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Celiac Disease: Underemphasized and Underdiagnosed

Issue: June 2010

By: Anat Sapan, M.D.

How much do you know about celiac disease? I seem to recall the condition was covered very briefly in medical school, and I expect that was probably your experience as well.

Lately, there has been an increased emphasis on this small bowel disease, but it has not come from within the medical community, but from nutritionists and even the press. I believe that we as physicians are behind the times when it comes to acknowledging that celiac disease may be the source of many of our patients’ ailments, and thus their cure could be as simple as going on a gluten-free diet.

The Statistics

It is estimated that one in 130 Americans suffer from celiac disease, which equates to three million people across all races, ages and genders. An astounding 95% of celiacs are undiagnosed or misdiagnosed with other conditions; 10 years is the average time it takes for someone to be correctly diagnosed.

There is a hereditary factor involved with celiac disease, as 17% of those who have it also have an immediate family member who is a celiac. Due to increased awareness, it is expected that 500,000 new celiac diagnoses will occur during the next five years.

The Challenge

Many ailments can be attributed to celiac disease, since this autoimmune digestive condition damages the villi of the small intestine and causes intestinal malabsorption. Celiac disease should be considered as a diagnosis for patients who present with arthritis, lactose intolerance, dermatitis, irritable bowel, migraine headaches, obesity, osteoporosis and thyroid disorders.

Does this mean that everyone who has those symptoms is a celiac? Certainly not…but it is definitely something to consider if you reach a treatment roadblock. We have all been there; we prescribe a course of treatment and patients do not respond…then we try something else, and perhaps even a third or fourth option, and still we do not get the results we seek.

It very well may be that we are overlooking the root cause of the symptoms: patients are intolerant to gluten. All the medicine in the world will not alleviate their conditions as long as they continue to ingest what for them is a dangerous allergen. Left untreated, they will continue to suffer and run that risk of developing other conditions such as infertility; reduced bone density; neurological disorders; some cancers; iron, folic acid and vitamin D deficiencies; and other autoimmune diseases.

My Story

Over the years, I have faced a number of situations where I felt at a dead end with respect to finding a treatment plan to alleviate patient symptoms. At wit’s end, I have suggested diet changes…and lo and behold, that has many times been the solution.

After just one week on a gluten-free diet, many people feel amazing. I still get postcards from patients who thank me for giving them back their lives, many years after I recommended eliminating gluten from their diet as a way of facilitating their long-term health.

You would think that given those experiences, I would have immediately realized that I could benefit from a gluten-free diet, after suffering from fatigue that never seemed to go away. Unfortunately, it took some time for me to make the self-diagnosis, but on January 28, 2010, I stopped eating gluten. Since then, I’ve never felt better.

The Diagnosis

Despite its prevalence, it would not be cost-effective to screen everyone for celiac disease, nor would I espouse recommending a gluten-free diet to all patients who come in with random complaints. I decide whether testing is appropriate based on my level of suspicion that celiac disease is probable.

I often err on the side of caution by recommending a blood test before “labeling” someone with a condition that can negatively affect them throughout their life. I would much rather be able to prescribe a change in diet as opposed to a drug regime.

Two blood tests are available to test for gluten tolerance, and both are quite sensitive. IgA antiendomysial antibody immunofluorescence (EMA) has a sensitivity range of 85-98% and a specificity range of 97-100%; IgA antitissue transglutaminase (tTG) has a sensitivity range of 90-98% and a specificity range of 95-97%. For both these tests, it is crucial that patients be on a gluten-rich diet to get accurate results, so that means testing should occur before embarking on a gluten-free diet.

If the results are positive, I recommend sending patients to a GI specialist for a small bowel biopsy to confirm the diagnosis. For most patients, learning they have celiac disease actually comes as a relief.

The Treatment

There are no pharmaceutical cures for celiac disease; a 100% gluten-free diet is the only existing treatment today. The good news is that the gluten-free marketplace has expanded with better tasting and more affordable products, so those with celiac disease have many food options. It does take some diligence to stay away from products that contain gluten, but once most people see the positive effect that has on their health, they are highly motivated to make the effort.

Moving Forward

As physicians, I believe we must integrate with other professionals, such as nutritionists and holistic practitioners, to achieve the shared goal of providing the best care for patients. If a medical solution is called for, we can provide it, but when a “less invasive” resolution is called for—such as a diet change—we need to prepared to recommend that course. I strongly suggest adding celiac disease to your differential diagnoses, giving it the emphasis it warrants.

Dr. Anat Sapan, a board-certified OB/GYN, is affiliated with the Solano Regional Medical Group, Sutter Regional Medical Foundation and Sutter Solano Medical Center. She practices in Vallejo and Oakland.

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