FAQ’s About Celiac Disease Answered EP047

Gluten Free RN

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:

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‘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