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Sue's Story


In August 2009, I went to the emergency room. I thought I had the flu… I had been coughing, was feverish and very congested.  

For more than 2 years I was anemic, which I found out because I was a frequent blood donor, and no matter what I did, could not get my iron levels up enough to continue to donate.  I had a history of headaches, and stomach problems pretty much all my life, and had been told that I had my Grandmother's tummy: easily upset, often constipated or having diarrhea.  

Back to the hospital…I was admitted, and after tons of tests, scans, upper GI, X-rays, etc., the doctor came in and told me that I had congestive heart failure and pneumonia.  He was also pretty sure I had cancer, because my blood work was totally abnormal.

The third day in the hospital, I was scheduled to have a stent put in a vein on my heart, and this new doctor (a blood specialist) came in to let me know I had celiac, diagnosed from the upper GI, and that I had no iron in my blood.  After an iron transfusion, my numbers still remained extremely low.  They did a bone marrow biopsy, and discovered that I had little or no iron reserves. Since then, I get iron transfusions about every 3 months.  

Now that I am on the gluten-free diet, my energy is coming back up, and I’m also doing what I need to do to try to repair my heart. I went once for a re-check at the GI doctor’s office. When I asked him about celiac, he told me to talk to one of his 'aides,' as they might have info to give me.  I didn't ask, and I never went back.  

My blood doctor is pretty convinced that undiagnosed celiac had caused the damage to my heart.  Not absorbing the nutrients that my heart and muscles needed. Another clue that I was celiac is that I have had a rash on my left hand for the last 10-15 years. I would also get itchy rashes on my elbows.

Living with celiac is difficult at best.  There are many products that are gluten-free, but most taste awful or have the consistency of mush.  These days, I eat a lot of veggies, meat and fish.  I miss my cereals, and I have tried gluten-free oatmeal, but apparently am sensitive to that as well.

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