Having Celiac Disease Increases Your Mortality Risk by 4X

We live in a country that diagnoses a mere 10% of those suffering from celiac disease. Considering that undiagnosed celiac disease raises your risk of mortality 4x over the general population, plus, as an autoimmune disease, it increases your risk of developing other autoimmune diseases, our shoddy ability to diagnose the disease should be addressed urgently.

One of the misconceptions affecting our ability to diagnose the celiac disease quickly and accurately is the pervasive thought among general practitioners and gastroenterologists that the disease primarily presents as a digestive one. It is thought that a patient will primarily complain of digestive problems, most commonly diarrhea, bloating, and pain. Nothing could be further from the truth.

I too used to share this belief. But the more we tested patients and removed gluten from their diet for a 4 to 6-week trial, the more we discovered that many patients had symptoms of a non-digestive nature that responded beautifully to a gluten-free diet. When migraines, joint pain, skin conditions, and many more, began to disappear, I soon realized that trying to fit celiac disease and gluten sensitivity into solely “digestive disease” box, was missing a vast array of other problems that responded to a gluten-free diet.

Many Celiac Patients Have Zero Digestive Problems

Patients often have absolutely no digestive complaints. Instead, they may complain of skin conditions, fatigue, headaches, joint pain, depression, anxiety, reproductive problems, schizophrenia, autism, or ataxia (unsteady gait). Research study after research study concludes with the authors of the study imploring clinicians to take heed of the various symptoms associated with celiac disease and gluten sensitivity, beyond those of digestion.

Patient after patient reports that their doctor refuses to test them for celiac disease because they don’t complain of the standard digestive symptoms – these doctors are uninformed. Other patients report their doctor insists they need an intestinal biopsy to confirm their celiac diagnosis. These doctors are also uninformed according to the latest algorithm for celiac diagnosis. Other doctors state there’s no such thing as gluten sensitivity – again they are uninformed. The world’s leading researchers on the subject have conclusively determined gluten sensitivity is a very real condition and must not be ignored.

My personal pledge is to continue to write, lecture, blog, and video until the general awareness level of clinicians and laypersons alike has risen to the point that we are highly effective in diagnosing those who suffer. How this will affect our health status and longevity only time will tell, but I promise you it will improve it dramatically.

Research Proves It

As an example of the above, I want to tell you about a wonderful study done by Dr. Hadjivassiliou and other researchers that were published in the British Medical Journal, The Lancet. In the article entitled “Gluten sensitivity: from gut to brain” the diverse manifestations of gluten intolerance were discussed.

They reviewed that while neurological problems associated with gluten were first reported in 1966, it was not until 30 years afterward (1996) that gluten was proven to, at times, manifest solely as a neurological problem with no evidence of digestive abnormality. They went on to state that the idea the body could be affected in an area not including the digestive tract as the sole presentation, with no small intestine destruction (villous atrophy), has only recently been accepted. The authors then make the statement that, in fact, most patients who present with neurological manifestations of gluten sensitivity have no digestive symptoms. And this most certainly includes patients with celiac disease.

Here’s a direct quote: “Patients with celiac disease might not have gastrointestinal symptoms either.” The study went on to state that the typical test for celiac disease, tTG, is more appropriated labeled tTG2 as it turns out there is 9 total transglutaminase (TG) enzymes. And while tTG2 is accurate for classic celiac disease and the villous atrophy that accompanies it, it is not at all accurate for skin conditions such as DH (dermatitis herpetiformis) that is more associated with tTG3, nor is it accurate for those with neurological problems such as ataxia (unstable gait), seizures and the like, where tTG6 is found to be a more accurate measurement.

The problem is that tTG2 is the only tTG test commercially available when a celiac panel is ordered. The other two are only found predominantly in research facilities and in the Cyrex panel we run here at Root Cause Medical Clinic. As of this writing, we don’t yet know what the remaining six TG enzymes affect. Could it relate to hormone balance, thyroid, liver, heart? Only time and further research will reveal the answers.

No Wonder We Miss Diagnosing 90% of Those Who Suffer

Did the title of this article surprise you? Well here is what I am referring to. The researchers in this study stated: “Less than 10% of patients with gluten ataxia will have any gastrointestinal symptoms but a third will have evidence of enteropathy on biopsy.” What this means is that the reason we only diagnose 10% of our celiacs (and likely even less of those suffering from gluten sensitivity) is that we don’t know what to look for.

The clinicians in this country are frequently unaware of the association of gluten and its ability to affect literally every system in the human body. They are stuck in an algorithm that is terribly outdated and absolutely incorrect.

I hope you found this information helpful. Please share it with others, both laypersons and clinicians alike. Awareness needs to be increased drastically on both sides of the equation.