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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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Celiac Disease for Health Care Providers EP031

Celiac disease is grossly underdiagnosed in the United States in large part because the medical community is operating on outdated information about the condition. And despite the recommendations of the National Institute of Health back in 2004, we have yet to implement a mass screening for celiac disease, and health care providers remain alarmingly uninformed.

The Gluten Free RN is taking steps to remedy the situation by sharing the basics for medical professionals. Today she covers the WHO’s definition of celiac disease, how our understanding of the condition has change over time, and some common misconceptions about celiac disease. She also explains the top symptoms, recommended testing for celiac disease and gluten sensitivity, and the neurological nature of the disorder.

Listen in to learn what health care providers need to know about this undiagnosed epidemic, the complex web of health issues that may result from undiagnosed celiac disease, and why it is important to have a high index of suspicion and include celiac testing on every differential diagnosis. Help your patients go gluten-free and collect something other than autoimmune disorders! 

What’s Discussed: 

The standard of care in the US

  • Providers should have diagnosed at least 1% of patients with celiac disease
  • Undiagnosed for 70 years, must overcome to prevent further pain and suffering

The goals of Nadine’s consulting business

  • Works with facilities to protect celiac patients
  • Ensure compliance with ADA

How the media portrays the gluten-free lifestyle

  • Dissuades people from adopting diet (program sponsors influence messaging)
  • Negative headlines

How our understanding of celiac disease has changed over time

The recommendations of the 2004 NIH consensus meeting regarding celiac disease

  • Mass screening (meets WHO criteria)
  • Education for health care providers

The World Health Organization criteria for mass screening

  • Early clinical detection essential
  • Condition is common
  • Screening tests highly sensitive and specific
  • Effective treatment available
  • Untreated condition leads to complications

The autoimmune disorders associated with undiagnosed celiac disease

  • MS
  • Type 1 diabetes
  • Lupus
  • Rheumatoid arthritis
  • Sjögren’s
  • Vitiligo

The WHO definition of celiac disease

  • Characterized by hypersensitivity to gluten
  • Prevalence currently estimated at 1:1,000 worldwide
  • Screening trials suggest prevalence of 1:100
  • Results in weight loss, diarrhea, nutritional deficiencies
  • Caused by villous atrophy
  • May present as extraintestinal manifestations or remain clinically silent

Why celiac disease can’t be ruled out with a single test

  • Can be triggered at any point
  • HLA-DQ2 and HLA-DQ8 genes indicate genetic predisposition

Misconceptions about celiac disease in the US medical community

  • Thought to be digestive disorder, but really neurological
  • Can present with seizures, numbness, constipation, balance issues, celiac cerebellar ataxia

How skin issues are a reflection of what is going on internally

  • Epithelial skin is same tissue as inside

How damage to the small intestine leads to multiple health issues

  • Increased permeability of intestinal wall
  • Leaky blood brain barrier
  • Leaky blood vessels
  • Leaky lungs and skin

The classic symptoms of celiac disease

  • Chronic diarrhea
  • Malabsorption
  • Extreme weight loss
  • Malnutrition

What celiac disease looks like in children

  • Diarrhea, constipation
  • General abdominal pain
  • Failure to thrive
  • Falling off growth chart
  • Short stature
  • Learning disabilities
  • ADD, ADHD, ODD
  • Autism
  • Skin issues (eczema, cirrhosis, acne)
  • Delayed puberty
  • Dental problems
  • Anorexia, obesity
  • Bed wetting

The prevalence of celiac disease in older adults

  • 30% of people diagnosed with celiac disease are over 60

Potential signs of celiac disease in the aging population

  • Dementia
  • Alzheimer’s
  • Vision, hearing loss
  • Urinary problems
  • Cancer diagnosis (especially bowel cancer)
  • Ataxia
  • Arthritis
  • Hair loss
  • Fatigue
  • Osteoporosis
  • Anemia

The elements that get into your blood stream as a result of villous atrophy

  • Toxins
  • Heavy metals
  • Undigested food particles
  • Yeast, fungus
  • Parasites, other harmful bacteria

Top symptoms of celiac disease

  • Chronic anemia
  • Fatigue
  • Muscle, joint pain
  • Depression, irritability
  • Thyroid disorders
  • Infertility issues
  • GI problems (from mouth to rectum)
  • Migraine headaches
  • Psychiatric disorders
  • Seizures
  • Dermatitis herpetiformis
  • Down, Turner or Williams syndrome
  • Cardiomyopathy

The effects of gluten on the brain

  • Anger
  • Depression, anxiety
  • Learning disabilities
  • Lethargy
  • Insomnia
  • Brain fog
  • Schizophrenia
  • Dyslexia

Populations affected by celiac disease

  • Any age, race, gender
  • 3 million people all over the world
  • Study of healthy blood donors in Mexico found unexpectedly high prevalence of tTGA positivity
  • Now recognized as common disease among Middle Eastern and North African populations
  • 1:7 Americans suffer from non-celiac gluten sensitivity (43 million people)

The findings of an economic study by Columbia University

  • Non-diarrheal presentations now most frequent
  • Celiac disease grossly underdiagnosed in US
  • Average delay in diagnosis is 4-11 years for adults in North America
  • Significant improvement in quality of life when patients diagnosed and treated appropriately

The importance of ensuring that medications are gluten-free

Nadine’s recommendations around nutrition for celiac patients

  • Gluten- and dairy-free
  • Ideally Paleo
  • Super-good high fat

Things to consider re: the results of a celiac panel

  • A positive test guarantees intestinal damage
  • Include total IgA and IgG
  • 70% produce a false negative

Additional tests that 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

Surprising facts around celiac disease contrary to conventional wisdom

  • Only 15% of celiac patients have chronic diarrhea
  • 39% of celiac patients are overweight
  • Shampoos, cosmetics and airborne gluten affect patients with gluten intolerance and celiac disease
  • Super-good high fat diet is essential for celiac patients

 

Resources:

NIH Consensus Statement

“Where Have All the American Celiacs Gone?” in Acta Pediatrica

Montana Gluten Free

“Economic Benefits of Increased Diagnosis of Celiac Disease in a National Managed Care Population in the United States” in the Journal of Insurance Medicine

“Celiac Disease Could be a Frequent Disease in Mexico: Prevalence of Tissue Transglutaminase Antibody in Healthy Blood Donors” in the Journal of Clinical Gastroenterology

“Celiac Disease in Middle Eastern and North African Countries: A New Burden? in the World Journal of Gastroenterology

Recommended Labs

CDC 2013 Report Antibiotic Resistance Threats

Cyrex Laboratories

LabCorps

Glutenpro

EnteroLab

Primal Docs

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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What in the World Do I Eat? EP017


“Cheap food is an illusion. There is no such thing as cheap food. The real cost of the food is paid somewhere. And if it isn’t paid at the cash register, it’s charged to the environment or to the public purse in the form of subsidies. And it’s charged to your health.”

–Michael Pollan

Adopting a gluten-free lifestyle can be incredibly overwhelming, and many are resistant to the idea. Maybe you don’t want to give up the foods you love, or you don’t think you can do without pizza and beer. But the truth is that in order to heal, coping is your only option.

 Nadine is here to tell you that going gluten-free is not as difficult as you think. In fact, if it’s hard – you’re doing it wrong! She recommends a number of healthy gluten-free and Paleo-friendly food options, explains how your taste buds will change as you rid your body of addictive proteins, and discusses how to approach your grocer to request gluten-free alternatives. It’s time to stop eating for convenience and begin eating to enjoy high-quality food!

 What’s Discussed: 

Why going gluten-free can be challenging

  • Emotional attachment to food
  • Function as reward/comfort

 How to change your mindset to embrace the gluten-free lifestyle

  • Remember that there is plenty of other food to eat
  • Create a new ‘country’

 Why celiac patients should avoid eating meat from cattle fed on grass treated with glyphosate

  • Celiac patients are trying to heal increased permeability of the intestinal wall
  • Chemical in Roundup can cause ‘leaky gut’

 Nadine’s tips for realizing a healthy gluten-free diet

  • Don’t simply replace gluten-containing with gluten-free products
  • Focus on nutrient dense, whole foods high in good fat
  • Choose organic fruits and vegetables
  • Select 100% grass-fed, antibiotic free meat
  • Avoid dairy (proteins are molecularly similar to gluten)
  • Use almond, coconut or hemp milk and Kite Hill cheese/yogurt
  • Satisfy your sweet tooth with molasses, honey and occasionally maple syrup
  • Pick foods that have been processed very little or not at all
  • Explore new vegetables
  • Try bars when you are on the go (e.g.: Lärabar, EPIC, KIND)
  • Freeze fruits and vegetables to savor year round
  • Consider going Paleo (fruits, vegetables, nuts, seeds, meat, fish and eggs)

 The benefits of turning your lawn into a garden

  • ‘Growing food is like planting money’
  • Allows you to enjoy kale, tomatoes, beans, peas, peppers, squash, etc.

 How to tailgate on a gluten-free diet

  • Explore gluten-free alcohol options (i.e.: Ground Breaker, 2 Towns, honey mead)
  • Try gluten free snack foods like Kettle Brand or Jackson’s Honest chips and Jilz Crackers
  • Enjoy guacamole, salsa, hummus and pesto dips
  • Sample desserts like Hail Merry Miracle Tarts

 Nadine’s guidelines for selecting healthy foods

  • No more than five ingredients
  • Should be able to picture each ingredient

 Quality sources of fat

  • Bacon
  • Pumpkin seed and nut butters
  • Olive oil
  • Avocados
  • Eggs

 Resources Mentioned:

 Kite Hill

 Ground Breaker Brewing

 2 Towns Ciderhouse

 Kettle Brand Chips

 Jackson’s Honest Chips

 Jilz Crackers

 Hail Merry Miracle Tarts

 Lärabar

 EPIC Bar

 KIND Snacks

 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