By Dr. Vikki Petersen, DC, CCN
Groups like the NFCA are working tirelessly to increase awareness of celiac disease. Why?
Celiac disease is a dangerous autoimmune disease that is known to be associated with over 300 signs and symptoms, including associated diseases and conditions.
Currently in the U.S., we diagnose a mere 5% of those millions who suffer.
The time it takes to receive a diagnosis is a staggering number of years – six to ten on average.
Affecting 1% of the population, celiac disease is the most common lifelong disorder in the U.S. and Europe.
Obviously, there is good reason to work hard in raising awareness of this devastating condition. It might not be easy to maintain a gluten-free diet, but speak to someone who drastically improved his or her health by removing gluten, and he or she will tell you it’s a small price to pay.
Now let’s assume that your blood test for celiac comes back negative. Your doctor tells you that gluten is not a contributing factor to your ill health.
Is that correct? Maybe - maybe not. Let’s explore this further.
There is another gluten-related condition that, like celiac disease, is a cause of ill health. It’s called gluten sensitivity, and these are some things you should know about it:
1. Gluten sensitivity is currently thought to afflict 6% of Americans.1 Research has just begun in the area, and I think we will see that number increase as research continues.
2. Research indicates that an estimated 50% of gluten sensitive patients are HLA-DQ2/DQ8 positive, meaning that gluten sensitivity is not limited to those with the celiac gene.
3. Further, research has shown that gluten sensitivity is not an autoimmune disease, but rather immune-mediated. This means that it does not cause the same destruction of the small intestine seen in celiac disease.
4. Like celiac, gluten sensitivity affects many different systems of the body. A good example is schizophrenia. While 1% of schizophrenics have celiac disease (the same as the general population), a full 20% have gluten sensitivity.2,3 At my practice, I have seen gluten sensitivity cause digestive problems, hormonal imbalance, neurological issues and many, many more.
5. Exploring for the presence of gluten sensitivity is different than testing for celiac disease. Currently, there is no one test that can be used to diagnose gluten sensitivity. Keep reading for an understanding of what current guidelines the medical community is using to diagnose gluten sensitivity.
Although this area is still in its infancy, the existence of the condition is no longer disputed, so it’s very important to explore gluten sensitivity if this is a causative factor in your health issues. First and foremost, gluten sensitivity can only be diagnosed once celiac disease is excluded.
So. what should one do after receiving a negative celiac test? Below are a few options:
Your clinician should rule out a wheat allergy in addition to excluding celiac disease as a diagnosis.
To rule out celiac disease after a negative celiac test, the next step is to undergo an endoscopy with biopsy to look for intestinal damage. If the biopsy does not indicate celiac pathology, celiac disease can be excluded.
A trial of the gluten-free diet is the next step. The resolution of symptoms followed by the implementation of a double-blind gluten-free diet will confirm a gluten sensitivity diagnosis.4
Finally, there is also the option of genetic testing. This is a simple procedure that will share information about the presence of genes that code for celiac disease, HLA-DQ2/DQ8. A negative gene test can help to exclude celiac disease.
With celiac diagnosis rates still low and gluten sensitivity just now emerging as a health issue, an astounding portion of the American population is affected by a condition they have no inkling of, and may never know about unless awareness increases.
Even if we became ‘perfect’ at diagnosing celiac disease, there is still the problem of gluten sensitivity. Millions of people affected by gluten could remain suffering because doctors are not aware of gluten sensitivity.
I salute what NFCA is doing for the country and am happy to lend my shoulder to the wheel of increasing awareness. While we hopefully will have a highly sensitive test for gluten sensitivity soon, in the meantime there is nothing wrong with consulting your doctor about trying a strict gluten-free diet for 30 days to see how you feel. (Just remember to get tested for celiac first!) Many of my patients who went on to become ‘miracle stories’ discovered their gluten sensitivity just that way.
1. Sapone et al. Divergence of gut permeability and mucosal immune gene expression in two gluten associated conditions: celiac disease and gluten sensitivity. BMC Medicine 2011, 9:23 (http://www.biomedcentral.com/1741-7015/9/23)
2. Dickerson, F., Stallings, C., Origoni, A., Vaughan, C., Khushalani, S., Alaedini, A. and Yolken, R. (2011), Markers of gluten sensitivity and celiac disease in bipolar disorder. Bipolar Disorders, 13: 52–58. (http://onlinelibrary.wiley.com/doi/10.1111/j.1399-5618.2011.00894.x/full)
3. Samaroo, D., Dickerson, F., Kasarda, D., Green, P., Briani, C., Yolken, R., Alaedini, A. (2010), Novel immune response to gluten in individuals with schizophrenia. Schizophrenia Research, 118: 1-3. (http://www.sciencedirect.com/science/article/pii/S0920996409003855)
4. Fasano, A. The spectrum of gluten intolerance disorders: please welcome gluten sensitivity, the new kid on the block. Dr. Schar Preconference Workshop on Gluten Sensitivity, International Celiac Disease Symposium. Oslo, Norway. 19 June 2011.
About Dr. Vikki Petersen
Vikki Petersen, DC, CCN, is founder of the HealthNOW Medical Center in Sunnyvale, CA, and co-author of The Gluten Effect. Dr. Petersen has been published in national and international medical journals, newspapers and magazines for her cutting edge work in the field of gluten sensitivity. Her commitment to increase the awareness of gluten sensitivity nationally is well recognized. She has a been a featured speaker at the annual Gluten Sensitivity & Celiac Forum held in northern California. HealthNOW Medical Center is a destination clinic, treating patients from all over the country.