When Celiac Disease is a family affair.

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I was diagnosed with Celiac Disease (CD) in the spring of 2006 by Dr. John Kao at the University of Michigan GI clinic, but I had my first symptoms of digestive system problems in 1990.

In the time between my first symptoms and my diagnosis, I was diagnosed with IBS, ulcers, hiatal hernia, acid reflux, h-pylori and other disorders. My primary medical doctor was treating me based on my symptoms, but I could not get better.

In the five years prior to being diagnosed with CD I was not a healthy person. I was taking many types of antacids and put through numerous tests including a colonoscopy, an EGD, and various blood tests. I was even put through a stress test and sleep monitoring to rule out heart problems. I was on Nexium at one point and then they doubled my script. Instead of helping, it made me worse. I was in a fog, I couldn’t function properly, and I had trouble sleeping.

It was Dr. Kao who determined these factors were all related to CD, and confirmed this by performing a scope and taking a biopsy of my small intestine. It was also discovered that all three of my children have CD as well.

In the first years following the confirmation that I had CD, I felt much better but I was still having problems. I learned from the physician’s assistant (PA) in Dr. Kao’s office, Christine Marie Brozo, that I also had a bacteria overgrowth in my intestines, and would need to follow a low FODMAP diet to avoid bad sugars, dairy and other foods.

Managing CD in the years since my diagnosis has been tricky due to the amount of misinterpreted information that is available. My family and I have learned to rely on quality sources such as the Celiac Disease Foundation. We’ve also had to reconfigure our home, replacing pots and pans and many items that we cooked with because they contained gluten from past meals.

The number one challenge has been the ability to eat out. So many restaurants today offer a gluten free meal in their ads or menu, but this is not always the case. We always have to ask: do they understand cross contamination issues? Do they truly understand a gluten free process? Over the years we’ve found a few local places that we can trust, and we’ve interviewed several chefs and cooks on the subject.

I would recommend Dr. Kao to anyone for this issue. He has been fantastic, sympathetic and passionate about me and my family and our diets. If it were not for Dr. Kao, I would still be on a wild goose chase of medications and tests.

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