BobThe Voices of Celiac Disease

“I just turned 80 years old and I think I have a very good life. I am so glad they found out I had celiac disease about 8 years ago.”

A photo of Robert smiling.

Describe your life prior to diagnosis.

For about 20 years I had gastroesophageal reflux disease (GERD) and severe gas pains. I had to consistently take PPI medications like Protonix and Dexilant. The PPIs helped but did not completely solve my problem. I probably had 12 upper endoscopies during those 20 years. About five years after the start of my symptoms they determined I had Barrett’s esophagus based on a biopsy. Because of Barrett’s I had a Nissen fundoplication procedure done to help relieve my GERD. This procedure helped but did not completely solve my GERD problem so I continue taking my PPI medication.

How did you find out that you had celiac disease? Did you suspect it beforehand?

Before I was diagnosed with celiac disease, I had never heard of it. I had seen five different GI doctors before the last doctor I saw did a blood test for celiac disease. This was the first test for celiac disease that was done in the 20 years I have been suffering from GI problems.

The bad news is the blood test, tTG-IgA, came back negative for celiac disease. Unlike other doctors, my doctor did yet another upper endoscopy. He was also knowledgeable enough to take enough biopsy samples in the right places to diagnose me with celiac disease. None of my previous GI doctors ever took enough biopsy samples.

If you were diagnosed, who made the diagnosis?

My new GI doctor, whom I had only been seeing for a short period of time. Because I was negative on my blood test I visited Dr. Fasano at the Celiac Center in Boston, and he looked at the biopsy slides and confirmed without a doubt I had celiac disease.

How long did it take for you to get diagnosed since your first symptoms and what (if any) challenges did you face along the way?

I believe it took about 20 years from my first symptoms until I was diagnosed with celiac disease. Before I was diagnosed, I had a lot of pain and discomfort and also two operations I don’t think I needed.

Do you believe anything could have sped up your diagnosis? If so, please explain:

I believe they could have found out I had celiac disease 20 years earlier if any of the previous GI doctors that did upper endoscopies had taken more biopsy samples and in the right location. Also, my rheumatologist, who was checking to see if I had lupus, could have recommended testing for celiac disease after the results of my ANA blood test were extremely high and I didn’t have lupus. After being on a gluten-free diet for eight years, I now have a very normal ANA level. Also, I had a Dexa scan five years before I was diagnosed with celiac disease, which showed I had very severe osteopenia. They never bothered to check to see if I had celiac disease.

Describe your experience living with celiac disease:

I just turned 80 years old and I think I have a very good life. I am so glad they found out I had celiac disease about 8 years ago. Celiac disease has caused me a lot of pain and discomfort for over 20 years.

About one year after I was diagnosed with celiac disease, I started a gluten-free support group with the help of a friend who also has celiac disease. The support group has helped me live with the disease and I think I have helped a lot of people with celiac disease. Dealing with the social issues has been and still is difficult. Living with celiac disease is not easy but now it has been about 8 years since I was diagnosed and I have learned how to deal with it.

On the positive side, having celiac disease gave me opportunities to meet some very wonderful people who have celiac disease and a lot of people without celiac disease who are supporting our celiac community.

Without all of my wife Posie’s support and sacrifices living with celiac disease would have been almost impossible. After being diagnosed and living on a gluten-free diet for a month my wife suggested and completely supported making our whole house completely gluten-free.  This is just one of the things she did that made an incredible difference in my life.

What would a cure mean for you?

It means I could live a normal life. I could go to any restaurant I wanted to go to and I could go to social events without having any concern about what I can eat.