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Gluten Free RN

Gluten Free RN, Nadine Grzeskowiak RN BSN CEN, talks about every aspect of celiac disease, non-celiac gluten sensitivity, gluten free lifestyle & diet, Paleo lifestyle, microbiome and all related issues.
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Now displaying: 2017
Dec 15, 2017

In 11 years as the Gluten Free RN, Nadine has done an incredible amount of research on celiac disease and delivered more than 2,000 lectures. No question she is frustrated to see misinformation continue to make its way onto celiac support sites and Facebook groups. How does the average person sift through all the material that’s out there—material that may be influenced by corporations and pharmaceutical companies with a vested interest in the way celiac disease is perceived—to get to the most accurate information?

Just in time for the holidays, the Gluten Free RN is sharing her wish list around the direction of celiac disease and non-celiac gluten sensitivity in the next ten years. She discusses the need for a global mass screening, explaining how celiac disease meets the World Health Organization’s criteria. She covers the reasons why pharmaceutical companies have no place in celiac research as well as the bad publicity the gluten-free community receives in the media.

Nadine speaks to the grievous lack of education about celiac disease among healthcare providers and shares her hope for a cultural shift to support people on a gluten-free diet, explaining the role nurses can play in ending the needless suffering. She talks about why a gluten-free diet is NOT dangerous and how to make the best food choices based on your lifestyle and current situation. Listen in and get empowered to accept responsibility for your health!

What’s Discussed: 

The need for a global mass screening

  • Celiac disease meets WHO criteria
  • 30-50% of population carries gene

Why pharmaceutical companies should not be involved in celiac research

  • Diet change resolves symptoms
  • Pharmaceutical involvement gives false hope for cure

The misinformation about celiac disease in the media

  • Misrepresentation in recent episode of Freakonomics Radio

The need to educate healthcare providers around celiac disease

Nadine’s call for support of people on a gluten-free diet

  • Don’t assume intentionally being difficult

The unique position of nurses to use their influence

  • Prevent needless suffering with understanding of celiac disease

Why you must accept responsibility for your own health

  • Take advantage of available resources
  • Find practitioners open to other modalities

How to avoid processed foods

  • Focus on raw, whole foods
  • Choose fresh fruits, vegetables
  • Don’t fall victim to convenience marketing
  • Use community, intuition to make decisions

Why a gluten-free diet is NOT dangerous

  • Nadine restored her health by eliminating grains
  • Unethical to suggest that celiac patient go off gluten-free diet

Resources:

Freakonomics Radio: The Demonization of Gluten

2004 NIH Consensus Statement on Celiac Disease

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

Dec 8, 2017

You know that vitamin C is good for you. It is necessary for the growth, development and repair of all your body tissues, and it plays a role in the healthy functioning of your immune system. But evidence shows that the RDA—90mg for men and 75mg for women—may be woefully inadequate. And if you are suffering from certain types of cancer or sepsis, vitamin C may be the key to recovery.

 The Gluten Free RN is joined by vitamin C researcher Alex Michaels from the Linus Pauling Institute at Oregon State University to discuss the latest developments in vitamin C, explaining how intravenous vitamin C works to kill certain cancer cells and reverses the organ failure associated with sepsis. He also covers the difference between vitamin C inadequacy and vitamin C deficiency and the debilitating symptoms of scurvy.

 Nadine and Alex speak to the best food sources of vitamin C and how it impacts other vitamins and minerals like iron and copper. Alex offers his advice around how much vitamin C you should get on a daily basis and explains why synthetic and natural vitamin C are identical. Learn about the LPI mission to determine the optimal ranges of micronutrients and phytochemicals you should be getting on a daily basis and how you can benefit from their research!

What’s Discussed:

Micronutrients vs. macronutrients

  • Micronutrients are vitamins, essential minerals needed in small amounts (milligrams or micrograms/day)
  • Macronutrients include fats, carbs and proteins (grams/day)
  • Phytochemicals come from plants, affect health but not essential nutrients

 The difference between intravenous and oral vitamin C

  • Intravenous bypasses GI system, high concentration in bloodstream (up to 100 grams)
  • Body can only absorb certain amount of oral vitamin C, inflammation may prevent absorption

 Vitamin C’s resurgence as a cancer therapy

  • High levels of intravenous vitamin C can covert oxygen to hydrogen peroxide
  • Hydrogen peroxide floods and kills some cancer cells (e.g.: pancreatic tumors)

 Vitamin C’s role in the treatment of sepsis

  • Reverses organ failure, decreases inflammation
  • May restore vitamin C to normal levels, protect from negative effects of iron

 The availability of intravenous vitamin C

  • Difficult to obtain, naturopaths usually have dedicated supplier
  • More readily available in Australia, New Zealand

 The fundamentals of scurvy

  • Defined as deficiency in vitamin C
  • Symptoms include bleeding gums, corkscrew hair growth, open wounds, malaise and low energy
  • Very rare in western world, would have to go without any fruits or vegetables for months
  • May have vitamin C inadequacy without any outward signs of problem

 The best food sources of vitamin C

  • Chili peppers
  • Tropical fruits (papayas, Kakadu plum, camu camu)

 Factors that are known to denigrate vitamin C

  • Heat, light and air
  • Mechanical disruption (i.e.: juicer)
  • Basic pH (anything above 7)
  • Enzymatic factors
  • Iron, copper

 How vitamin C impacts other vitamins and minerals

  • Enhances iron absorption, some must be careful of iron overload
  • Synthetic vitamin C may deplete copper concentration

 Alex’s take on the appropriate daily intake of vitamin C

  • 400 mg/day recommended
  • RDA much too low

Resources:

Linus Pauling Institute

Micronutrient Information Center

LPI on Facebook

LPI on Twitter

LPI on LinkedIn

LPI on Pinterest

Biochemical, Physiological, and Molecular Aspects of Human Nutrition by Martha H. Stipanuk PhD and Marie A. Caudill

Cancer and Vitamin C by Ewan Cameron and Linus Pauling

Dr. Paul Marik on NPR

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

Dec 1, 2017

How do you successfully transition to and maintain a 100% gluten-free diet for the rest of your life? The prospect of eliminating wheat, barley and rye from your diet may seem daunting, but it is possible to go gluten free for good—for the good of your family and your health!

The Gluten Free RN explains the addictive nature of gluten and what to expect during the detox process as you begin your gluten-free journey. She offers valuable advice around how to choose the best quality food products while avoiding potential sources of cross-contamination.

Nadine discusses the need for supplements that will help you heal faster and more completely, speaking to the vitamin levels you should monitor along the way. Listen and learn her best tips for navigating the grocery store and maintaining a positive attitude throughout the process of going gluten-free—for GOOD!

What’s Discussed: 

The addictive nature of gluten

  • Gliadin, gluten proteins bind to opioid receptors
  • Wheat, barley and rye are cheap and readily available

 What to expect during the detox process

  • Different for everyone
  • Consider elimination diet to reboot system
  • May feel worse before feel better
  • Headaches, low energy and feeling hungry are common

 Why you shouldn’t cheat on a gluten-free diet

  • Same autoimmune response, even if symptom-free

 Potential sources of cross-contamination

  • Processed foods
  • Unwashed fresh fruits, vegetables
  • Bulk bins
  • Restaurants
  • Own home (i.e.: cutting boards, hands, pets, utensils, appliances, etc.)

 Nadine’s rules around choosing quality food products

  • Five ingredients or less
  • Picture every ingredient
  • Certified gluten-free
  • 100% grain-free

 Why there is no such thing as cheap food

  • Pay for quick-fixes to treat symptoms

 The necessity of additional vitamins, supplements

  • Helps heal faster, more completely
  • Use multivitamin, fish oil, pre- and probiotics
  • Check levels of D3, Zinc, B6 and B12
  • Liquid, chewables and capsules are easier to break down

 Nadine’s advice around navigating the grocery store

  • Plan menus in advance
  • Bring list of safe foods
  • Read labels carefully
  • Consider local co-ops, natural grocers and farmers markets

 Nadine’s best tips for going gluten-free

  • Concentrate on what you can eat
  • Accept more cooking, baking and meal planning
  • Find support group
  • Stay current on research, food labeling
  • Practice mindfulness, maintain positive attitude

 Resources:

 

Whole30

Country Life Vitamins

Robb Wolf’s Paleo Food Matrix

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

Nov 24, 2017

‘When in doubt, go without.’

The problem with processed food is that you simply can’t be sure that it is gluten-free. The risk of cross-contamination is high, and no one at the big corporations is accountable for your health. Not to mention the fact that processed foods have been irradiated to make them shelf-stable, effectively killing any probiotics. Even certified gluten-free products are often low in nutrients, high in calories—and expensive!

So what should you eat? The Gluten Free RN is on the case with her best suggestions around finding organic, whole foods that contain the healthy fat you need to heal. She explains her revised, gluten-free version of the food pyramid and discusses how these nutrient-dense foods support the healing process.

Nadine provides a list of the best nutrient-dense foods, offering the benefits of each. She also speaks to the most appropriate vitamins and supplements available to solve your nutrient deficiencies. You are what you eat, so make sure you are filling your tank with nutrient-dense foods that will improve your health and quality of life!

What’s Discussed: 

How nutrient dense foods support healing

  • Regenerate villi
  • Reduce inflammation of intestines
  • Heal immune system

Why Nadine recommends staying away from gluten-free junk foods

  • Low in nutrients, high in calories
  • Risk of cross-contamination (processed in facilities with wheat products)

The best sources of nutrient-dense foods

  • Whole foods, organic
  • Farmers market (few/no fertilizers)

Why shelf-stable products lack nutrients

  • Food dead from irradiation, no live probiotics

The risk of contamination in processed foods

  • No one accountable at big corporation
  • ‘When in doubt, go without’

Nadine’s revised food pyramid

  • Fruits and vegetables at base
  • Meat, fish and eggs
  • Nuts, seeds and berries

The importance of eating healthy fats

  • Heals intestines
  • Absorb fat-soluble vitamins (A, D, E and K)
  • Fix deficiencies
  • Healthy brain cells, nervous system
  • Balance hormones

Nadine’s recommendations around the best nutrient-dense foods

  • Sweet potatoes
  • Leafy greens (e.g.: kale, collard greens)
  • Berries
  • Coconuts
  • Black molasses
  • Avocados
  • Pumpkin, chia seeds
  • Meat and fish
  • High-quality eggs
  • Licorice root, peppermint tea
  • Cinnamon

Nadine’s vegetable challenge

  • Expand your vegetable repertoire
  • Try one new veggie per week

Nadine’s suggestions around additional vitamins, supplements

  • Good quality multivitamin
  • Fish oil (i.e.: Nordic Naturals)
  • Pre/probiotics
  • Vitamin D

How to avoid cross-contamination

  • Avoid bulk food bins
  • Wash produce

Resources:

Midway Farms on Facebook

Nordic Naturals

Country Life Vitamins

Bluebonnet Nutrition

Pure Encapsulations

National Nurses in Business Association

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

Nov 17, 2017

With the approach of the holidays, you may be nervous about navigating family and workplace gatherings—especially if you are newly diagnosed with celiac disease. How do you explain your dietary restrictions and keep yourself safe, eating well without getting ‘glutened’?

Today the Gluten Free RN shares her best advice around managing the holidays with celiac disease. She offers ten key tenants to help you enjoy the holiday season and mitigate stress, without feeling like you’re missing out. She shares some things you need to avoid, including unsafe situations, people who make you miserable, and cheating on your gluten-free diet! But she also discusses strategies you can implement to make the season bright, such as creating new traditions, getting creative in the kitchen, and finding your tribe—the people who will support you in your gluten-free journey.

Nadine also gives tips around where to go for gluten-free ingredients and holiday recipes, and how to develop a backup plan so you won’t go hungry if the food you encounter is questionable. You are likely to encounter well-intentioned friends and family members who have no idea how to feed you safely at holiday parties. Listen in and learn how to be clear about your dietary needs and take control of your health without isolating yourself from loved ones during this most wonderful time of the year!

What’s Discussed: 

#1 Don’t eat anything contaminated with wheat

  • Cannot eat center of pie, any part of turkey with bread stuffing

#2 Beware of good-intentioned people

  • Don’t eat anything questionable
  • Bring a snack with you just in case

#3 Be prepared to establish new traditions

  • Get creative in kitchen

#4 Don’t isolate yourself

  • Find support group, create your own

#5 Gather recipes early

#6 Order ingredients in advance

  • Consider organic, free range turkey

#7 Don’t invite people who make you miserable

  • Set clear boundaries (no complaints, ridicule)

#8 Eat before you go or take your own plate

  • ‘Desperate people make desperate decisions’
  • Take a dish to share, take your portion first

#9 Don’t be a victim

  • Be clear about your needs

#10 Find your people

  • Those who truly love you don’t want you to be sick

Resources:

Nima Sensor

EZ Gluten Test Strips

Paleo Magazine

Paleo Principles: The Science Behind the Paleo Template, Step-by-Step Guides, Meal Plans, and 200+ Healthy & Delicious Recipes for Real Life by Sarah Ballantyne

Sarah Ballantyne on Instagram

Glutenpro

EnteroLab

Connect with Nadine:

Instagram

Facebook

Contact via Email

‘Your Skin on Gluten’ on YouTube

Melodies of the Danube Gluten-Free Cruise with Nadine

Books by Nadine:

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

Nov 10, 2017

If you’ve been following a strict gluten-free diet, but continue to suffer from lingering neurological symptoms, you may need to explore the possibility that you have Lyme disease. In fact, there are many parallels between celiac disease and Lyme, and the Gluten Free RN has called in an expert to discuss the similarities between the two disorders and why a gluten-free diet is part of the proper treatment for both.

Dr. Usha Honeyman, a chiropractic and naturopathic physician out of Corvallis, Oregon, joins Nadine to explain the fundamentals of Lyme disease. She shares her best advice around prevention and treatment, exploring why it can be difficult to get an accurate diagnosis.

Nadine and Usha also cover the inflammation of the gut that plagues both celiac and Lyme patients, the neurological component of Lyme disease, and the relationship between Lyme and illnesses like MS, Parkinson’s and ALS. Listen in to understand what can happen when Lyme goes untreated and how antibiotics coupled with a gluten-free diet may restore your health!

What’s Discussed: 

The fundamentals of Lyme disease

  • Most common insect-borne disease in US
  • Primarily carried by tics (disable immune system at bite site)
  • CDC estimates 300K new cases each year

How to prevent Lyme infection

 How the political controversy in medicine has led to conflicting information around Lyme disease

The treatment for Lyme disease

  • Long-term antibiotics
  • T3 to raise body temperature, make white blood cells more efficient
  • Probiotics to support immune system

Why Dr. Honeyman advises Lyme patients to go gluten-free

  • Lyme causes inflammation of gut

 The neurological component of Lyme disease

  • Spirochetes permeate blood-brain barrier
  • Cause brain fog, balance issues, sensory disorders, etc.

The alpha-gal reaction in Lyme patients in the Southeast US

The strange gait and lower-face movement in Lyme patients

  • Bell’s palsy is red flag for Lyme disease

The importance of having a Lyme-literate doctor

  • Skin scraping of rash for diagnosis available in research setting
  • ELISA and Western blot miss 80-90% of Lyme patients

The consequences of untreated Lyme disease

 The three forms of Borrelia

  • Spirochete-form, intracellular and cystic

Resources:

Dr. Honeyman’s Website

CDC Website

Picaridin

Natrapel

Insect Shield Clothing

Grain Brain: The Surprising Truth about Wheat, Carbs, and Sugar—Your Brain’s Silent Killers by David Perlmutter

Under Our Skin Film

International Lyme and Associated Diseases Society

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

Nov 3, 2017

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

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

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

What’s Discussed:

The importance of questioning the source of your information

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

 Why Nadine avoids the ‘gluten removed’ label

 The questions to ask about gluten-free products

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

 The cumulative effect of eating many products just under 20 ppm

 Reliable companies that consistently produce truly gluten-free products

 The challenges faced by newly diagnosed celiac patients

  • Feeling different
  • Loss of convenience

 Why Nadine avoids gluten-free breads

 New food options to explore as a celiac patient

 Why Nadine recommends reevaluating the foods you consume

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

 Why you can’t trust product labels

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

 Nadine’s rules around choosing products

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

Resources:

 

Canadian Celiac Association

The Gluten Dude on Facebook

Ground Breaker Brewing

The Gluten Intolerance Group of North America

Enjoy Life Foods

Glutino

Namaste Foods

Pamela’s Products

Jilz Crackers

Lundberg Family Farms

Mary’s Gone Crackers

Casabi Crackers & Flatbread

Jackson’s Honest

Kettle Brand

Nima Sensor

EZ Gluten Test Strips

Applegate

Beeler’s Pure Pork

Hempler’s

Connect with Nadine:

Instagram

Facebook

Contact via Email

‘Your Skin on Gluten’ on YouTube

Melodies of the Danube Gluten-Free Cruise with Nadine

Books by Nadine:

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

Oct 27, 2017

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

 

Oct 20, 2017

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

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

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

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

What’s Discussed: 

Why Nadine sticks with clearly marked gluten-free products

Some of the surprising places gluten hides

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

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

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

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

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

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

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

Why you can’t trust labels

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

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

Why Nadine urges you to be picky

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

Resources:

Desert Essence

Savonnerie

Schmidt’s Naturals

Mary’s Gone Crackers

Jilz Crackers

eatingEVOLVED

PASCHA Chocolate

Enjoy Life Foods

Ground Breaker Brewing

Red Apple Lipstick

Connect with Nadine:

Instagram

Facebook

Contact via Email

‘Your Skin on Gluten’ on YouTube

Melodies of the Danube Gluten-Free Cruise with Nadine

Books by Nadine:

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

Oct 13, 2017

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

Oct 6, 2017

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

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

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

What’s Discussed: 

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

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

The quality of food available in hospitals

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

How to verify that medications are gluten-free

The role of the pharmacist in providing gluten-free medication

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

What you can do to communicate your needs to hospital staff

The significance of having an advocate

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

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

  • Bone broth
  • Soup with vegetables

 The role of nutrient-dense food in healing the body

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

The Catch 22 of gluten and hospitals

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

How antibiotics affect your system

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

 

Resources:

Gluten Free Drugs Website

Dough Nation by Nadine Grzeskowiak

Emergency Preparedness with Nutrient Dense Foods

Gluten Free RN Episode 15

GIG Resource: Hospital Stays Made Safe

Gluten Intolerance Group of North America

Connect with Nadine: 

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Facebook

Contact via Email

‘Your Skin on Gluten’ on YouTube

Melodies of the Danube Gluten-Free Cruise with Nadine

Sep 29, 2017

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

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

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

 What’s Discussed: 

The use of PWAG as a derogatory term

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

 The new term orthorexia nervosa

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

 The concept of food as medicine

 Anecdotal evidence of celiac disease misdiagnosed as anorexia

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

 Why celiac disease and gluten sensitivity are misdiagnosed as eating disorders

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

 The prevalence of celiac disease

  • 3% of the US population
  • Millions undiagnosed

 How gluten affects a celiac patient

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

 Nadine’s recommended variation of a Paleo diet

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

 The study of celiac disease and eating disorders

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

 The issues associated with malnourishment

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

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

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

 The mental health issues associated with malnourishment

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

 The effect of gluten on epithelial tissue

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

 The consequences of gluten getting through the blood-brain barrier

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

 The shocking statistics around psychotropic medication in the US

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

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

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

 The process of a gluten detox

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

 The benefits of maintaining a gluten-free diet

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

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

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

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

 The places where gluten hides

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

Resources:

How Doctors Think by Jerome Groopman, MD

Dr. Groopman’s NPR Interview

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

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

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

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

Connect with Nadine: 

Instagram

Facebook

Contact via Email

‘Your Skin on Gluten’ on YouTube

Melodies of the Danube Gluten-Free Cruise with Nadine

Books by Nadine:

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

Sep 22, 2017

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

Sep 15, 2017

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

Sep 8, 2017

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

Sep 1, 2017

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

Aug 25, 2017

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

Aug 18, 2017

Nadine spent 17 years working as a nurse in the ER. She holds a membership in the Emergency Nurses Association, as well as a Certified Emergency Nurse certification. During the course of her career, Nadine obtained ACLS, PALS, NALS, ENPC and TNCC certifications, honing her skills in advanced cardiac life support, neonatal advanced life support, pediatric advanced life support, and trauma. Despite this impressive background and experience, she had never been educated about celiac disease, and didn’t know what to look for until she was diagnosed herself.

Nurses are in a unique position to recognize potential celiac patients and act appropriately. Though most nurses don’t have the authority to diagnose, they do have an obligation to act as patient advocates. Because celiac disease is the most underdiagnosed and misdiagnosed autoimmune disease in the world, it is important that nurses get educated about the fundamentals of celiac disease, the wide array of symptoms an undiagnosed patient may present, and how to keep celiac patients safe in and out of the hospital.

Today on the podcast, the Gluten Free RN addresses nurses, explaining how celiac disease damages the GI tract, the consequences of a ravaged immune system, and the neurological nature of the disease. She also reviews the genes that indicate a predisposition to celiac disease, the best available tests for gluten sensitivity, and the need for a worldwide mass screening. This is a must-listen for medical professionals, offering an overview of the most current celiac studies and an explanation of how to approach doing research on your own. Celiac disease is on the rise and it doesn’t discriminate, so it is crucial that the nursing community get educated – STAT.

What’s Discussed: 

Why nurses need to employ a high index of suspicion regarding celiac disease

  • Most undiagnosed and misdiagnosed autoimmune disease in world

 The lack of training around celiac disease in the medical community

  • Nadine was nurse for 17 years
  • Didn’t know symptoms of celiac disease
  • Diagnosed ‘by accident’

 The celiac symptoms Nadine thought to be ‘normal’

  • Canker sores
  • Intermittent constipation, diarrhea
  • Eczema on hands
  • Difficult time gaining weight
  • Whole family had gas

 What nurses need to know about celiac disease

  • What it is, what it entails
  • Symptoms may present with
  • How to keep patients safe (in and out of hospital)
  • How to request testing
  • How to interpret lab results

 How long it takes to receive celiac diagnosis in US

  • 9-15 years

 The restrictions of being a nurse

  • Can’t diagnose (can recognize, treat appropriately)
  • Can’t perform surgery
  • Can’t prescribe meds, take patient off medication

 Nadine’s experience leading up to her celiac diagnosis

 Nadine’s celiac diagnosis

  • Dermatologist diagnosed
  • Blood test, skin biopsy negative
  • HLA-DQ2.5 gene carrier (super-celiac category)

 Why a negative blood test, skin biopsy doesn’t rule out celiac disease

 Nadine’s current health

 Why Nadine stopped working as an ER nurse

  • Celiac diagnosis was life-changing
  • Started own businesses
  • RN On Call, Inc
  • The Gluten Free RN
  • Celiac Nurse Consulting

 The increased prevalence of mortality in undiagnosed celiac patients

  • Undiagnosed celiac disease associated with 4-fold increased risk of death (45 years of follow-up)
  • Prevalence of undiagnosed celiac disease has increased dramatically in US over last 50 years

 The grains that contain gluten

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

 The products that may contain gluten

  • Medication
  • Food
  • Personal care products

 The search terms to use when doing celiac research

  • Gluten-related disorders
  • Both spellings (celiac, coeliac)

 Why celiac disease is primarily a neurological disorder

  • Involves enteric nervous system (in intestines)
  • Vagus nerve (superhighway of information from intestines to brain)

 Why celiac disease is not an allergy

  • Allergy is IgE-mediated antibody response
  • Celiac tends to be IgA, IgG-mediated antibody responses

 The genes that indicate a predisposition to celiac disease

  • HLA-DQ2
  • HLA-DQ8

 Why Nadine advocates for a world-wide mass celiac screening

 The relationship between celiac disease and infertility

  • People with infertility issues, difficulty maintaining pregnancy should be tested

 The chronic nature of celiac disease

  • Never goes away
  • Gluten is neurotoxin
  • Must be 100% gluten-free for life

 How gluten exposure presents for Nadine

  • Blisters in mouth within 10 minutes

 How gluten can cause damage along entire length of GI tract

  • 28 to 32 feet in length
  • Person-to-person variability

 How damage to GI tract presents

  • Canker sores
  • Difficulty swallowing, dysphasia
  • GERD
  • Eosinophilic esophagitis
  • Gas, bloating
  • Diarrhea constipation
  • Crohn’s disease
  • Atypical diseases
  • Idiopathic diseases
  • Ulcerative colitis
  • Diverticulitis
  • Diverticulosis
  • Rectal cancer
  • Bowel cancer
  • Hemorrhoids

 How constipation can be a neurological issue

  • Gluten as neurotoxin can paralyze nervous system, intestines
  • Stool cannot get pushed through
  • Can result in colon cancer, megacolon

 Disorders that may be caused by undiagnosed celiac disease

  • Diabetes
  • Heart problems
  • Sudden cardiac deaths
  • Strokes
  • Bowel, rectal cancer (recent increase in young people)

 Why a biopsy is no longer considered the gold standard of celiac testing

  • Positive anti-tissue transglutaminase and positive EMA indicates damage to intestines
  • Endoscopist should take six to 15 samples in duodenum, jejunum (damage can be patchy)

 The stages of intestinal damage caused by celiac disease

  • Marsh 1 – microvilli destroyed
  • Marsh 2, 3 – villi themselves fall over, blunt or atrophy
  • Marsh 4 – looks like hot, inflamed sponge and immune system compromised

 The consequences of a damaged immune system

  • Hypo-responsive (doesn’t respond)
  • Hyper-responsive (reacts to everything)

 The importance of including a total IgA and IgG in the celiac antibody panel

  • Ensure patient is not IgA deficient

 How the US has gone backwards in the last 70 years

  • Times article from 1950 declares ‘cures certain in 90% of cases’ and ‘deaths rare’
  • Celiac disease has gone unrecognized since then

 The testing for celiac disease

  • Celiac antibody test (baseline)
  • Small intestinal biopsy
  • Nutritional panel (D3, B6, B12, magnesium RBC, zinc, ferritin)
  • Follow-up to track healing, ability to absorb nutrients

 The difficulty with the celiac antibody test

  • 70% false negative

 The best available celiac testing

 Factors that might interfere with accurate celiac testing

  • IgA deficiency
  • Benicar (blood pressure med) known to cause villous atrophy in absence of celiac disease
  • Lab-to-lab variability
  • Only tests for anti-tissue transglutaminase 2

 How to carry out a clinical trial for celiac disease or gluten sensitivity

  • Adopt gluten-, dairy-free diet for at least three months
  • It takes six months to a year for intestines to heal
  • Recommended for patients with genetic predisposition, regardless of negative blood test

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

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

 The findings of a celiac study published in the Journal of Insurance Medicine

  • Atypical, non-diarrheal presentations now most frequent
  • Celiac disease is grossly underdiagnosed in US
  • Average delay in diagnosis for adult patients ranges from four to 11 years
  • Diagnosis and treatment with gluten-free diet leads to improved quality of life
  • Medical costs in celiac cohort were 31% lower over three-year period

 Why celiac disease should be on every primary care physician’s differential diagnosis

 The rise of celiac disease

  • 1:501 in 1974
  • 1:219 in 1989
  • 1:100 is current estimate
  • Doubles every 15 years (according to Mayo Clinic)

 Why Celiac disease is a worldwide issue

  • Affects every ethnicity
  • Frequency of tTGA in Mexico City study was 1:37
  • Increasing diagnoses in North Africa, Middle East and Northern India

 How celiac disease can lead to obesity

  • Patient cannot absorb nutrients (malnourished)
  • Body responds by storing fat for cheap energy

 How the risk of cancer increases exponentially in undiagnosed celiac patients

 Why nurses must be patient advocates

 Nadine’s advice around research and celiac disease for nurses

  • Not taught in nursing programs
  • Do your own research to keep up with current info

Resources:

Snarky Nurses  on Instagram

National Nurses in Business Association

“Increased Prevalence and Mortality in Undiagnosed Celiac Disease” in Gastroenterology

PubMed

Cyrex Laboratories

EnteroLab

New York Times Article, May 1950

“Economic Benefits of Increased Diagnosis of Celiac Disease in a National Managed Care Population in the United States” in the Journal of Insurance Medicine

“Celiac Disease Could be a Frequent Disease in Mexico: Prevalence of Tissue Transglutaminase Antibody in Healthy Blood Donors” in the Journal of Clinical Gastroenterology

“Celiac Disease in African-Americans” in Digestive Diseases and Sciences

“Coeliac Disease” in The Lancet

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

Aug 11, 2017

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

Aug 4, 2017

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: 

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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

Jul 28, 2017

Few things are as painful as losing a loved one to an overdose. Addiction is such a powerful demon, and most of us have friends or family who are facing it right now. It is easy to feel helpless, believing that there is little you can do to ease their pain. But what if a diet change could resolve the physical and psychological pain at the root of the dependency? You might be surprised to learn that gluten binds with the opioid receptors in the brain, functioning as a ‘gateway drug’ to other addictions.

Today the Gluten Free RN shares her experiences with addiction and overdose during her 17-year career in the ER, explaining how she made the connection between undiagnosed celiac disease and addiction issues. She discusses the US opioid epidemic and how a mass screening for celiac disease could prevent such widespread substance abuse. Listen as she describes the morphine-like effects of gluten on your brain, the role of the microbiome in dictating cravings, and why gluten may be at the root of the pain that leads patients to self-medicate with dangerous recreational drugs.

The sad truth is that 91 Americans die every day from an opioid overdose. Because undiagnosed celiac disease goes hand in hand with addiction, is it past time to get our loved ones tested. Suggest it today -- it could save a life.

What’s Discussed:

The recent flood of headlines regarding the US opioid epidemic

How exorphins affect the brain

  • Endorphins release chemical to make person feel good (i.e.: runner’s high)
  • Ingest exorphins, make feel differently (e.g.: good, tired, sedate)
  • Includes food, alcohol, pharmaceuticals and recreation medications (marijuana, cocaine, heroin, methamphetamines)

How Narcan reverses a heroin overdose

  • Binds with opioid receptors

The potential connection between gluten and opioid addiction

  • Gluten binds with same receptors in brain
  • Addiction to gluten, dairy may be precursor to other addictions
  • Many self-medicate with ‘comfort food’ containing wheat and dairy (i.e.: pizza, mac and cheese)

The morphine-like effects of gluten and dairy on your brain

  • Very similar to narcotics
  • Elimination diet causes uncomfortable detox process
  • Can take a few days, several weeks
  • May experience fatigue, depression, abdominal pain, headaches
  • Feel better once body clear of damaging proteins

The substances patients abuse to treat pain

  • Prescription drugs
  • Over-the-counter drugs
  • Alcohol
  • Cigarettes
  • Recreational drugs (e.g.: methamphetamine, marijuana)

The symptoms of pain patients may experience due to gluten

  • Autoimmune issues
  • Intractable headaches
  • Psychological, emotional anguish

The data around opioid overdose in the US

  • 91 Americans die every day
  • 32,000 people die annually
  • Numbers likely much higher

How gluten sensitivity may lead to pain med addiction

  • Opioid receptors may be damaged, destroyed by gluten
  • Patient cannot absorb pain meds due to villous atrophy
  • Need stronger meds, higher dose

Common prescription meds for pain

  • Vicodin
  • Percocet
  • Morphine
  • Dilaudid

Why patients turn to heroin for pain relief

  • Less expensive to acquire
  • Easily accessible

How food can act as a ‘gateway drug’ to other addictions

  • Celiac disease causes nutrient deficiencies
  • Magnesium
  • Folic acid
  • B vitamins
  • D3
  • Addictions to alcohol, cigarettes, shopping, etc. seek to fill void
  • Eliminate gluten and heal intestines, addictions resolve

Why Nadine advocates a mass screening for celiac disease

  • HLA-DQ2, HLA-DQ8 gene carriers more susceptible to addiction issues
  • Identification can prevent opioid addiction

How ER departments treat alcoholics

  • Banana bag (liter of saline + multivitamin, thiamin, folic acid and magnesium sulfate)
  • Addresses nutrient deficiencies
  • Prevent the shakes, help patient detox gradually
  • Celiac disease may be underlying issue

The power of the microbiome

  • Tiny bacteria live in intestine
  • Dictate what we eat, drink through cravings
  • Communicate with brain (e.g.: yeast signals need for sugar)

The mental health issues caused by untreated celiac disease that may lead patients to self-medicate

  • Depression
  • Anxiety
  • Hallucinations
  • Schizophrenia
  • Bipolar disorder

Resources:

“Here’s How a Key Part of the Opioid Legislation is Not Working” in the Boston Globe

“Gluten Sensitivity May Be a Misnomer for Distinct Illnesses to Various Wheat Proteins” in Scientific American

“John F. Kennedy’s Pain Story: From Autoimmune Disease to Centralized Pain” in Practical Pain Management

“Malabsorption of Opioid Medications” in Practical Pain Management

“The Opioid Effects of Gluten Exorphins: Asymptomatic Celiac Disease” in the Journal of Health, Population and Nutrition

Connect with Nadine: 

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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

Jul 21, 2017

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

Jul 14, 2017

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

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

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

What’s Discussed: 

The gluten free lifestyle

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

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

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

 The advantages of living in the Northwest US

 Nadine’s recommendations re: food options

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

 The misguided reason why people do a gluten challenge

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

 The value of a gluten-free diet in preventative medicine

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

 What it means to do a gluten challenge

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

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

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

 The risks vs. rewards of enduring a gluten challenge

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

 Why Nadine would never do a gluten challenge

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

  • Often misinterpreted, read incorrectly
  • Damage can be patchy

 Why an antibody panel can be unreliable in identifying celiac disease

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

 How long it takes to obtain celiac diagnosis

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

 Nadine’s advice around celiac testing

 The enduring nature of celiac disease

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

 Nadine’s nutrition guidelines for celiac patients

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

 Nadine’s work as a patient advocate

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

Resources:

Whole Foods

Natural Grocers

First Alternative Co-op

LifeSource Co-op

Cyrex Laboratories

LabCorp

EnteroLab

Connect with Nadine: 

Instagram

Facebook

Contact via Email

‘Your Skin on Gluten’ on YouTube

Melodies of the Danube Gluten-Free Cruise with Nadine

Books by Nadine:

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

Jul 7, 2017

Celiac disease is grossly underdiagnosed in the United States in large part because the medical community is operating on outdated information about the condition. And despite the recommendations of the National Institute of Health back in 2004, we have yet to implement a mass screening for celiac disease, and health care providers remain alarmingly uninformed.

The Gluten Free RN is taking steps to remedy the situation by sharing the basics for medical professionals. Today she covers the WHO’s definition of celiac disease, how our understanding of the condition has change over time, and some common misconceptions about celiac disease. She also explains the top symptoms, recommended testing for celiac disease and gluten sensitivity, and the neurological nature of the disorder.

Listen in to learn what health care providers need to know about this undiagnosed epidemic, the complex web of health issues that may result from undiagnosed celiac disease, and why it is important to have a high index of suspicion and include celiac testing on every differential diagnosis. Help your patients go gluten-free and collect something other than autoimmune disorders! 

What’s Discussed: 

The standard of care in the US

  • Providers should have diagnosed at least 1% of patients with celiac disease
  • Undiagnosed for 70 years, must overcome to prevent further pain and suffering

The goals of Nadine’s consulting business

  • Works with facilities to protect celiac patients
  • Ensure compliance with ADA

How the media portrays the gluten-free lifestyle

  • Dissuades people from adopting diet (program sponsors influence messaging)
  • Negative headlines

How our understanding of celiac disease has changed over time

The recommendations of the 2004 NIH consensus meeting regarding celiac disease

  • Mass screening (meets WHO criteria)
  • Education for health care providers

The World Health Organization criteria for mass screening

  • Early clinical detection essential
  • Condition is common
  • Screening tests highly sensitive and specific
  • Effective treatment available
  • Untreated condition leads to complications

The autoimmune disorders associated with undiagnosed celiac disease

  • MS
  • Type 1 diabetes
  • Lupus
  • Rheumatoid arthritis
  • Sjögren’s
  • Vitiligo

The WHO definition of celiac disease

  • Characterized by hypersensitivity to gluten
  • Prevalence currently estimated at 1:1,000 worldwide
  • Screening trials suggest prevalence of 1:100
  • Results in weight loss, diarrhea, nutritional deficiencies
  • Caused by villous atrophy
  • May present as extraintestinal manifestations or remain clinically silent

Why celiac disease can’t be ruled out with a single test

  • Can be triggered at any point
  • HLA-DQ2 and HLA-DQ8 genes indicate genetic predisposition

Misconceptions about celiac disease in the US medical community

  • Thought to be digestive disorder, but really neurological
  • Can present with seizures, numbness, constipation, balance issues, celiac cerebellar ataxia

How skin issues are a reflection of what is going on internally

  • Epithelial skin is same tissue as inside

How damage to the small intestine leads to multiple health issues

  • Increased permeability of intestinal wall
  • Leaky blood brain barrier
  • Leaky blood vessels
  • Leaky lungs and skin

The classic symptoms of celiac disease

  • Chronic diarrhea
  • Malabsorption
  • Extreme weight loss
  • Malnutrition

What celiac disease looks like in children

  • Diarrhea, constipation
  • General abdominal pain
  • Failure to thrive
  • Falling off growth chart
  • Short stature
  • Learning disabilities
  • ADD, ADHD, ODD
  • Autism
  • Skin issues (eczema, cirrhosis, acne)
  • Delayed puberty
  • Dental problems
  • Anorexia, obesity
  • Bed wetting

The prevalence of celiac disease in older adults

  • 30% of people diagnosed with celiac disease are over 60

Potential signs of celiac disease in the aging population

  • Dementia
  • Alzheimer’s
  • Vision, hearing loss
  • Urinary problems
  • Cancer diagnosis (especially bowel cancer)
  • Ataxia
  • Arthritis
  • Hair loss
  • Fatigue
  • Osteoporosis
  • Anemia

The elements that get into your blood stream as a result of villous atrophy

  • Toxins
  • Heavy metals
  • Undigested food particles
  • Yeast, fungus
  • Parasites, other harmful bacteria

Top symptoms of celiac disease

  • Chronic anemia
  • Fatigue
  • Muscle, joint pain
  • Depression, irritability
  • Thyroid disorders
  • Infertility issues
  • GI problems (from mouth to rectum)
  • Migraine headaches
  • Psychiatric disorders
  • Seizures
  • Dermatitis herpetiformis
  • Down, Turner or Williams syndrome
  • Cardiomyopathy

The effects of gluten on the brain

  • Anger
  • Depression, anxiety
  • Learning disabilities
  • Lethargy
  • Insomnia
  • Brain fog
  • Schizophrenia
  • Dyslexia

Populations affected by celiac disease

  • Any age, race, gender
  • 3 million people all over the world
  • Study of healthy blood donors in Mexico found unexpectedly high prevalence of tTGA positivity
  • Now recognized as common disease among Middle Eastern and North African populations
  • 1:7 Americans suffer from non-celiac gluten sensitivity (43 million people)

The findings of an economic study by Columbia University

  • Non-diarrheal presentations now most frequent
  • Celiac disease grossly underdiagnosed in US
  • Average delay in diagnosis is 4-11 years for adults in North America
  • Significant improvement in quality of life when patients diagnosed and treated appropriately

The importance of ensuring that medications are gluten-free

Nadine’s recommendations around nutrition for celiac patients

  • Gluten- and dairy-free
  • Ideally Paleo
  • Super-good high fat

Things to consider re: the results of a celiac panel

  • A positive test guarantees intestinal damage
  • Include total IgA and IgG
  • 70% produce a false negative

Additional tests that offer valuable information

  • Fecal fat score (ask for #, over 300 indicates malabsorption)
  • Complete blood count
  • Comprehensive metabolic panel
  • Vitamin D3 level (below 40 ng/ml is critically low)
  • Vitamins A, E & K levels
  • Vitamin B6 & B12 levels
  • MTHFR gene test
  • Magnesium RBC test
  • Zinc level
  • Iodine level
  • B9/Folate level
  • Ferritin level
  • Iron level
  • Thyroid panel
  • Bone density test
  • Lipid panel
  • ANA test (autoimmune issues)
  • ESR test
  • CRP test

Surprising facts around celiac disease contrary to conventional wisdom

  • Only 15% of celiac patients have chronic diarrhea
  • 39% of celiac patients are overweight
  • Shampoos, cosmetics and airborne gluten affect patients with gluten intolerance and celiac disease
  • Super-good high fat diet is essential for celiac patients

 

Resources:

NIH Consensus Statement

“Where Have All the American Celiacs Gone?” in Acta Pediatrica

Montana Gluten Free

“Economic Benefits of Increased Diagnosis of Celiac Disease in a National Managed Care Population in the United States” in the Journal of Insurance Medicine

“Celiac Disease Could be a Frequent Disease in Mexico: Prevalence of Tissue Transglutaminase Antibody in Healthy Blood Donors” in the Journal of Clinical Gastroenterology

“Celiac Disease in Middle Eastern and North African Countries: A New Burden? in the World Journal of Gastroenterology

Recommended Labs

CDC 2013 Report Antibiotic Resistance Threats

Cyrex Laboratories

LabCorps

Glutenpro

EnteroLab

Primal Docs

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

 

Jun 30, 2017

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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