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Marilyn's Story


My story started out with chronic anemia.  I had undergone a hysterectomy in 1990. In about 1996, I was turned down as a blood donor because I was anemic!  I was told to see my doctor, and blood tests revealed very low blood counts. "Take iron supplements. Come back if you don't feel better," the doctor said.

Every year when I had my annual physical and blood tests, my levels remained low.  I was always told to take more iron. Finally, in about 2000, I was sent for a colonoscopy.  Everything looked fine, no bleeding to cause anemia (I already knew that)!  By that time, I had begun suffering from regular bouts of gas and diarrhea, some extreme joint pain, occasional bloating and lots of discomfort.

I changed doctors several times and finally found a gynecologist who was so horrified by my story of extreme fatigue and years of iron supplement use with no improvement that she sent me to a hematologist. He ordered another scope (upper & lower) in 2010. Lo and behold, the pathologist said "It appears to be a gluten intolerance."

Meanwhile, I have had two rounds of iron infusions in the last year, and my iron levels are in the normal range for the first time in more than 15 years.

The hematologist told me that many people who have celiac disease are anemic!

I have been working on the gluten-free lifestyle, which is hard for someone who loves bread and pastries like I do, but I know now, if I do indulge those cravings, I pay for it with 2 days of misery. Sometimes more!

I'm so thankful for all the info from NFCA that has made this life change a lot easier. I wouldn't have known where to start without this website!

I have a hard time understanding why healthcare professionals know so little about this disease.

I just hope that if you or a loved one is suffering like I did to keep asking questions until someone finally takes you seriously!

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