90% of Some with Celiac Disease Have No Digestive Complaints
Having Celiac Disease Increases Your Mortality Risk by 4X
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.
I too used to share this belief. But the more we tested patients and removed gluten from their diet for a 30 day trial, the more we discovered that many patients had symptoms that were non-digestive 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 a ‘digestive system’ box, was missing a vast array of other problems that responded to a gluten-free diet.
Many Celiac Patients Have No Digestive Problems
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 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 – according to their uninformed doctor. 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.
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 was published in the British Medical Journal, The Lancet. In the article entitled “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, at times, 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 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 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 tTG test commercially available. The other two are only found predominantly in research facilities (as of this writing I know of only one lab that will soon provide a tTG6 test soon) and we don’t even 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 95% 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 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 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 lay persons and clinicians alike. Awareness needs to be increased drastically on both sides of the equation.
Do You Need Help?
If you are wondering if you have a problem with gluten or have removed gluten and still have some symptoms that bother you—contact us for a FREE CONSULTATION. Call (408) 733-0400 to schedule. If you are not local to us, our DESTINATION CLINIC treats patients from across the country and internationally. We will help you find the underlying root cause!
To your health,
Dr. Vikki Petersen
IFM Certified Practitioner
Founder of HealthNOW Medical Center
Author of “The Gluten Effect”
Author of eBook: “Gluten Intolerance – What You Don’t Know May Be Killing You!”