Wrong diagnosis?

Hi. I wonder if you could help me.

I had a endoscopy done about four years ago and because I had flattened villi, I was diagnosed with gluten intolerance. As a result I went on a gluten free diet for a few months but still didn’t feel well, although my digestion improved.

I had a barium x ray and found everything quite slow to move through my body. I also had another endoscopy which showed the villi back to normal again.

I am concerned as I have read that flattened villi can cause colon cancer, which my Mum died of. I have not been on a gluten free diet because the consultant didn’t think I needed to be. However at 43, my digestion is poor and my stomach is quite bloated.

I am very confused by the flattened villi matter and wonder if anything else can be the cause of the villi being damaged, such as a bout of food poisoning I had a few years ago. Please could you give me some advice.

Your question is very timely, as a recent article in the British journal Gut showed that patients who initially had an abnormal biopsy but continued to ingest gluten had the biopsy return to normal.

However, the clinical manifestations of the disease continued, bringing into question our so-called “gold standard” for diagnosing celiac disease: an abnormal biopsy that returns to normal after gluten restriction. The point is that one does not necessarily need to have abnormal villi to have symptoms of celiac disease.

There are other points to consider: did your doctor obtain at least 8 biopsies of your duodenum on the repeat study? The disease is very patchy and can be missed with one biopsy. Even on a single villus, there may be an uneven distribution of inflammatory cells. Was the initial biopsy well-oriented? Tangentially-cut sections of the biopsy can look like villus flattening, when there really wasn’t any.

If everything was done correctly, then you must have imaging studies of the rest of your small intestine, and a colonoscopy, because, given your family history, and current symptoms, you may be at increased risk for bowel cancer. Best wishes to you.

Health and happiness,
Dr. Aron, NOVEMBER 16 , 2007