Taking a look at Non-Digestive Symptoms

While it seems that “everyone” knows about gluten these days, the sad facts are that close to ninety percent of those suffering from celiac disease remain undiagnosed. As a serious condition that is known to shorten life expectancy, it is a terrible shame to realize that many thousands continue to eat gluten unaware of the damage and ill health it is creating for them. A large study that compiled data from seventeen different research studies concluded that those with celiac disease were at risk of early death from all causes, especially from non-Hodgkin lymphoma, a type of cancer.

Gluten sensitivity, or non-celiac gluten sensitivity (NCGS), as it is more frequently being labeled, suffers the problem of under-diagnosis. Not enough research has occurred on the condition to have a stable estimate of the percentage affected, but it’s clear that it’s greater than the one percent suffering from celiac disease. The Center for Celiac Research estimates that approximately six percent of the U.S. population, or eighteen million people, suffer from gluten sensitivity. Other researchers feel the number is likely much higher and my clinical experience concurs.

According to Dr. Fasano, “during the past 35 years, celiac disease has doubled every 15 years in the U.S.” He feels the increase is coming from the increased damage occurring to our digestive tracts and immune system from the effects of drugs, toxins, GMO foods, and pesticides damaging the gut’s microbiome, the one hundred trillion organisms that are probiotics and give strength to the human immune system and gut. He states the decrease of the Lactobacillus population, one of many probiotics, can trigger celiac disease.

Celiac disease causes an autoimmune reaction to occur in the small intestine, damaging its ability to absorb nutrients, creating a leaky gut and inflammation that can lead to further autoimmune diseases plus other conditions including infertility, neurological problems, osteoporosis, and cancer. The “classic” symptoms associated with celiac are bloating, abdominal pain, diarrhea, and weight loss.

Gluten sensitivity (NCGS) is not an autoimmune condition and is associated with digestive symptoms such as bloating and abdominal pain similar to IBS (irritable bowel syndrome), plus extra-intestinal problems including fatigue, headaches, brain fog, tingling of the extremities, schizophrenia, and autism.

As you can see, both conditions suffer from digestive and non-digestive symptoms alike, and both include neurological-related problems.

There are researchers who have found such a strong link between gluten and the nervous system that they surmise that if the celiac disease was discovered for the first time in our current society, it would likely be classified primarily as a neurological disease and only secondarily as a digestive one due to the pervasive and primary neurological problems associated with gluten.

In 2010, the Lancet Neurology stated, “MOST patients with neurological manifestations of gluten sensitivity have few gastrointestinal symptoms.” The Journal Pediatrics found young patients with celiac disease were more prone to develop neurological disorders (51.4%) in comparison with control subjects (19.9%). These disorders include headaches, hypotonia (low muscle tone), developmental delay, learning disorders, and ADHD, and cerebellar ataxia (unstable gait).

The problem of under-diagnosis, I believe, may stem from the “non-classic” symptoms associated with both conditions. The “snap answer” associated with both celiac disease and NCGS is that both conditions manifest in the digestive tract. That is both true and untrue. When symptoms are of a non-digestive nature, the suspicion of gluten being at the root cause of the problem is very low – hence a missed diagnosis.

The result? Many suffer, get sicker, and often never receive the correct diagnosis. Due to the genetic nature of these conditions, a missed diagnosis in one individual thereby continues that “miss” in other family members, children, etc. A diagnosis found, on the other hand, spread that knowledge to more and more family members, creating increased health throughout the family tree.

I mentioned that the “classic celiac” presents with the symptoms of bloating, digestive pain, diarrhea, and extreme weight loss. The problem is that many celiacs today never manifest the disease in that way. This explains why the criteria for diagnosis have changed to a quantitative approach called the “4 out of 5” rule. In 2010, the American Journal of Medicine published the criteria, stating that simple rules were better than complicated algorithms. As a side note, this was the same publication that gave official recognition to the condition of gluten sensitivity. Based on the culmination of meetings with more than a dozen of the top celiac researchers around the world, a celiac diagnosis was mandated to be made based on the presence of 4 out of 5 positive findings. These findings consist of:

1. A positive celiac blood test

2. Typical symptoms of the disease

3. Symptoms that improve on a gluten-free diet.

4. A positive genetic test.

5. A positive intestinal biopsy.

The big change associated with the new criteria was the intestinal biopsy no longer held the “gold standard” status it had previously. Ask most gastroenterologists about the celiac disease a few years ago (and sadly still today), they would state that a positive intestinal biopsy was a mandatory finding when making a diagnosis. That is no longer the case and something all patients and their doctors should know.

This knowledge should increase the percentage of those receiving a correct diagnosis and save untold numbers from continuing to suffer from ill-health. I well recall my frustration after meeting a countless number of patients who had positive, the first 4 criteria mentioned but were yet told by their doctors that they didn’t need to change their diet because their biopsy was negative. Once I enlightened them that they did indeed have the disease, they were, one for one, grateful for the diet change because they started to feel so much better!

Both celiac sufferers and those with non-celiac gluten sensitivity (NCGS) typically feel much improved once a gluten-free diet has begun. That improvement often doesn’t last, despite a vigilant gluten-free diet. It doesn’t mean that the gluten-free diet isn’t beneficial, but what it does mean is that other factors are putting such stress on the immune system, digestive tract, and other organs that symptoms return.

The cause for this is something I call the secondary effects of gluten, a name we created when we wrote our book “The Gluten Effect”. The secondary effects include such things as other food sensitivities, intestinal infections, cross-reactive foods, toxicity, and hormonal imbalance which can, unfortunately, reduce the effectiveness of a gluten-free diet. It’s not that the gluten-free diet isn’t needed; it absolutely is. The issue is that regaining full immune system strength and healing of the gut, along with any other affected organs or systems, does frequently require additional therapies, and addressing the secondary effects of gluten is key. The good news is that it isn’t difficult and involves no dangerous drugs or surgery.

The truth of the matter is that, according to research, there isn’t an organ or system of the human body that gluten doesn’t affect, potentially. Am I saying that gluten is the cause of all disease and ailments? No, but I am saying that with the potential adverse reactions gluten is known to incur, it definitely is warranted to rule it out as a causative agent when your body isn’t functioning optimally.

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 adversely from the lack of gluten in their diet. Human evolution is 2.5 million years long and for 99.9% of that time, we had no gluten in our diet. Remember, gluten is a complex protein that no human can properly digest, even if they don’t have celiac disease or NCGS. It is for that reason so many are suspect if any of us should be eating it. As a respected researcher, Dr. Alessio Fasano says: “We are not born with the destiny to develop autoimmune disease. We are also not born to deal with gluten.”

The takeaway for you is that both celiac disease and gluten sensitivity can affect the human body in many ways beyond digestive. My desire is to increase our diagnosis of those suffering such that our population can lead healthier and thereby more productive lives. Get tested for both conditions. If you can’t, try a strict gluten-free diet for 6 weeks.

If you have questions or need any help, I’m here for you!