Dear Dr. Roach: I’ve been diagnosed with silent celiac disease at the late age of 62, but I probably had it for decades. (It may have led to my serious osteoporosis.) A biopsy revealed totally flattened villi.
I am gluten-free and will be getting celiac-antibody, nutrient, and other regular lab work from now on. But my doctors stated that no further scopes are needed unless my blood work reveals a problem, or I get symptoms while on a gluten-free diet. But for asymptomatic people like me, there are no symptoms, and blood work doesn’t show whether the small intestine has physically healed. I tried to ask my doctor this follow-up question but never received an answer.
Should I get a second opinion? I hear from other patients that their doctors did schedule a follow-up scope one to two years after their diagnosis to check their physical healing. For senior patients who can tolerate a scope and have had major villi destruction, is a follow-up scope prudent or unnecessary?
— W.C.S.
Answer: People with unexpected osteoporosis should be considered for celiac disease testing. Celiac disease is a condition of damage to the small intestine due to gliadin sensitivity. Gliadin is a protein found in gluten, wheat and other cereals, and it is thought to directly damage the lining of the intestine. This causes flattening of the villi, which is the absorptive surface of the small intestine. The only treatment for celiac disease is strict avoidance of gluten in the diet.
Inability to absorb nutrients can lead to symptoms such as diarrhea and weight loss, but symptoms can also be very subtle. Some people have mild abdominal discomfort after eating, but the symptoms usually disappear once they’re on a gluten-free diet.
People with celiac disease often have low calcium levels, the reasons for which are complex and involve parathyroid hormone and vitamin D, in addition to direct malabsorption of calcium. I had one colleague with undiagnosed celiac disease who woke up after yet another colonoscopy preparation, and she was unable to move her muscles due to low blood calcium levels. Since the major reservoir of calcium in the body is the bone, calcium is taken from the bone to preserve blood calcium levels, but this can lead to severe osteoporosis over the years.
Blood tests can be highly suggestive of a celiac disease diagnosis, but small bowel biopsies remain the definitive way to diagnose celiac disease. Blood tests can turn out negative if a person is on a gluten-free diet, so the blood tests must be done while a person is consuming gluten.
Your question about getting another biopsy after being on a gluten-free diet is debated. However, the consensus of opinion as published by the American Gastroenterological Association is that people like you with severe celiac disease should get another biopsy within 12 months to confirm the original diagnosis and establish that the diet has allowed the intestine to heal.
In your case, carefully monitoring your vitamin D, parathyroid hormone and calcium levels, as well as keeping up with your bone density, will be important ways of confirming successful treatment. Unfortunately, bone is slow to change, and it will take years to be sure that your osteoporosis is improving through bone density tests.
You can read a lot more about celiac disease at celiac.org.
Contact Dr. Roach at ToYourGoodHealth@med.cornell.edu.