresh fruits, vegetables
  • Most available food is highly processed

 Nadine’s advice around locating grocery stores, fresh foods when traveling

 Nadine’s tips for locating safe restaurants

  • Employ the Find Me Gluten Free app
  • Read Yelp reviews, though can be deceptive
  • Avoid restaurants that make pizza
  • Flour stays in air for up to 72 hours
  • Enormous risk of cross-contamination

 The myth that heat breaks down the gluten protein

  • Gluten protein is heat stable
  • Very difficult to denature (even at temperatures of 1200°)
  • Applies to woks, fryers and grills

 How Nadine is able to go without a meal when necessary

  • Nutrient ‘gas tank’ is full
  • High levels of vitamin D, B6, B12 and magnesium
  • Better to skip than be sick for days, weeks or months

 Who to talk to when you are eating out

  • Start with wait staff, chef
  • Speak with manager, if necessary

 Nadine’s experience at a highly-rated restaurant in Boston

  • Selected for positive Yelp reviews
  • Friend used Nima sensor, daughter’s meal contained gluten
  • Notified wait staff, spoke to chef and manager
  • Though establishment caters to gluten-free community, next four meals also tested positive for gluten
  • Learned that pizza was also made in kitchen
  • Stopped by grocery store on way back to hotel
  • Made great, quick and easy dinner in room

 Nadine’s gluten-free travel supply packing list

  • Bamboo utensils
  • Pans
  • Nima sensor or EZ Gluten strips
  • Gluten Free Passport allergy cards
  • Activated charcoal (to take with water after accidental exposure)
  • Sense of humor

 The best gluten-free online travel resources

 Why you should avoid fast food/restaurant chains that claim to have gluten-free offerings

  • Risk of cross-contamination too high
  • May not truly understand what it means to be gluten-free
  • Using gluten-free label as marketing tool

 Nadine’s upcoming River Cruise on the Danube

  • Opportunity for safe travel
  • Responsible, attentive chefs
  • Nadine on hand to confirm food is gluten-free, Paleo

 The food options available to the gluten-free population

  • Meat, fish and eggs
  • Nuts and seeds
  • Fruits and vegetables

Resources:

International Celiac Disease Symposium

Applegate

Kite Hill

Mary’s Gone Crackers

Jilz Crackerz

EPIC bars

Gluten Free Portland Restaurant List

Amy Fothergill of the Warm Kitchen

Ground Breaker Brewing

Whole Foods

Natural Grocers

Find Me Gluten Free

Nima Sensor

EZ Gluten Test Strips

Gluten-Free Globetrotter

Gluten Free Passport

Melodies of the Danube Brochure

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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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