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.
 ABOUT
THE AUTHOR
Dr. Scot Lewey is a physician who is specialty trained and board
certified in the field of gastroenterology (diseases of the
digestive system) who practices his specialty in Colorado. He is
the physician advisor to the local Celiac Sprue support group and
is a published author and researcher. He is developing a web based
educational program for people suffering from food intolerance and
Celiac disease
http://www.thefooddoc.com
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