By Dr. Vikki Petersen
I recently saw an “Ask the Doctor” question on the medical section of a popular news website. The individual asked about degrees of gluten sensitivity. She already knew that she didn’t have celiac disease, but she wanted to know if gluten was still a problem for her. Much of the data shared was accurate, but there was some misinformation disseminated that I wanted to point out so that you won’t be confused or misinformed. To define our terms, gluten intolerance is used as an umbrella condition that embraces both celiac disease and gluten sensitivity.
Celiac disease is estimated to affect 1% of our population with that number increasing to 4% with age. Gluten sensitivity is conservatively estimated to affect 10% of our population (remember the research is very young) which makes it an extremely common condition. Personally I believe that we’ll find gluten sensitivity to affect upwards of 30% of our population, but time will tell.
Unfortunately this knowledge is not yet widely known among clinicians as evidenced by the woman who sent in her question. And I quote: “I know that I’m sensitive to carbs but I wanted to know how sensitive I was to gluten. I had a test taken by a nutritionist, and it came out positive. So I wanted to get tested by an official M.D., which I did. He tested me for celiac disease, even though I told him I didn’t have it. He didn’t understand when I told him that gluten sensitivity has different degrees of impact.”
All too often patients who suspect gluten intolerance are tested only for celiac disease. The poor sensitivity of the tests aside (there are many false negatives) omitting a test for gluten sensitivity easily misses diagnosing millions of people who are suffering from the ill effects of gluten. The doctor who wrote the answer apparently interviewed Dr Joseph Murray of the Mayo Clinic. Dr Murray is someone I respect highly but I do have to disagree with some of the information that he is attributed to stating.
Before I mention my specific disagreements, I do want to note for the record that individuals are not always quoted correctly and this very well could have happened here. Just yesterday I had the same thing happen, when I saw a quote attributed to me on a website that was inaccurate.
Okay, let’s get on to what was said, what I disagree with and what the truth is in my opinion. Dr Murray is quoted as calling one version of gluten sensitivity “celiac lite” and stating that the person doesn’t have the positive tests for celiac disease but has digestive symptoms that benefit from a gluten-free diet. He also states that non-celiac gluten sensitivity does exist but defines it the same as “celiac lite” and mentions that the patient is often diagnosed with irritable bowel syndrome or IBS. My disagreements with the above are: First, calling a condition that creates depression, migraines, obesity, fatigue, schizophrenia and pain ‘lite’ is insulting to those who suffer from it. None of the 100s of symptoms and conditions associated with gluten sensitivity are ‘lite’, they are serious and potentially life threatening. In fact in the Journal for the American Medical Association, fellow American researcher Dr Peter Green cites Dr Ludvigsson’s findings from Sweden, that undiagnosed gluten intolerance increases your mortality rate from all causes. Relegating the symptoms associated with gluten sensitivity to only those associated with digestion is not only inaccurate but does a grave disservice to the concept of increasing awareness. The facts are that neurological symptoms from gluten outnumber digestive ones greatly.
One of the biggest hurdles we have to surmount is overcoming the false idea that gluten only creates digestive complaints. This is one of the reasons that our diagnosis rate is so pitifully low (5%), doctors don’t think to check their patients for the condition. Dr Murray apparently quoted a recent Australian study published in the American Journal of Gastroenterology whereby researchers acknowledged the existence of gluten sensitivity but were unable to determine its cause.
That may be the conclusion of those researchers but we do know that gluten sensitivity results from the immune system reacting in a negative fashion towards gluten. It may not be the exact same reaction as is seen in celiac disease, but that makes it no less serious. The hundreds upon hundreds of patients that we have personally seen in our clinic whose health improvement was miraculous because we discovered them to be gluten sensitive, is truly vast. These patients did not have celiac disease but they were gluten sensitive and the cause was a negative reaction to gluten that occurred in various systems of their body.
The doctor answering the question went on to state to the reader that there was no reliable test for gluten sensitivity, so whatever her nutritionist ordered was not medically approved. There certainly IS a reliable test. And one of the best and substantiated by research as valid is also free – eliminate gluten from your diet for 30 days and see how you feel. If you notice an improvement, that is considered to be a valid test. There is an anti-gliadin antibody test that measures the body’s immune system response to the protein gluten. If the body doesn’t consider the protein to be a problem then it wouldn’t make something called ‘antibodies’ against it. This test measures this reaction. The new lab test by Cyrex Labs expands upon the above about 10 times by analyzing a potential immune reaction to many different parts of the gluten protein. The anti-gliadin antibody is just one part, the Cyrex test has 10 aspects of the protein that it measures, thereby increasing accuracy dramatically. The test is also a celiac panel, making it quite comprehensive. Further, genetic testing exists for gluten sensitivity. These are not the same genes as for celiac disease, but they can be measured and I personally have found them to be very accurate.
Lastly, telling someone that a test isn’t medically approved is insinuating that it’s invalid or worthless. Our medical profession really shouldn’t be casting stones considering it only diagnoses 5% of the celiacs suffering. If ‘medically approved’ tests were effective, wouldn’t we have a better percentage to show for it? Should 15% of the United States population (at least!) simply continue to suffer and not identify what’s really causing their health problems until the medical majority ‘deem’ that a test is now approved? I think not.
She also told the reader that if her symptoms resolved after one month and the dietary change didn’t stop working several months later, than she is likely gluten sensitive. You may wonder what my disagreement is here, considering I myself state above that eliminating gluten for a month is a valid test. It’s not that part that I have a problem with, it’s the section where she states that the dietary change ‘doesn’t stop working’ several months later.
Let me explain: I’ve been working with patients suffering from celiac disease and gluten sensitivity for almost two decades, and I can tell you that often the initial benefits that patients notice when removing gluten don’t always stay corrected. Why? It’s not because gluten isn’t the problem, it’s because, like peeling layers of an onion, there is another layer of health issues that needs to be addressed. This is why I specialize in treating the secondary effects of gluten. If removing gluten from the diet was the only thing a gluten intolerant individual had to do, optimizing the health of these individuals would be easy.
Unfortunately removing gluten is often just the beginning. Now don’t get discouraged, the secondary effects are not difficult to treat, nor do they need to take a lot of time. They simply need to be tested for and treated appropriately in order to truly regain optimal health. So it’s not abnormal for this to occur and if everyone who had a symptom return then decided that gluten wasn’t really their problem, we would have a lot of needlessly ill individuals doing more harm to themselves.
And finally, the doctor informed her reader that people often feel better on a gluten free diet because they are eating less food overall due to fewer choices. Really? Well I don’t find that to be the case at all. My practice is in Silicon Valley, California, a major metropolitan area. The reader was from Oakland, also a large city nearby and the doctor answering her question was too local. So while I could have cut her some slack if she was writing from Arkansas or some small town where gluten-free products were not widely available, making such a statement from a large city really made no sense to me. Not only are there abundant sources of food that are naturally gluten-free including every fruit, vegetable, nut, seed, bean, legume and animal product (eggs, fish, meat), there are also an abundance of typically gluten containing foods that are widely available gluten-free.
I hope you find this to be helpful. I am committed to educate and increase awareness of gluten intolerance to this planet. Every inroad we make in this area saves lives. Please let me know any questions that you have. HealthNOW Medical Center’s destination clinic treats patients from across the country and internationally. We are here to help!
To your good health,
Dr Vikki Petersen, DC, CCN
Founder of HealthNOW Medical Center
Co-author of “The Gluten Effect”