I recently saw an “Ask the Doctor” question on a popular news website. The individual's question involved 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 presented also that I wanted to point out, so that you won’t be confused or misinformed.
To define our terms, I use 'gluten intolerance' as an umbrella term that embraces both celiac disease and gluten sensitivity. Research into gluten sensitivity is still in its infancy. Just a few years ago, researchers were arguing whether or not the condition even existed, and today some major research dollars are being spent to understand it and diagnose it. While that is positive, we still have a long way to go.
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 is attributed to him in this article.
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 over 300 symptoms and conditions associated with gluten sensitivity are ‘lite’; they are serious and potentially life threatening. In fact in the Journal of the American Medical Association, fellow American researcher Dr Peter Green cites Dr Ludvigsson’s findings from Sweden, that undiagnosed gluten sensitivity 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 symptoms 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.
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.
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.
The doctor also told the reader that if her symptoms resolved after one month and the dietary change didn’t stop working several months later, then she is likely gluten sensitive.
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 also local to this same area. 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.