Doctors frequently fail to diagnose a very common condition known as Celiac disease or gluten sensitivity. The average delay in diagnosis is 11 years in adults. There are several reasons for this delay. Celiac disease was once considered to be rare and affect only young children. This is what most doctors practicing today were taught in medical school and they are unaware of how the spectrum of Celiac disease has changed.
Screening blood donors only recently confirmed Celiac disease occurs in 1 in 133 people in the U.S. Most physicians are unaware of this for several reasons:
Celiac disease is treated by a gluten-free diet not a drug. Drug companies subsidize much of the continuing medical education received by doctors and most of the medical research in the United States. Without drug company money and marketing, Celiac disease does not appear in medical journal ads or get mentioned by drug reps detailing doctors. It is rarely a topic of major conferences or research grant proposals. It is a disease that is largely “out of site, out of mind” for most doctors.
Doctors who actually remember Celiac disease envision in their mind a very young, pale, emaciated child with skinny limbs and a big “potbelly” like the picture they were shown years ago in medical school. The medical history linked with this image is a malnourished child that is not growing and has numerous, bulky, and foul smelling diarrheal stools. Surveys of primary care providers have confirmed that most are unaware that Celiac occurs in adults. If they do think it could occur in adults they do not believe it can occur in someone who is overweight and constipated or has no intestinal symptoms.
They lack awareness that symptoms such as fatigue, bone and joint pain, headaches, and skin rashes are common in Celiac. Most are also unaware that it is associated with other autoimmune conditions like thyroid disease, diabetes, rheumatoid arthritis and lupus. Malabsorption complications such as anemia and osteoporosis are often not recognized as common presentations of untreated Celiac disease. Over 250 symptoms involving nearly every part of the body have been reported in Celiac disease. Unless you provide your doctor distinct clues such as a family history of Celiac or mention the possibility that you think you might be gluten sensitive they do not even consider the possibility of it to be the cause of your being ill.
Many doctors are unfamiliar with the specific blood tests or genetic tests for Celiac disease. Others are not thinking about the possibility of Celiac while listening to your symptoms so they never consider ordering the blood tests. Either way you never have a chance of being diagnosed unless you ask them to test you. Even then your request may be ignored unless you insist because of your family history, advice of family members or friends, or you present to them your own research. Their preconceived biases or misconceptions about Celiac may be difficult to break. If you have little to no symptoms you still may need to be tested because of risk factors but your doctor may be unfamiliar with the indications for screening of high risk individuals.
It should be noted that many doctors do not like to change a diagnosis they have made and therefore may fail to consider an alternate diagnosis when new symptoms present. Instead they may attempt to fit the new symptoms into an existing condition or diagnosis. Because people with untreated Celiac disease frequently have neuropsychiatric symptoms your doctor may label you depressed, anxious, stressed, neurotic or just plain crazy. As a result they may stop listening or taking your concerns seriously and you may be tempted to stop mentioning your symptoms or concerns.
Lastly, doctors are under tremendous pressure to keep medical costs down. Diagnostic tests are one the biggest expenses in medical care and are ordered by doctors. Many insurance companies track individual doctors according to the number of tests they order. Therefore, your doctors may feel pressured to avoid ordering any perceived “unnecessary tests”. For some doctors who still believe Celiac disease is rare, blood tests or endoscopies required for diagnosis may not be ordered for these reasons. If ordered, however, blood tests may be misinterpreted or falsely negative. Endoscopy may be done but no biopsy performed or poorly interpreted. You and doctor may be under the false assurance that Celiac disease and gluten sensitivity have been excluded.
I recommend you help your doctor if you believe you may have Celiac disease or gluten sensitivity by
1) Writing down all your symptoms and your understanding of how they may be due to gluten sensitivity
2) Sharing your family history, including your ancestry and any genetic tests done
3) Being familiar with the diagnostic tests for Celiac disease and gluten sensitivity and their limitations
4) Politely ask your doctor to test you for Celiac disease pointing out why you believe it may be a cause of your symptoms
5) Being willing to undergo adequate and appropriate evaluation and
6) Being prepared to obtain a second opinion if necessary. Being educated and prepared will help your doctor help you.