Celiac Disease for Health Care Providers EP031
07/07/17 • 48 min
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disease is grossly underdiagnosed in the United States in large part because the medical community is operating on outdated information about the condition.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
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
Previous Episode
Small Intestinal Bacterial Overgrowth and Celiac Disease EP030
Nobody wants bad bacteria, parasites, yeast or food particles hanging around their small intestine! There are a number of causes of small intestinal bacterial overgrowth (SIBO), and undiagnosed celiac disease just happens to be one of them.
The Gluten Free RN is prepared to discuss the complexity of health issues celiac patients must resolve after going on a gluten free diet, one of which may be SIBO. She shares the symptoms of small intestinal bacterial overgrowth, how we test for SIBO, and potential treatments for the condition. Listen in to learn how foods and medication affect the microbiome and alter the environment of your intestines.
What’s Discussed:The complexity of healing once a celiac patient goes gluten free
- Very rarely does diet change heal all associated disorders
- Other issues like SIBO must be treated once intestines heal
The causes of irritable bowel syndrome
- Thought to be caused by stress
- Studies now show food poisoning may be trigger
How food, drink and medication affect your intestines
- Certain food/drink can move in bad bacteria, push out good
- Antibiotics change pH of stomach acid
- Bacteria, parasites, yeast and food particles get into small intestine
The consequences of damaged villi due to undiagnosed celiac disease
- Compromised immune system
- Inflammation
- Body can’t absorb nutrients
The process of healing your intestines
- Takes six months to a year
- Must eliminate all foods that cause inflammation (gluten, dairy, soy, etc.)
- After villi heal, deal with additional health issues (i.e.: SIBO)
- Villi MUST grow back before good bacteria can return
The symptoms of SIBO
- Gas, bloating
- Abdominal pain
- Diarrhea
- Constipation
How to test for SIBO
- Consume sugary drink, then breathe into tube
- Hydrogen sulfate associated with diarrhea
- Methane connected to constipation
- Gives snapshot of what is happening in intestines
How SIBO is treated
- Antibiotics (rifaximin)
- Herbs (i.e.: oregano oil, berberine, neem)
- Fecal microbial transplant
Risk factors for SIBO
- Any course of antibiotics
- Diabetes
- Bowel surgery
- Crohn’s disease
- Undiagnosed celiac disease
“Small Intestinal Bacterial Overgrowth: A Comprehensive Review” in Gastroenterology and Hepatology
Connect with Nadine:‘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
Next Episode
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
- Almost 50 designated gluten-free/Paleo restaurants in Portland
- Farmer’s markets
- Whole Foods, Natural Grocers
- Local food Co-ops (First Alternative, LifeSource)
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
- Seek practitioner with experience reading results
- Request total IgA, IgG
- Consider Cyrex Laboratories, LabCorp or EnteroLab
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
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