Amy's Story by Julie from Jens gluten free blog

When my daughter Amy was six months old she started falling off the weights charts. Her weight continued to plummet and at the age the two she weighed about 17 ½ pounds. At that point my pediatrician told me that it was time to send her for some blood tests. He tested her for a range of things including anemia and celiac disease. Happily she tested negative for both but the pediatrician was still a bit concerned and he sent us to a gastroenterologist. The gastroenterologist told us that while it is unlikely that Amy has celiac disease because her blood tests were negative, it is still possible. He wanted to do a biopsy on her.

The morning of the biopsy was a tense one for me. I didn’t like the idea of my two year old undergoing anesthesia and I had little sleep the night before. Amy woke up with her usual innocent, unknowing smile, we dressed her and drove to the hospital.

When they showed us into the surgical room, I was a bit overwhelmed. It was a chilly, sterile room with extensive medical machinery and a large group of medical personal. Amy looked terrified. She clutched me tightly as I tried to get her to lie down. At that point the nurses took over. They pulled a crying Amy off of me, shoved a mask over her face and shooed us out. The anesthesia would only last a short time and they had to begin.

When it was over my husband and I were ushered into the recuperation room. We found Amy fast asleep. Her hospital bed seemed to swallow up her tiny undernourished body making her look even skinnier than she was. She woke up minutes later and remembered nothing of her morning trauma. I, on the other hand, couldn’t get it out of my head.

Two weeks later we got the results: inconclusive.

The diagnostic tests for celiac disease generally involve a blood test and a biopsy. The blood test consists of tests for endomysial antibodies (EMA), and tissue transglutaminase antibody(tTG). It is generally thought that when these two are positive, celiac disease is very likely and a biopsy is indicated. But recent studies have shown that tTG may only be positive in 40% of celiacs when there is only mild degrees of damage to the intestine. And in 20% of the cases the blood tests can be negative and the biopsy can be positive. That means at least 20% of the people who actually are celiacs may never even make it to the biopsy table because their doctors have ruled out celiac disease based on the blood tests.

And the news regarding the biopsies is not much better. People with mild symptoms (particularly family members of celiacs, who exhibit few or no symptoms) do not have sufficient damage to the intestine to be detected by a normal microscope. That means people with mild celiac disease cannot be diagnosed properly via a biopsy.

The failure of these diagnostic tests are creating a whole sub-group of gluten sufferers who call themselves gluten sensitive. These are generally people who tested negative for celiac disease but have put themselves on a celiac diet and find that the diet has helped them tremendously. They are very likely people with celiac disease who have not been properly diagnosed. The medical community needs to deal with the failure of the diagnostic tests for celiac disease.

My daughter was put on a gluten-free diet for a year. After six months her weight started to rise. She has since been gaining weight nicely and has adapted well to her new diet. This is all despite the fact that her blood tests were negative and her biopsy was inconclusive. Many of us have similar stories. Perhaps some of you would like to share your nightmares about the failure of the celiac diagnostic test.

Julie - Co-Author at JensGlutenFreeBlog
www.jensglutenfreeblog.com