My Story

My name is Lori and I have celiac sprue or celiac disease. I received the official diagnosis on January 5, 2007. Thank you Dr. Ali!

My journey began in 2001 when I was having a difficult time becoming pregnant. I thought it was because it was related to my age (I’m an older gal), but now I know differently. Infertility and miscarriages are related to untreated celiac disease. I was told that I would miscarry at week 5. And by week 8 things did not look good. But by week 11, everything seemed to be okay….At 36 weeks, I delivered my first and only child, a healthy baby boy.

I almost died after his birth. I started to hemorrhage. My placenta would not detach from my uterus and I lost over 40% of my blood. In order to save my life, the doctors needed to give me a life saving hysterectomy and blood transfusion. I was later told I had placenta accreta-( the doctors didn’t know this before I delivered). In retrospect, I believe this incidence was related to having undiagnosed/untreated celiac disease.

It took almost 4 1/2 years to get my celiac diagnosis. I was told by doctors I was depressed and they all wanted to give me antidepressants to feel better. I knew it was much more than that, so after going to two endocrinologists, a chiropractor, and long conversations with my OB/GYN, nobody seemed to know what was wrong with me.

Thank goodness for a weekend of overindulgences of gluten packed food - pizza and beer! I ended up in the emergency room with deliberating pain on my lower left side. I was given a CAT scan and some pain medication and was told to go home and make an appointment with a gastrointestinal doctor. That is how I met Dr. Ali (Edward Hospital in Naperville). He is probably the most caring and compassionate doctor I have ever met. As soon as I sat down in his office and told him my symptoms, he said that he was going to test me for celiac sprue. I said, “Celiac Who? What the hell is that?” Thank God he listened to me and correctly tested me for this disease.

After my blood work confirmed the antibodies, I had a biopsy done (gold standard for celiac diagnosis.) The first biopsy was negative. My small intestine were fine. So, I just went on the assumption that I was gluten intolerant. Well, what do you know! Two years later I was diagnosed as having full-blown celiac disease! The villi in my small intestines were completely destroyed!

Since January 5, 2007, I have concentrated on learning as much as I can about this disease. I have visited many websites, read books like Dr. Green’s -Celiac Disease-The Hidden Epidemic (a must for your library!) and consulted with a misinformed dietician. I actually shared information with the dietician to add to her celiac file!

My background in education will help me help you become educated and informed about celiac disease and living a gluten-free life.