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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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The Psychology of Eating Gluten Free EP045

We all just want to fit in, so it can be embarrassing to have special needs when it comes to your diet. Whether you are gluten-free, Paleo, or suffering from food allergies, a feeling of isolation is not uncommon. After all, you have to eat differently from the rest of your friends, family, or colleagues—and that makes you stand out. You run the risk of being perceived as picky or annoying, when the truth is that certain foods are toxic to your system!

Today the Gluten Free RN speaks to the psychology of eating gluten-free, explaining the sense of disbelief many gluten-sensitive individuals feel when the food they love turns out to be poison. She discusses ‘food ideology’ and why changing your diet can be so challenging.

Nadine also covers the doubt, mocking, and even anger that celiac and gluten-sensitive individuals face, offering suggestions for building connections with a like-minded, gluten-free community. Listen in as she outlines her approach to dating on a Paleo diet and reassuring family and friends who find a gluten-free diet too restrictive for kids. Learn to be your own best advocate and resist the social pressure to eat the standard American diet!    

What’s Discussed:

Why gluten sensitive patients must be willing to experiment

  • Learn how body works best
  • Identify foods that allow body to heal
  • Pinpoint foods that cause symptoms

A downtown Corvallis business owner’s testimonial

  • Couldn’t get doctor to test for celiac disease
  • Family gave hard time
  • Gluten-free for year
  • Bloating, abdominal pain went away
  • Head clear

How to research the possibility that gluten is causing your symptoms

  • Search PubMed
  • Use both spellings (celiac, coeliac)

Why people are resistant to diet change

  • Subscribe to particular food ideology
  • Media, social pressure to eat standard American diet

The difficulty around getting a celiac diagnosis

The value of preventative medicine

Dating on a gluten-free diet

  • Look for someone open to new ideas
  • Nadine’s partner is supportive, willing to change
  • On food path together
  • Health benefits whether celiac or not

The human need to be part of a community

  • Celiac patients may feel isolated from family, at work/school
  • Find ‘your people’ (gluten-free support group, cross-fit gym)

The global shift to a Western diet

  • Export fast food to world
  • Increased consumption of wheat, barley, rye and oats

Why Nadine recommends a Whole30 diet

  • Remove all grains, dairy, alcohol and sugar
  • Eat meat and fish, nuts and seeds, fruits and vegetables
  • Allows body to reboot
  • Evaluate how you feel

The narcotic-like effect of gluten on the brain

  • Comfort foods (pasta, pizza) contain wheat, dairy
  • Cause chemical reaction in brain

Nadine’s recent experience in hospitals

  • Only nutrient-deficient, packaged foods available
  • Offerings toxic, full of sugar

Nadine’s rules around ingredients in packaged foods

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

Why people on a gluten-free diet are reluctant to tell others

  • Don’t want to be difficult, needy
  • Don’t want to call attention, be seen as ‘other’
  • May be questioned or face anger, mocking
  • Demoralizing to go to restaurant, grocery store (can’t eat 90%)

How to approach neighbors or family who view a gluten-free diet as too restrictive for kids

  • Ensure that kids are healthy, thriving
  • Let them know ‘not missing out’

The psychology of denial

  • Some celiac patients believe okay to cheat
  • Bread crumb, dusting of flour can cause autoimmune response

Nadine’s opposition to a gluten challenge

  • Can cause organ damage
  • Some never recover

The genes that indicate a predisposition to celiac disease

  • HLA-DQ2
  • HLA-DQ8

Resources:

 

Books by Dr. Rodney Ford

PubMed

The Whole30 Program

Nima Sensor

EZ Gluten Test Strips

Connect with Nadine: 

Instagram

Facebook

Contact via Email

‘Your Skin on Gluten’ on YouTube

Melodies of the Danube Gluten-Free Cruise with Nadine

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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