PaulThe Voices of Celiac Disease

“I hope what I have endured happened so that others do not have to face those same challenges.”

Portrait of Paul

Describe your life prior to diagnosis:

It was one health issue after another. In 2017 I started having tachy-brady syndrome (a syndrome characterized by an abnormal heart rhythm) and had to get a pacemaker. In 2018 I had a stroke that left me paralyzed in a wheelchair for six months, which then led to me having hemorrhoids and needing a full hemorrhoidectomy. My gallbladder failed shortly after. I constantly had bleeding and ulcers in my gastrointestinal tract, and my doctors couldn’t figure out why. My blood pressure was always running high regardless of what medication they threw my way. When I got an MRI for my stroke they discovered nodules on my thyroid, which ended up being cancerous. So I had a total thyroidectomy, and they had to remove the node between my windpipe and esophagus. 

I have been off my thyroid-replacement medicine for a month now and will begin cancer treatment soon. Currently I am having to do a low iodine, gluten-free, dairy-free, soy-free diet and avoid red meat and pork due to my cholesterol being 185.

How did you come to know (or suspect) that you have celiac disease?

My son got his celiac disease diagnosis 8 years ago, but we were unaware that celiac disease is hereditary, and evidently so were the doctors in the area we’re from. I was diagnosed in April 2021 after moving to a new state and seeing a new doctor. 

We had noticed, though, in the months that we had our son and were gluten-free, my health would improve slightly. So we spoke to my doctor and asked her if that could be the cause of all my issues.

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 suspect 34 years. I had heart issues, anxiety, depression, daily vomiting, brain fog, mood swings, a stroke that left me wheelchair bound for six months, several surgeries, constant colitis flare-ups, and gastrointestinal bleeding.

Do you believe anything could have sped up your diagnosis?

Yes, if doctors would check for celiac disease earlier, when symptoms start to appear.

Describe your experience with living with celiac disease:

It’s a life that shouldn’t have been this rough. No one should have to endure these health issues before they get a diagnosis.

Is there anything else you’d like to add to your story?

I hope what I have endured happened so that others do not have to face those same challenges.