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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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Why a Gluten Challenge is NOT Recommended EP032

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

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Recommended Labs and Follow-up for Celiac Disease and Gluten Intolerance EP014


Freeze your poop and mail it to Texas!

 In all seriousness, a stool analysis can offer vital information about your body’s absorption of fat and nutrients, and today the Gluten Free RN explains the significance of knowing your fecal fat score and other baseline labs that can offer clues about how gluten has adversely affected your health.

Nadine outlines recommended labs for celiac disease and gluten intolerance, discussing how each test can inform the way you tweak your diet or add necessary supplements to your health care routine. She also reviews the importance of follow-up labs to track how you are healing and help you get better, faster!

 What’s Discussed: 

The importance of standardization in celiac testing and follow-up labs

 Things to consider re: the results of a celiac panel

  • 70% produce a false negative
  • A positive test guarantees intestinal damage
  • Lab to lab variability can be problematic
  • Must include total IgA and IgG
  • Interpretation can be problematic
  • Ask for a hard copy of your results

 Why a “gluten challenge” is dangerous

  • No medical or social reason to do so
  • May cause organ damage

 Additional tests that can 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

 How to obtain reimbursement for labs

 Why a diet change is preferable to medication in lowering cholesterol

  • Statin drugs don’t treat the underlying cause of chronic inflammation
  • Still at risk for heart attack and stroke

 What a stool analysis can tell you about your microbiome

 Why you should avoid food allergy testing in the first year of a gluten-free diet

 Resources Mentioned:

 Cyrex Labs

 EnteroLab 

Connect with Nadine: 

Instagram

Facebook

Contact via Email

Books by Nadine:

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