Why are doctors often unable to recognize celiac disease and gluten sensitivity?

By Dr. Scot Lewey

Doctors are often unable to diagnose a very common condition like celiac disease (CD) or gluten sensitivity. The average time to establish this diagnosis in adults is 11 years and there are several reasons for this. CD was once thought to be rare and only affected young children. This is what doctors today learned in medical school and they are unaware that the spectrum of CD has changed.

Serological donor screening tests recently confirmed that celiac disease is present in 1 in 133 people in the United States. Most doctors are also unaware of this fact for various reasons.

CD is treated with a gluten-free diet, not with medication. Pharmaceutical companies contribute much to the medical education of doctors after graduation and also subsidize medical research in the United States to a large extent. Because it doesn’t benefit from drug company money and marketing, CD doesn’t appear in medical journals or get mentioned by drug reps to doctors. It is rarely the subject of major conferences or research projects. It is a marginal disease that is largely outside the “thinking” of the majority of doctors.

Physicians who currently remember CD have a vision of a very young, pale, skinny child with gaunt limbs and a large belly like the picture they saw many years ago in medical school. The medical history linked to this image is that of a child suffering from malnutrition, with growth disorders and numerous often malodorous diarrhoea. A study of primary care physicians confirmed that the majority of them are unaware that CD exists in adults. If they think it exists in adults, they surely don’t believe that someone who is overweight and has constipation or no bowel symptoms can have this disease.

They do not know that symptoms such as fatigue, bone and joint pain, headaches, certain skin rashes are common symptoms of CD, that autoimmune diseases are associated with it such as diseases of the thyroid gland, type 1 diabetes, rheumatoid arthritis and lupus. Complications, caused by malabsorption, such as anemia and osteoporosis are often not recognized as common manifestations of untreated CD. More than 250 symptoms involving nearly every part of the body are associated with CD. Unless you give specific clues to your doctor such as a family history of MC,

Many physicians are unfamiliar with serologic and genetic testing specific to CD. Others, while listening to you list your symptoms, don’t think about the possibility of CD and therefore will never think of ordering these blood tests. Somehow, you never get the chance to be diagnosed until you ask him to. Often even, your request will be refused until you insist, for example, because of your family history or because a member of your family or a friend advised you; often you even have to show your doctor your own research on the subject. Their preconceptions or misconception about CM can be hard to counter.

It should be noted that many doctors do not like to change the diagnosis they have given and therefore may not want to consider an alternative diagnosis when new symptoms appear. Instead they may try to fit the new symptoms to an existing condition or diagnosis. As people with untreated CD often suffer from neuropsychiatric symptoms your doctor will therefore be tempted to label you depressed, anxious, stressed, neurotic or perhaps just a little crazy who likes to complain. The consequence will be that he will stop listening to you or taking your words seriously, and you will be tempted to stop talking about your symptoms or anything else that concerns you.

Finally, I would like to mention that physicians are under tremendous pressure to reduce health care costs. Screening tests represent a huge budget item in health care expenses and these tests are prescribed by doctors. In the United States, several insurance companies closely monitor each doctor regarding the amount of tests they order. As a result, your doctor may feel pressure not to order “unnecessary tests”. For many physicians who believe CD is rare, serologic testing or endoscopy will not be ordered for these reasons; and if they are, serological tests will often be misinterpreted or give a false negative. An endoscopy may be performed but without a biopsy or the results of the biopsy will be misinterpreted. This will give you and your doctor the false assurance that CD and gluten sensitivity have been ruled out.

I recommend helping your doctor in the following ways if you believe you may have CD or gluten intolerance:

  1. By writing down all your symptoms and explaining how you believe gluten is the cause.
  2. By telling your family history, including your ancestors and showing the results of any genetic tests that have already been done.
  3. By becoming familiar with the different screening tests for CD and gluten sensitivity and their limitations.
  4. Politely asking your doctor for CD testing and indicating why you believe this disease may be the cause of your symptoms.
  5. By being prepared to undergo adequate and appropriate assessment.
  6. Being ready to ask for a second opinion if necessary .

Being well informed and well prepared will help your doctor.