Celiac disease and non-Celiac Gluten Sensitivity (NCGS)
Gluten intolerance resulting in symptoms and illness similar to celiac disease (CD) without meeting diagnostic criteria for CD is a new concept. This concept of non-celiac gluten sensitivity (NCGS) or gluten related disease (GRD) may be a new paradigm that is hard for some people to swallow, especially when I suggest that it affects as much as 10% to 30% of the population.
Wheat gluten as a cause of illness
Gluten ingestion is an avoidable, treatable, and reversible cause of illness in many people. It is contributing to the rising epidemic of autoimmune diseases. Many resist these concepts finding them either unbelievable, unacceptable or both. I believe that their rejection is neither rational nor helpful. It may be reasonable to reject them for cultural or financial reasons though I don’t believe they can legitimately be rejected based on scientific grounds or experience.
Celiac disease not rare and is often missed as a diagnosis
Celiac disease is not rare. CD affects 1 in 100 people in the world. Yet the diagnosis of CD is still frequently missed and/or delayed. It is a common disease that is often undiagnosed or misdiagnosed. It may even be the most common autoimmune disorder. Though the risk is largely genetic, it is preventable by simply avoiding gluten. Autoimmune diseases associated with CD may also be preventable by avoiding gluten.
What doctors remember from medical school about Celiac disease
When I was in medical school over twenty-five years ago, I was taught that CD was rare. In residency we were shown photos of short, emaciated children with skinny limbs and pot-bellies. We were told that their medical history included symptoms of profuse, watery, floating, foul-smelling diarrhea, and iron deficiency anemia. The picture and story was burned into the hard drive of our brains, not necessarily because anyone believed we would see someone with CD in our practice, but because CD was considered rare and odd enough that it was a favorite board examination question. That image and story remains in the mind of most physicians, preventing them from seeing CD in a much broader light.
Blood tests for Celiac disease become available
When I entered subspecialty training in gastroenterology, 13 years ago, specific blood tests for CD were available but still new. We were beginning to order the blood test when classic symptoms of CD were seen without an identifiable cause, or if we happened to sample the small intestine during endoscopy and classic Sprue changes were seen in the intestinal biopsy. CD was still considered somewhat rare. We did not routinely biopsy the small intestine to screen for CD, and genetic tests were not yet available.
Celiac disease is common but gluten sensitivity more common
It wasn’t until Dr. Fasano, a pediatric gastroenterologist from Italy, published a landmark article reporting Celiac disease affected 1/133 people in the U.S that American doctors began thinking more about it. Only recently has it been accepted that family members of people with CD, those with digestive symptoms, osteoporosis, anemia, and certain neurological, skin or autoimmune disorders constitute high risk groups for celiac disease. They have an even higher risk of between 2% to 5%, though most physicians are unaware of these statistics. Every week, using the strict diagnostic criteria, I confirm 2-3 new of CD. I also see 5-10 established CD patients. However, for every identified CD patient there are 3-10 who have clinical histories consistent with CD, but who fail to meet the diagnostic criteria. Yet they respond to a GFD. Many have suggestive blood test results, biopsies and or gene patterns but some do not.
Genetic link to Celiac disease and gluten sensitivity
More than 90% of people proven to have CD carry one or both of two white blood cell protein patterns or human leukocyte antigen (HLA) patterns HLA DQ2 and/or DQ8. However, so do 35-45% of the general U.S. population, especially those of Northern European ancestry. Yet CD is present in only 1% of the same population. DQ2 or DQ8 are considered by some experts to be necessary though not sufficient to develop CD. However, CD without those two genes has been reported.
Neurological problems and other gluten related illnesses
Other gluten related diseases including dermatitis herpetiformis, the neurological conditions of ataxia and peripheral neuropathy, and microscopic colitis have been described in DQ2 and DQ8 negative individuals. The DQ genetic patterns found in other gluten related diseases and associated with elevated stool antibody tests indicate that many more people are genetically at risk for gluten sensitivity. Furthermore, the response of numerous symptoms to gluten-free diet is not limited to people who are DQ2 or DQ8 positive.
Gluten free diet is the only treatment for Celiac disease and gluten sensitivity
Most celiac experts agree upon and feel comfortable advising people who meet the strict criteria for the diagnosis of CD: they need to follow a life-long gluten-free diet. Controversy and confusion arises when the strict criteria are not met, yet either patient and/or doctor believe that gluten is the cause of their symptoms and illness.
Wheat-free , yeast-free and low carbohydrate diets are popular but not adequate
Many alternative practitioners advise wheat-free, yeast-free diets, which are frequently met with favorable response to what is really a form of GFD. Similarly, the popularity and successes of low carbohydrate diets require adherence to a diet that has been credited with improvement of headaches, fatigue, bloating, musculoskeletal aches, and an increased general sense of well-being that is self-reported by many dieters. I believe this is because of the low gluten content. Gluten avoidance is clearly associated with improvement of many intestinal and extra-intestinal symptoms such as those listed above.
Many improve after discovering on their own that a gluten-free, wheat-free diet helps. Many also stumble onto this association after initiating a gluten-free diet or wheat-free diet on the advice of friends or family members; dieticians, nutritionists, alternative or complementary practitioners; or after reading an article on the Internet.
Why is there an irrational resistance to gluten-free diet that works?
Within the medical community, there seems to be an irrational resistance to a more widespread recommendation for gluten avoidance. Physicians who maintain that those who fail to meet strict criteria for diagnosis of CD should not be told they have to follow a gluten-free diet will often acknowledge that many of these patients respond favorably to a GFD. Some, however, continue to insist that a GFD trial is unnecessary, unduly burdensome, or not scientifically proven to benefit those who do not have CD. This position is taken despite the absence of evidence that a GFD is unhealthy or dangerous and much evidence supporting it as a healthy diet.
Gluten-free diet is safe, healthy and works!
Those of us who have observed dramatic improvements, both personally and professionally, find such resistance to recommending a GFD to a broader group of people difficult to understand. Considering the potential dangers and limited benefits of the medications that we, as doctors, prescribe to patients for various symptoms, it really seems absurd to reject dietary treatments. Yet, it does not seem to cross most doctor’s minds to suggest something as safe and healthy as a GFD, let alone to, at least, test for CD.
Gluten-free diet changes doctor’s life, health and medical practice
My personal journey into gluten related illness began when my physician wife was diagnosed with CD. I had mentioned to her numerous times over several years that I thought she should be tested for CD. After her second pregnancy she became progressively more ill experiencing, for the first time in her life, diarrhea, fatigue, and chronic neuropathy. An upper endoscopy revealed classic endoscopic findings. CD blood tests were elevated, and genetic testing confirmed she was DQ2 positive. This forever changed our lives and my practice. But the story does not end there.
Irritable bowel syndrome misdiagnosed by doctor
Having diagnosed myself with irritable bowel syndrome (IBS) and lactose intolerance in medical school, I had not considered gluten as a possible cause of my symptoms until my wife turned the table on me and said I should also be tested for CD. My blood tests were not elevated but I was confirmed to also be DQ2 positive.
Enterolab stool testing for gluten sensitivity helpful though not accepted or understood by some doctors
Having observed a good response to GFD in a few of my patients who had elevated stool gliadin antibody levels, I looked critically at the research behind this testing and spoke with Dr. Ken Fine before paying to have my entire family tested through Enterolab. Both my gliadin and tTG antibodies were elevated and I responded well to a GFD. I began recommending stool antibody and DQ genetics to patients who did not meet strict criteria for CD but appeared to have symptoms suggestive of gluten sensitivity. Contrary to some critics’ claims about the stool antibody tests, there are many people who do not have elevated levels. Almost everyone I have seen with elevated levels has noted improvement with GFD, including myself.
IBS and lactose intolerance improves with gluten free diet
Not only did my “IBS” symptoms resolve and lactose tolerance dramatically improve, but my eyes were further opened to the spectrum of gluten related illness or symptoms. I was already aggressively looking for CD in my patients but I began considering non-celiac gluten sensitivity (NCGS) or gluten related diseases (GRD) in all my patients. What I have found is that gluten is an extremely common but frequently missed cause of intestinal and non-intestinal symptoms. Dramatic improvements in symptoms and health can be observed in patients who try a gluten-free diet.
Eating gluten probably not safe if you are genetically at risk for Celiac disease
Since only a fraction of DQ2 or DQ8 positive individuals have or will eventually get CD, does that mean gluten is safe to eat if you have those gene patterns? Even if you do not get CD, does continuing to eat gluten put you at risk for other autoimmune diseases, especially ones linked to the high risk gene patterns? Why do some people with these patterns get CD but most do not? Do some who do not have CD experience symptoms from gluten that would improve with GFD? These questions need to be answered so that people can decide whether they want to risk that gluten is causing them to be ill, or is increasing their risk of CD or other autoimmune diseases.
A new paradigm for gluten sensitivity and Celiac disease
Added to my gluten-free diet, a daily diet of scientific articles on celiac and gluten related disease has revealed that there are many clues in the literature and research indicating the existence of non-celiac gluten sensitivity or a need to broaden our definition of CD. Dr. Hadjivassiliou has called for a new paradigm. He advocates that we start thinking of gluten sensitivity not as an intestinal disease but a spectrum of multiple organ, gluten related diseases. Mary Schluckebier, director of CSA, asks that physicians interested in this area work on forming and agreeing on new definitions for gluten related illness while pushing for more research and cooperation between medical researcher, food and agricultural scientists, dieticians, and food manufacturers.
The larger hidden epidemic of gluten sensitivity is real
Only those who look for NCGS and advise a GFD to those not meeting criteria for CD, are going to see the larger group of people who have a favorable response to a broader application of the gluten-free diet without further research. Those of us who are personally affected by gluten sensitivity or professionally involved in treating individuals with adverse reactions to gluten (or both) should support the research into the broader problem of gluten related illness. I believe that non-celiac gluten sensitivity is real and will be validated in further studies. I am presenting two years of my data at one of our national meetings in October 2007. If you have further questions or interest in this area visit my website and blog.
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The Food Doc, Dr. Scot Lewey, is an expert medical doctor specializing in digestive diseases and food related illness, especially food allergies, celiac disease and colitis. Dr. Lewey’s expert reputation as the Food Doc is established by a foundation of formal training in internal medicine, pediatrics, and gastroenterology (diseases of the digestive tract), his personal and family experience with gluten and milk sensitivity, and over two decades as a practicing physician, clinical researcher, author and speaker. Access this expert knowledge on-line today at www.thefooddoc.com
By Dr. Scot Lewey | Submitted On September 03, 2007
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