Better Health: Smart Health Commentary Better Health (TM): smart health commentary

Article Comments

Strange Symptoms Without A Diagnosis? It Might Be Celiac Disease


Watch CBS News Videos Online

There’s a disease that American doctors are absolutely terrible at diagnosing. It’s estimated that three million Americans have celiac disease and only a small percentage of them know it. In celiac disease, a component of wheat, rye, and barley called gluten sets off an immune reaction that attacks the intestine and can affect the entire body.

Patients are unable to properly absorb essential nutrients because the absorptive fingers (villi) in the small intestine have been damaged or destroyed. Doctors usually miss the diagnosis because they don’t realize how variable the disease can be. Here is a list of associated symptoms and problems:

Diarrhea, abdominal pain, bloating, gas, distention, weight loss, constipation, irritable bowel syndrome, failure to thrive in infancy, vomiting, short stature, iron deficiency with or without anemia, poor performance in school, delayed puberty, infertility, recurrent miscarriage, osteoporosis, vitamin deficiencies, fatigue, tooth discoloration and dental enamel defects, skin disorders, elevated liver enzymes, Down syndrome, Sjogren’s syndrome, aphthous ulcers (canker sores), arthritis, depression, nerve and  balance problems (peripheral neuropathy and cerebellar ataxia), irritability in children, seizures, and migraines. Patients with other autoimmune diseases such as type 1 diabetes and thyroiditis are at increased risk for celiac disease.

Click here for the National Institute of Health’s information on celiac disease.

There appears to be a slight increase in the risk of lymphomas and gastrointestinal cancers that, in one study, returned to normal after five years of a gluten-free diet.

The diagnosis is usually missed because doctors don’t think of it.  I was taught in medical school thirty years ago that patients always have dramatic symptoms such as diarrhea and weight loss. Wrong. We now know that about half of patients have atypical symptoms that are included in the long laundry list above. Although doctors are becoming more aware of the illness, it takes an average of more than four years for the correct diagnosis to be made in the small percentage of patients in whom the diagnosis is not missed altogether.

New England Journal of Medicine on Celiac Disease.

There are simple blood tests that can detect celiac disease over 90 percent of the time and that only rarely give false positives. The diagnosis is then confirmed by an upper endoscopy. With the patient sedated, a small, flexible tube is slipped into the mouth, down the esophagus and stomach and into the first part of the small intestine (duodenum), where biopsies are taken and subsequently examined for changes seen in celiac disease.

Treatment is a gluten-free diet – easier said than done, especially for a child who wants to be like everybody else and eat pizza, cookies, and cake at birthday parties. Patients have to be extremely vigilant because gluten is in many unexpected foods, such as soy sauce, candy, and malt flavoring.

Consultation with an experienced dietitian is crucial because some older materials distributed by doctors, dietitians, and nutritionists are out of date and cause patients to avoid certain foods unnecessarily. There are many Web sites that provide excellent information about diet (see below). There’s research into developing a pill that would help people with celiac disease, but it’s not ready for prime time yet.

The key to improving our dismal rate of picking up celiac disease is to increase awareness both in physicians and patients. One study found that general practitioners actively looking for the disease increased their rate of diagnosis by 43 fold.

Anybody with any of the long list of symptoms or problems listed above should consult a doctor and discuss whether testing for celiac disease is appropriate.

There are many ways that celiac disease can disguise itself. Here are four to especially look out for:

A child with behavior or learning problems

Celiac disease can cause cognitive difficulty that has been called “brain fog.” The causes are unclear but may include nutritional problems, inflammation, or immunologic damage in the brain. It’s well known that children with iron deficiency – with or without anemia – do worse in school.  Researchers suspect celiac disease may be linked to developmental delay and ADHD.

Irritable bowel syndrome

There is an increased risk of celiac disease in the 10-15 percent of adults who carry the diagnosis of “irritable bowel syndrome” (IBS). Many of the symptoms of IBS such as diarrhea, constipation, bloating, and abdominal pain also occur in celiac disease.

Iron deficiency

A simple blood test will detect low iron, a relatively common condition that is usually not from celiac disease. However, low iron may be the only clue to celiac disease, so it’s important to maintain a high index of suspicion. Remember that some patients can have both a relatively innocent cause of iron deficiency (such as poor dietary intake or menstrual blood loss) AND malabsorption of iron due to celiac disease.

Osteoporosis

Untreated celiac disease – with its associated low vitamin D and decreased calcium absorption – increases the risk of osteoporosis. Although there is disagreement among experts, some researchers have advocated that all patients with osteoporosis be tested for celiac disease.

Others say to reserve routine testing for men and pre-menopausal women with osteoporosis because osteoporosis is less frequent in these groups compared to postmenopausal women and therefore it’s important to look for unusual causes such as celiac disease. In any case, all patients with osteoporosis should be considered for celiac testing on an individual basis.

It is unacceptable that millions of people are suffering from a disease that can usually be easily treated with diet. Patient and physician education is crucial. If you send this blog to one hundred of your friends, the odds are that one of them will have celiac disease and not know it. You could change somebody’s life.

For this week’s CBS Doc Dot Com, I discuss celiac disease with a world expert, Dr. Peter Green, Professor of Clinical Medicine and Director of the Celiac Disease Center at Columbia University Medical Center.

For online celiac disease resources:

The Celiac Disease Center at Columbia University

National Library of Medicine

Celiac Disease Foundation

Celiac Sprue Association

For more information on gluten-free diets for celiac disease:

www.celiac.com

Celiac Chicks

Glutenfree.com

Kinnikinnick Foods

Foods By George

About.com: Celiac Disease


You may also like these posts

Read comments »


Comments are closed.

Return to article »

Latest Interviews

IDEA Labs: Medical Students Take The Lead In Healthcare Innovation

It’s no secret that doctors are disappointed with the way that the U.S. healthcare system is evolving. Most feel helpless about improving their work conditions or solving technical problems in patient care. Fortunately one young medical student was undeterred by the mountain of disappointment carried by his senior clinician mentors…

Read more »

How To Be A Successful Patient: Young Doctors Offer Some Advice

I am proud to be a part of the American Resident Project an initiative that promotes the writing of medical students residents and new physicians as they explore ideas for transforming American health care delivery. I recently had the opportunity to interview three of the writing fellows about how to…

Read more »

See all interviews »

Latest Cartoon

See all cartoons »

Latest Book Reviews

Book Review: Is Empathy Learned By Faking It Till It’s Real?

I m often asked to do book reviews on my blog and I rarely agree to them. This is because it takes me a long time to read a book and then if I don t enjoy it I figure the author would rather me remain silent than publish my…

Read more »

The Spirit Of The Place: Samuel Shem’s New Book May Depress You

When I was in medical school I read Samuel Shem s House Of God as a right of passage. At the time I found it to be a cynical yet eerily accurate portrayal of the underbelly of academic medicine. I gained comfort from its gallows humor and it made me…

Read more »

Eat To Save Your Life: Another Half-True Diet Book

I am hesitant to review diet books because they are so often a tangled mess of fact and fiction. Teasing out their truth from falsehood is about as exhausting as delousing a long-haired elementary school student. However after being approached by the authors’ PR agency with the promise of a…

Read more »

See all book reviews »