My journey to a celiac disease diagnosis

For me, celiac disease was a diagnosis that came only after my own persistence with my doctor upon learning that my father – who had similar symptoms – was diagnosed with the autoimmune disease.

Celiac typically causes digestive issues when the body overreacts to food containing gluten, a protein found in wheat, rye and barley (and hidden in many processed foods).

When I was in college, the occasional stomachache I experienced as a child turned into a much more regular thing. My digestive tract was in an uproar much of the time, but then I would have a week or two of feeling relatively normal. I thought maybe certain foods were bothering me, but I couldn’t really pinpoint an exact offending food. I knew one thing for sure, beer was not my friend. My doctor told me I had irritable bowel syndrome.

Many people carry the genes for celiac disease, but those genes often aren’t kicked into action until something else changes in your body – such as an illness (for me, I believe it was an awful case of mononucleosis), stress, surgery or pregnancy. Many people have no idea exactly when their symptoms started.

After my father was diagnosed with celiac, I insisted my own doctor test me as well, as celiac is a highly genetic autoimmune disease. When my blood screening came back with a positive result for celiac, I had an endoscopy done to confirm the disease. My villi – the little hair-like strands in your intestines that “grab” the nutrients from your food – were damaged, so celiac was confirmed by a gastroenterologist.

Until recently, celiac disease was thought to be a very uncommon ailment. Now, doctors know that 1 in every 133 Americans has celiac, which is about one percent of the population, with many of those people believed to be undiagnosed or misdiagnosed with other ailments.

While digestive tract issues ““ like cramping, bloating, nausea, diarrhea, constipation ““ are the most common symptoms, many people experience other symptoms entirely, such as a foggy mental state, unexplained infertility, weight loss, anemia or a skin rash. More than half of adults with celiac disease have signs and symptoms unrelated to the digestive system, according to the Mayo Clinic. That just makes getting an accurate diagnosis even more complicated.

There is no cure for celiac disease, but with careful elimination of all gluten from the diet, most people’s intestines will heal. I am vigilant about what I consume and I am careful about cross contamination in my own kitchen. While we do have gluten in my house for my husband and one of my kids, everyone knows that when you want jelly for your toast, you scoop once with a spoon so there is no chance of any crumbs of gluten going from the knife you spread onto your bread and back into the jelly jar.

It was a big change to my life to follow a gluten-free diet, but I am grateful I was diagnosed 13 years ago, when I was in my mid-20s, and after “only” suffering for about five years. Most people suffer with symptoms for an average of 6-10 years before getting a correct diagnosis.

Undiagnosed celiac – or ignoring the required gluten-free diet – can lead to bigger problems including loss of bone density, neurological problems, infertility and miscarriage, and cancer (my father developed small bowel cancer from the many years he suffered celiac symptoms before diagnosis).

Consult your doctor if you have diarrhea or digestive discomfort for more than two weeks. For children, consult their doctor if the child is pale, irritable, failure to grow or has a pot-belly and foul-smelling stools, according to the Mayo Clinic. If you have a family member with celiac (or another risk factor such as type 1 diabetes), you should be tested for the disease. It is important to continue eating gluten when testing takes place, otherwise results could be inaccurate.

 

celiac disease