NNBA Featured Expert
By Nadine Grzeskowiak, RN, BSN, CEN, The Gluten Free RN
Celiac disease and non-celiac gluten sensitivity (NCGS) have been grossly misdiagnosed or undiagnosed in the United States since the 1950s. Celiac disease is increasing at an alarming rate. The current rate of celiac disease reported is reported to be 1:100. Yet, it is actually 3:100. Families genetically predisposed as carriers of the HLA-DQ2 and/or DQ8 genes, are at exponentially higher risk. Entire families have been diagnosed with celiac disease.
You might think these are rare genes, but they are incredibly common. World-wide, 30-50% of the population carries one or both of these genes.
The only factor known to trigger celiac disease for people with these genes is eating grains that contain gluten — wheat, barley, rye and oats*(due to significant cross-contamination).
If you are a gene carrier, your chances of developing celiac disease at any age, any ethnicity, male or female are good. The recipe for celiac disease is genetic predisposition plus grain consumption and often some type of health disruption triggers celiac disease. The genes are common, people eat grains in the form of flour, pasta, and bread. Gluten hides in many products. All it takes is any disruption of homeostasis and celiac disease is triggered.
What is Celiac Disease? And why is it a public health crisis?
The damage to the intestines caused from eating gluten is called villous atrophy. Your entire 20-foot long small intestine is lined with villi, which looks like pink shag carpeting. The health of the intestinal villi are of vital importance because:
- the vast majority of the nutrients from the food is absorbed into the body
- intestines comprise 70-90% of your immune system
- if your intestines are inflamed so is the rest of your body, think any ‘-itis’
- villous atrophy is organ damage
- it can take 6 months to years on a 100% gluten free diet to heal the intestinal damage
- increased permeability of the intestinal wall allows gluten, bacteria, parasites, viruses and other substances to enter the blood stream
- if you have increased permeability of the intestinal wall or “leaky gut”, you also have a leaky blood brain barrier, leaky lungs. Any epithelial tissue is likely leaky
- if uncorrected there is an increased risk for bowel cancer and lymphoma
- over 300 signs or symptoms can be experienced throughout the body
- while gastrointestinal symptoms seem obvious, the majority of damage is neurological
In Italy, it takes 2-3 weeks to get a diagnosis of celiac disease.
Remarkably, in the United States it takes an average 9- 15 years to get a correct diagnosis, if ever. In 2004, the National Institute of Health proposed a mass screening for celiac disease in the United States. At the same meeting they promoted an education program for all health care providers on the topics of celiac disease and NCGS. Neither of these recommendations came to fruition. 15 years later, despite the fact that CD and NCGS meet the World Health Organization criteria for a mass screening, it hasn’t occurred. Nor has the education program been instituted. Medical care providers are not recognizing, testing for or diagnosing people correctly. Tragically, some still think a gluten free diet is a fad.
Nurses are in a unique position to advocate for our patients.
Recognition, recommended testing, patient education and follow-up are all crucial components that nurses are skilled at performing. Nurses must be educated to recognize, recommend testing, counsel and follow-up patients for CD and NCGS.
If we truly want to address the opioid epidemic, the suicide epidemic, the diabetes epidemic, the metabolic disorder epidemic, the NASH/NAFLD epidemic, Alzheimer’s epidemic, Autism epidemic and whatever epidemic comes next, along with the burden of disease we face as a country, we must approach this proactively. It is time to remedy the gaping knowledge deficits related to celiac disease and NCGS.
If you think celiac disease doesn’t affect you, your family or your friends, think again.
What you eat matters. Do you know if you are a gene carrier for HLA-DQ2 and/or HLA-DQ8? Do you have deficiencies in Vitamin D, B12, or Zinc? Are you chronically anemic? Do you have osteopenia or osteoporosis? Do mental health issues run in your family? Anxiety? Anger issues? Depression? Schizophrenia? Ataxia? Dementia? Are your grandchildren falling off the growth chart? Does someone you know have issues with infertility? Learning disabilities? Downs Syndrome? Turner Syndrome? Williams Syndrome? Auto-immune issues such as type 1 diabetes and MS? Chronic diarrhea? Chronic constipation? IBS? IBD? Migraine headaches? And the list goes on and on.
It may seem as if every symptom can be related to celiac disease and NCGS.
In reality, almost every symptom can be related to increased intestinal permeability, disrupted microbiome, inflammation and nutritional inadequacies.
Our overall health is connected to the health of our intestines. It is vital that your intestines are healthy and intact. Find out today if you are a gene carrier for DQ2/DQ8. Get a comprehensive celiac disease antibody panel. Request a nutritional lab panel for yourself. Actively look for celiac disease and NCGS like they do in Italy. Don’t be surprised when you find. Celiac Disease and NCGS have been there all along, waiting to be discovered. Now healing can begin.
Since 2007, Nadine Grzeskowiak, RN, BSN, CEN has been trademarked as the Gluten Free RN since. She was completely cured from multi-system organ failure simply by adopting a gluten free, now Paleo diet. Her mission is to educate people globally about celiac disease and NCGS: empowering them to improve their health and quality of life with food. Nadine is an author, podcaster, consultant, expert legal witness, and mountain climber. She is launching a 2-day course ‘Celiac Disease and NCGS for Nurses and Health Care Providers’ in Oregon in 2019 and will offer the seminars nationally in 2020. Seminars are approved for 16 continuing education hours by the ONA and accredited by the ANA. Go to GluteFreeRN.com for more information and to registration.