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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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Safely Traveling on a Gluten-Free or Paleo Diet EP036

Wanderlust.

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

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

What’s Discussed: 

The danger of living in a bubble

  • Leads to isolation
  • No way to live

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

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

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

 The challenge of eating out on the road

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

 The fundamentals of a food desert

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

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

 Nadine’s tips for locating safe restaurants

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

 The myth that heat breaks down the gluten protein

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

 How Nadine is able to go without a meal when necessary

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

 Who to talk to when you are eating out

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

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

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

 Nadine’s gluten-free travel supply packing list

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

 The best gluten-free online travel resources

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

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

 Nadine’s upcoming River Cruise on the Danube

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

 The food options available to the gluten-free population

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

Resources:

International Celiac Disease Symposium

Applegate

Kite Hill

Mary’s Gone Crackers

Jilz Crackerz

EPIC bars

Gluten Free Portland Restaurant List

Amy Fothergill of the Warm Kitchen

Ground Breaker Brewing

Whole Foods

Natural Grocers

Find Me Gluten Free

Nima Sensor

EZ Gluten Test Strips

Gluten-Free Globetrotter

Gluten Free Passport

Melodies of the Danube Brochure

Connect with Nadine: 

Instagram

Facebook

Contact via Email

‘Your Skin on Gluten’ on YouTube

Melodies of the Danube Gluten-Free Cruise with Nadine

Books by Nadine:

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