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disease is grossly underdiagnosed in the United States in large part because the medical community is operating on outdated information about the condition.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

 

Posted by Nadine Grzeskowiak, RN

Nadine is a 'food is medicine’ activist and is very proud of her work to educate all people about the power of food in health and wellness. Nadine is an expert consultant, professional speaker with over 1500 lectures to date, author of DOUGH NATION: A Nurse's Memoir of Celiac Disease From Missed Diagnosis to Food and Health Activism, podcaster, mom and former emergency/trauma/critical care nurse. Nadine is co-authoring her next book on the science of celiac disease.

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