We live in a country that diagnoses a mere 5% 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 celiac disease quickly and accurately is the pervasive thought amongst 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.
Patients more often than not will 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 imploring clinicians to take heed of the various symptoms associated with gluten intolerance, including celiac disease and gluten sensitivity. Yet, patient after patient continues to report that their doctor refuses to test them for celiac disease because they have no complaints to warrant such a potential diagnosis.
So what can we do? My personal pledge is to continue to write, lecture, blog and video until the general awareness level of clinicians and lay persons alike has risen to the point that we are effective in diagnosing those that suffer. How this will affect our health status and longevity only time will tell, but I promise you it will improve it dramatically.
As an example of the above, I want to tell you about a wonderful study done last year by Dr Hadjivassiliou and others that was published in the British Medical Journal, The Lancet. In the article titled “Gluten sensitivity: from gut to brain” the diverse manifestations of gluten intolerance was 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 manifest solely as a neurological problem with no evidence of digestive abnormality. They went on to state that the idea that the body could be affected outside 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 digestives 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 are 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) where tTG6 is found to be a more accurate measurement.
The problem is that tTG2 is the only TG test commercially available. The other two are only found in research facilities (as of this writing) and we don’t even know what the remaining six TG enzymes affect. Could it be hormonal related, thyroid, liver? Only time and further research will reveal the answers.
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 5% of our celiacs (and likely even less of those suffering from gluten sensitivity) is because we don’t know what to look for. The clinicians in this country ignore, or are unaware of, the association of gluten intolerance and its ability to affect literally every system in the human body. They are stuck in an algorithm that is terribly dated and absolutely incorrect.
I hope you found this information helpful. Please share it with others, both lay persons and clinicians alike. Awareness needs to be increased drastically on both sides of the equation.
If you are wondering if you have a problem with gluten or have removed gluten and still have some symptoms that bother you, please feel free to contact my office for a free consultation. We are here to help!
To your good health,
Dr Vikki Petersen, DC, CCN
Founder of HealthNOW Medical Center
408-733-0400
Co-author of “The Gluten Effect”
Author of the eBook “Gluten Intolerance – What you don’t know may be killing you!”
So true!!! I’d also like to mention that celiac can contribute to a delay in growth or a failure to thrive in children. That is how my nine year old was diagnosed when he was six. his growth just about stopped and luckily we had a wonderful pediatrician who ran the blood test for celiac. At first I was confused since I had always associated celiac with digestive discomfort but a scope confirmed he was celiac.