When I first was told my daughter had celiac disease nearly ten years ago, I would have answered this question simply by saying nausea and digestive issues.
But now I’ve come to realize there are so many different ways gluten can affect the body, and many have nothing to do with digestive or intestinal issues.
Celiac Disease – Not Always the Typical Symptoms
A few years ago, a program aired on television called Mystery Diagnosis. One particular episode was about celiac disease, and it completely changed the way I looked at gluten and celiac disease.
The program focused on the case of Eamon Murphy. In 1996, when Eamon was three months old, his mother noticed his eyes didn’t track and that he sometimes wouldn’t react to sounds. At one, he had difficulty chewing solid foods. By two, he had missed development milestones such as walking and talking. By the time he was three, and starting nursery school he was noticeably behind developmentally. Then he began to have transe-like episodes where his eyes would glaze over and he’d rock back and forth and talk to himself.
The doctors thought he had seizure disorders and wanted to medicate him. But fortunately, his mother Lisa listened to her instincts and began researching. Lisa had already been diagnosed with celiac disease and followed a gluten-free diet, but when she asked her doctor about the possibility of her children having celiac she was told, “They’ll have the exact same GI symptoms as you and you’ll know it.”
But not all cases are of gluten intolerance and celiac are digestive and intestinal as was once thought to be true. Also in the 1990’s, they were just beginning to uncover the genetic connection between celiac disease and that it often affected family members. It’s currently estimated that between 4 -12 percent of an affected person’s first-degree relatives will also have the disease. (In my family; me, my daughter and husband have it, my brother, his wife – and all her sisters and their children – as well as my brother’s three children and my sister’s two sons.)
Luckily at a Celiac Support meeting, Lisa met with Dr. Peter Green, director of the Celiac Disease Center at Columbia University and internationally renowned expert on the disease (and my absolute favorite expert on the subject of all things celiac and author of Celiac Disease: A Hidden Epidemic) and he strongly recommended Eamon be tested for celiac. He tested positive for the disease.
Following a Gluten-Free Diet
Gluten destroys the villi and the result can be malnutrition and this can be the root of many issues. For Eamon not absorbing the vitamins from the food he ate, robbed his brain of important nutrients and caused cognitive delays and seizures.
Changing Eamon over to a gluten-free diet was life changing. The seizures stopped. Eamon came to life. He was more alert and quickly caught up developmentally and did well in school.
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