A Gastroenterologist’s Personal Journey Down the Gluten Rabbit Hole

Gluten intolerance resulting in symptoms and illness similar to celiac disease (CD) without meeting diagnostic criteria for CD was a new concept when I first wrote this article in 2006. However, the condition known as non-celiac gluten sensitivity (NCGS) for many physicians, even gastroenterologists to swallow to an increasingly recognized, written about and studied one in mainstream gastroenterology. While celiac dissease affects 1% of the population worldwide it is accepted that NCGS affects as many as 10% the population albeit transiently. I would propose it may affect as high as 30% of the population though mildly and transiently.

Wheat gluten as a cause of illness

Gluten ingestion is an avoidable, treatable, and reversible cause of illness and/or varied digestive and non-digestive symptoms in many people www.stuartakermanmd.com. It is believed to be a contributing factor in the rising epidemic of autoimmune diseases. Many physicians 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 but I don’t believe they can legitimately be rejected based on scientific grounds or experience any longer.

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 thirty 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 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. It was subquently slowly 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 and should be screened. Such high risk individuals 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 99% 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 rarely reported.


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