There are a number of misconceptions about celiac disease, even within the medical community! Despite a growing body of research to the contrary, many practitioners still believe celiac disease to be strictly a gastrointestinal issue with a just a few tell-tale symptoms. It’s time to get the facts, and today the Gluten Free RN shares 21 important truths about celiac disease that you need to know.

 Nadine shares her take on the list compiled by Gluten Free Works, covering the truth about who is at risk, the wide variety of neurological symptoms a celiac patient might present, and the components of an optimal treatment plan. As the most common genetic autoimmune disease in the world, it is incredibly important that we understand how gluten exposure can damage the intestines and cause debilitating nutrient deficiencies.

 Nadine also explains why celiac disease often goes undiagnosed and how an astute practitioner is able to accurately interpret biopsies, antibody screenings and lab work. Get familiar with these 21 important facts about celiac disease, and become your own advocate!

 What’s Discussed: 

  1. Celiac disease is the most common genetic autoimmune disease in the world
  • Powerful as consumer group, ‘vote with dollars’
  • Purchasing fewer grains
  • More and more gluten-free products available
  • Choose grass-fed, no antibiotic/hormone meat
  • Look for local, organic, non-GMO produce
  1. Celiac disease is the most commonly misdiagnosed disease in the world
  • Patients often diagnosed with other disorders
  • Gluten-free diet necessary for symptoms to resolve
  1. Celiac disease blood tests are not pass/fail
  • Measure antibody levels
  • Suggest how likely intestinal biopsy will discover damage
  • 70% false negative
  • Anti-TG2 or IgA EMA antibodies indicate gut damage
  1. Celiac disease can affect any genetically predisposed person of every race of gender and can first present symptoms at any age
  • No one can be ruled out
  • HLA-DQ2, HLA-DQ8 indicate genetic predisposition
  • 30% of those diagnosed over age 60
  1. Optimal treatment of celiac disease includes a 100% strict gluten-free diet, nutrient deficiency identification and replenishment, and education and support that meet the physical and emotional needs of the patient
  • May need to eliminate dairy, soy, grains and legumes as well (anything that causes inflammation)
  • ‘Find your people’
  1. Most cases of unresponsive celiac disease are due to inadvertent gluten exposure, where the person is consuming gluten without realizing it
  • May not exhibit symptoms when exposed to gluten (airborne, via cross-contamination)
  • Have expert examine home environment to ferret out potential sources
  1. The average person with celiac disease has a normal body mass index
  • Traditionally thought to be underweight
  • Roughly 33% of celiac patients are overweight
  • Obesity indicates malnourishment (body’s attempt to store cheap energy)
  1. Silent celiac disease refers to a person who tests positive on blood test and villous atrophy on intestinal biopsy, but exhibits no overt symptoms
  • Roughly 50% of those diagnosed on screening exam would claim to have no symptoms
  • Astute practitioner recognizes warning signs
  1. Celiac disease presents submicroscopic damage causing nutrient deficiencies before villous atrophy
  • Damage can occur before endoscopy finds it
  • Marsh 1 damage is first stage, caused by gluten
  • Don’t wait for total villous atrophy (Marsh 4 damage) to adopt gluten-free diet
  • Ask knowledgeable practitioner to review biopsies, antibody screenings and lab work
  1. 50% of people diagnosed with celiac disease exhibit neurological symptoms at the time of diagnosis
  • Neuropathy (numbness or tingling in hands and feet)
  • Seizure disorders
  • Ticks (especially facial)
  • Bell’s palsy
  • Fasciculation of muscles
  • ‘Pins and needles’ in feet
  • Gastroparesis
  • Constipation (paralysis of intestines)
  1. Doctors consider celiac disease to be a gastrointestinal disease
  • Symptoms can be neurological
  • Medical professionals must be astute, recognize all 300 symptoms
  1. Anxiety can be the only symptom of celiac disease
  • Due to nutrient deficiencies
  • Irritability can be sign of gluten sensitivity
  1. Celiac disease tests are not pass/fail
  • Follow up testing should be performed if symptoms don’t resolve
  • ‘Seroconversion’ means can test negative one day, then positive two weeks later
  1. Patient education is the most important predictor of good clinical outcome in celiac disease
  • Find a practitioner to help develop diet for health/lifestyle
  • Pursue body work to repair damage, strengthen body
  1. Celiac disease symptoms can be completely different among family members
  2. Celiac symptoms number over 300, affecting every system and any organ
  1. Symptoms in celiac disease are due to inflammation and/or nutrient deficiencies from chronic intestinal damage
  • Gluten-free diet will heal intestines, eliminate inflammation
  • Requires time, energy and investment in best possible food
  1. Celiac disease diagnosis can take ten years or more from the time symptoms first present
  • Frequently last disease considered by doctors (in for-profit healthcare systems)
  • Countries with universal health care diagnose much more quickly
  1. Celiac disease affects over three million people in the US, yet the vast majority are not diagnosed
  • Symptoms considered definitive diagnoses, treated superficially
  • Type 1 diabetes
  • MS
  • ALS
  • Lupus
  • Sjögren’s syndrome
  • Anemia
  • Osteoporosis
  • Failure to thrive
  • Eating disorders
  • Underlying cause (celiac disease) left untreated
  1. Exposure to gluten is the most important environmental factor in celiac disease
  • Sooner gluten is removed, more likely to achieve full remission
  • If gluten is never introduced, celiac disease will never develop
  1. Although celiac disease is now known to cause over 300 symptoms, the medical community has traditionally instructed doctors that celiac disease affects children, presenting symptoms of diarrhea, wasting muscles, anemia, and abdominal distention
  • Be your own advocate

 

Resources:

Recognizing Celiac Disease: Signs, Symptoms, Associated Disorders and Complications by Cleo J. Libonati

21 Important Celiac Disease Facts You Need to Know…

Gluten Free Works

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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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