Saturday, September 8, 2007

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.

9 comments:

sunshine said...

Your story is an inspiration. I've heard that it takes, on average, over 7 years for someone with Celiac Sprue to be correctly diagnosed. Your journey has been a challenging one but thank God you have a happy, healthy child. Thanks for sharing!

mrs.naramor said...

Thanks for telling your story. I am so glad you and your little boy are okay. It is amazing how much better you feel when you finally figure out what is wrong with you. It took me ten years, but I had no where near the heartache you did.

bradyb6 said...

Your story and webpage are awesome! I thank you for sharing your story. I am glad you were properly diagnosed. You deserve to live a long, happy and healthy life with your loving husband and beautiful, loving son.
-bradyb6

Sheri said...

Beautiful and inspirational. Doctors can be dorks, can't they?

Lenora Jane said...
This comment has been removed by the author.
Lenora Jane said...

Hi Lori-

My name is Lenora Jane Estes, and I too have celiac disease. I'm also a journalism grad student at Northwestern and want to write a story about the prevalence of celiac disease and how restaurants, grocery stores, etc. in Chicago are taking notice. I would love to talk to you more about your story and how you're dealing with your diagnosis.

You can email me at ljestes@gmail.com or call me at 229-891-4317. I would love to write the story this week to coincide with the end of Celiac Disease Awareness month.

Please feel free to call me at any time.

Thank you!

Lenora Jane

kimrim said...

I was diagnosed with Celiac Disease June 2007. I too went through infertility and finally had a son July 2004 through IVF. My Dr. does not believe that Celiac has any relation to my inability to conceive. Please tell me how you believe they are related. thanks a bunch!

Lisa said...

Every May is Celiac Disease Awareness Month. Organizations, such as yourself have been the catalyst for such high awareness, but as you know this can not be the only time we think of this disease. Disease.com is dedicated to spreading the awareness for the Celiac Disease, causes, preventions, symptoms, and of course treatments. Through our disease profiles we have been able to work with several elite non-profit organizations. Now we want to work with you. If you could, please list us as a resource or host our social book mark button, it would be much appreciated. Let's create a medical breakthrough, through established awareness.If you want more information on that please email me back with the subject line as your URL.

Frances said...

Aside from treating Celiac Sprue, Naperville is also know for providing quality Naperville Chiropractic services for their patients.