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Review of Colombia University Celiac Disease Conference 2018 EP064

When faced with new information, it’s important to consider the source. Stop for a moment and examine whether the material is coming from someone with YOUR best interests at heart. The Gluten Free RN has just returned from the Colombia University Celiac Disease Conference, and she is breaking down the information presented to determine what’s useful—and what might be tainted by the pharmaceutical or food industry agenda.

Nadine begins with a workshop led by General Mills that offered some questionable information about how grains are processed at their factories and a talk led by University of Chicago faculty on the topic of a gluten challenge. She also speaks to the differences between celiac management in the US and countries with universal healthcare like Italy and Australia.

Nadine covers new testing that detects gluten exposure in stool or urine and what that reveals about the systemic nature of gluten damage as well as her take on practitioners who perpetuate the myth that grains are necessary and nutritious. Listen in for the Gluten Free RN’s insight around pharmaceutical treatments for celiac disease and the danger in volunteering for studies backed by drug companies.

What’s Discussed:

The two programs available at Colombia’s 2018 conference

  • Clinical (nurses, RDs and laypeople)
  • International (doctors, scientists, industry and VC)

How celiac disease is managed in Italy

  • Presentation by Dr. Carolina Ciacci
  • Law mandates gluten-free options

Nadine’s frustration with the General Mills presentation

  • Major sponsor of conference
  • Claim to separate grains at factory

Nadine’s take on gluten-free Cheerios

  • Should be avoided, not truly gluten-free

Nadine’s confusion around Dr. Bana Jabri’s comments

  • Wouldn’t put ‘potential celiac patient’ on gluten-containing diet
  • Did not include patients with positive antibody test but negative biopsy

Why the biopsy for celiac disease is problematic

  • Only tests one foot into duodenum
  • GI tract is 30 feet in length

Nadine’s insight on a gluten-free challenge

  • No possible benefit for patient
  • Unnecessary, unethical

The systemic nature of gluten damage

  • New tests detect gluten exposure in stool, urine
  • Urine test indicates passage through every system

Nadine’s stance on pharmaceutical treatments for celiac disease

  • No pill or vaccine will treat or cure CD
  • Harmful to people in studies

The myth that grains are necessary and nutritious

  • Practitioners who perpetuate are ‘toeing company line’

Why it’s important to understand the source of your information

  • Should be untainted by pharmaceutical money, agenda

Australia’s requirements for gluten-free food

  • Standard of less than 3 ppm

Resources:

Celiac Symposium 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 Heal

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FAQ’s About Celiac Disease Answered EP047

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

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

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

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

What’s Discussed: 

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

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

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

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

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

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

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

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

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

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

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

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

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

 ‘Can I eat wheat in Europe?’

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

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

Resources:

Gluten Free RN EP027: Type 1 Diabetes and Celiac Disease

Nima Sensor

EZ Gluten Test Strips

Connect with Nadine:

Instagram

Facebook

Contact via Email

‘Your Skin on Gluten’ on YouTube

Melodies of the Danube Gluten-Free Cruise with Nadine

Books by Nadine:

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

 

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Where Gluten Hides EP046


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

 

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Staying Healthy in the Hospital with Celiac Disease EP044

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: 

Instagram

Facebook

Contact via Email

‘Your Skin on Gluten’ on YouTube

Melodies of the Danube Gluten-Free Cruise with Nadine

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Celiac Disease and the Media EP026

The gluten-free movement is often dismissed in the media as a fad. Even so-called experts actively discredit the gluten-free diet and apply a negative connotation to terms like PWAG. Have you ever wondered why there is so much misinformation about celiac disease and non-celiac gluten sensitivity in the media? And who sponsors the coverage that dissuades people from going gluten-free?

 Today, Nadine explains how the big business of wheat affects which voices we hear in media treatment of the gluten-free movement. In addition, she covers how the for-profit healthcare system in the US affects the timely diagnosis of celiac disease and non-celiac gluten sensitivity.

 Celiac disease is a medical, social and economic issue with political implications. Listen and learn how to choose high quality, nutrient dense foods, and leverage your power as a gluten-free consumer!

What’s Discussed: 

Misinformation in the media

  • Some coverage dissuades from adopting a gluten-free diet
  • Program/print sponsors may be corporations that depend on people eating wheat
  • Wheat/grain industry threatened by rise of gluten-free diet (33% of people in US and Canada on variation of gluten free diet)

The illusion of options in the area of food production

  • 8-10 corporations own nearly every food company
  • Nadine patronizes farmer’s markets, co-ops and local companies

Nadine’s rules for buying food products

  • Label must be clear, easy to read
  • Five or fewer ingredients
  • Must be able to picture each ingredient

The importance of reading labels

  • May be gluten in products that are typically gluten-free (i.e.: pesto, kombucha)
  • Companies are given six months to update labels after making changes
  • Barley and rye are not on list of allergens

Nadine’s story

  • Multi-system organ failure
  • Negative test for celiac disease despite being homozygous gene carrier
  • Healed quickly on a Paleo diet

Why countries with universal healthcare take celiac disease seriously

  • Early diagnosis saves money
  • Finland: 70% of people w/ celiac disease have been diagnosed
  • Italy, UK and Canada: 30-40% have been diagnosed
  • US: Less than 1% of those with celiac disease have been diagnosed

How long it takes to be diagnosed with celiac disease (for-profit vs. universal systems)

  • US: 9-15 years
  • Italy: 2-3 weeks

How doctors/experts discredit gluten-free as a fad

  • Use PWAG as derogatory term
  • Placebo effect
  • Nocebo effect (expect to feel poorly)

The inaccuracy of blood tests for celiac disease

  • 70% false negative

How companies profit from undiagnosed celiac patients

  • Products geared toward people with health issues (i.e.: compression socks, hypoallergenic sheets)

The prominence of wheat as a publicly traded commodity

  • Top export of US/Canada

The health risk associated with genetically modified wheat

The benefits of a gluten-free diet

  • Symptoms resolve
  • No longer need medicine, surgery

Nadine’s advice re: selecting gluten-free products

  • Avoid nutrient deficient gluten-free options (cheap fillers, empty carbs)
  • Focus on high quality, nutrient dense foods

How to leverage your power as a gluten-free consumer

  • Hold food producers accountable (standards, production methods)
  • ‘Vote carefully with your dollar’
  • Speak up when you see inaccurate media coverage

Why you cannot assume that gluten-free menu items are truly free of gluten

  • Uneducated restaurant staff
  • Possibility of contamination, cross-contamination

What a ‘gluten free’ designation means in labeling

  • GIG certification indicates less than ten parts per million
  • Standard in US/Europe is less than 20 parts per million

The Gluten Free RN mission

  • Educate people globally about celiac disease and non-celiac gluten sensitivity
  • Empower people to improve their health and quality of life with food

Resources:

Food Company Infographic

Gluten Intolerance Group

Connect with Nadine: 

Instagram

Facebook

Contact via Email

‘Your Skin on Gluten’ on YouTube

Books by Nadine:

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