Non-celiac gluten sensitivity (NCGS) or gluten sensitivity also suffers from under-diagnosis. It is too young a condition to know precisely its incidence, but The Center for Celiac Research estimates six percent of the U.S. population suffers, or eighteen million people. Other researchers feel the number is likely much higher and we agree based on our clinical experience.
According to Dr Fasano, the increased incidence of celiac disease in our population likely stems from the affects drugs, toxins, GMO foods, and pesticides inflict on our microbiome, the one hundred trillion organisms that give strength to the immune system and the gut itself. He states the decrease of Lactobacillus organisms, a friendly organism found in the gut of healthy individuals, can trigger celiac disease.
Celiac disease is an autoimmune disease of the small intestine where the lining is damaged, compromising its ability to absorb nutrients. Celiac is associated with a leaky gut and inflammation that can lead to further autoimmune diseases along with other conditions including infertility, neurological problems, osteoporosis and cancer. The “classic” symptoms associated with celiac are bloating, diarrhea, abdominal pain and extreme weight loss.
Gluten sensitivity (NCGS) is caused by a negative reaction to gluten but is not an autoimmune condition like celiac disease. NCGS can be associated with digestive symptoms, such as IBS, but its “extra-intestinal” symptoms are also very common including fatigue, headaches, brain fog, tingling of the extremities, schizophrenia and autism.
The nervous system can be the first system affected with a reaction to gluten and sometimes it’s the only system. Some researchers have contended the link is so strong that if gluten issues were being discovered today for the first time, they would be categorized primarily as neurological and only secondarily as digestive.
Medical journal, Lancet Neurology (2010), stated, "MOST patients with neurological manifestations of gluten sensitivity have few gastrointestinal symptoms."
Journal Pediatrics found children suffering with celiac disease were more likely to develop neurological disorders, at a rate of 51.4%, as compared to control subjects at only 19.9%. The neurologic disorders found included headaches, learning disorders, ADHD, cerebellar ataxia (unstable gait), developmental delays and hypotonia (low muscle tone).
The tremendous failure to diagnose both celiac disease and NCGS may very well stem from the great variety of symptoms associated with both conditions. The “classic” gluten condition manifests symptoms within the digestive tract. This is true and untrue. Celiac disease was classically associated with digestive symptoms but today’s celiac may or may not have those complaints. Therefore, when the symptoms presented are of a non-digestive nature, the suspicion of gluten as the root cause goes way down – hence a missed diagnosis.
The result is continued illness for these individuals, while never receiving a correct diagnosis. Gluten problems are genetic in nature, at least celiac is confirmed as such; many believe NCGS may be as well. As soon as one family member is not diagnosed correctly the result is other family members too having to suffer. A proper diagnosis made, on the other hand, spreads correct health knowledge to more and more family members, creating increasing health throughout the family tree.
“Classic celiac” typically presents with bloating, digestive pain, diarrhea and extreme weight loss, yet many of “today’s celiac” do not manifest in that way. When you add the varying picture of the disease with the poor diagnostic rates, you understand why there was a need to alter the diagnostic criteria.
In 2010, the American Journal of Medicine published the “4 out of 5” rule, stating simple rules were an improvement over complicated algorithms. The American Journal of Medicine was also the same publication giving bona fide recognition to gluten sensitivity (NCGS) as a “real” condition. Based on the findings from more than a dozen of the world’s top celiac researchers, celiac diagnosis was to be henceforth based on the presence of 4 out of 5 positive findings.
The specific findings are:
1. A positive celiac blood test
2. Typical symptoms of celiac disease
3. Symptoms showing improvement on a gluten-free diet.
4. A positive genetic test.
5. A positive intestinal biopsy.
The big alteration of the new criteria was intestinal biopsy no longer was held up as the “gold standard” for diagnosis. Most doctors have felt a positive intestinal biopsy was mandatory; many still do unfortunately. The new criteria have made it clear that is no longer the case, something that should allow more for more accurate diagnosis.
It has been frustrating and upsetting to meet countless number of patients who had the first 4 criteria positive, as mentioned above, but were yet told by their doctors they were not suffering from celiac disease due to a negative biopsy. Of course once they did change their diet, appreciating they did have celiac, they one for one, began to feel much improved!
Those suffering with either celiac disease or non-celiac gluten sensitivity (NCGS) typically notice improvement upon beginning a gluten-free diet. When improvement doesn’t continue or reverts, it doesn’t a gluten-free diet isn’t beneficial, but it points to the presence of other factors that are inflicting stress on the digestive tract, immune system, and other affected organs, causing problematic symptoms to remain.
The reason for this is something we call the secondary effects of gluten, a name we coined when writing our first book, “The Gluten Effect”. The secondary effects include food reactions (over and above gluten), intestinal infections, cross-reactive foods, toxicity and hormonal imbalance. Their presence reduces the effectiveness of a gluten-free diet through putting stress on the effectiveness of the immune system, gut and any other affected organs or systems. Addressing such effects requires additional customized therapies, but they are mostly natural in nature, requiring no scary drugs or surgery.
There isn’t an organ or system of the human body that gluten doesn’t potentially affect, according to research. Gluten isn’t the cause of all disease, but the sheer number of potential adverse reactions gluten can incur warrants ruling it out as a causative agent when health is malfunctioning.
Laboratory testing is always the best first step, but what if your doctor doesn’t comply or your insurance doesn’t cover or you just can’t afford it? In that case, there is nothing wrong or dangerous in following a strict gluten-free diet for 6 weeks and evaluating how you feel. You do need to be strict, however. Adopting a “mostly” gluten free diet is a waste of time. Unfortunately it’s either gluten or no gluten – “low” gluten is fairly worthless. When considering a lifetime of food, a few weeks without a substance that could be adversely affecting your health, is most certainly worth it.
No one ever suffered from a lack of consuming gluten. Human evolution is 2.5 million years long and for 99.9% of that time we ate no gluten. Humans are unable to properly digest the complex protein known as gluten, even if celiac disease or NCGS is not present. It makes you wonder if any of us should be eating it. As Dr Alessio Fasano has been quoted as saying: “We are not born with the destiny to develop autoimmune disease. We are also not born to deal with gluten.”
Gluten, taking the form of celiac disease or gluten sensitivity, can affect the human body in many ways beyond digestive symptoms. I wish to drastically decrease the numbers of those suffering such that more of us can lead healthier, more productive lives. Get tested and if you can’t for some reason, try a strict gluten-free diet for 6- 8 weeks.
If you have questions or need any help, I’m here for you! Consider contacting us for a FREE phone consultation – call 408-733-0400.
To your fabulous health,
Dr Vikki Petersen, DC, CCN, CFMP
Founder of HealthNOW Medical Center
Author of “The Gluten Effect”