I am a 45 y.o. woman. I was adopted as an infant. When I was 21 I had surgery for a perforated colon. After the operation and removal of about 25% of my small and large intestines, I was told by the doctors that they didn't know what caused the perforation and that it was a good thing that I got in there when I did because I was close to going septic.
Subsequent to the surgery I had years of bowel trouble which got worse and worse, mostly frequent diarrhea and abdominal pain. At 29 I got a diagnosis of lactose intolerance. Removing dairy from my diet helped a bit, but symptoms persisted with a varying degree of intensity.
At 39, I went to my doctor and asked for a colonoscopy. He was stunned, but he wrote the order. They did an endoscopy as well, but no biopsy. The gastroenterologist told me that I had early stage colitis and gave me two prescriptions. I refused them and did Elson Haas' two-week long general detoxification diet. When I reintroduced anything with gluten, I had the same symptoms. Blood work confirmed that gluten was a problem. I did not have a repeat endoscopy to get the gold standard diagnosis of celiac disease. I had enough evidence to convince me to eliminate gluten from my diet forever!
Fast forward to last year and my 10 year old daughter was diagnosed with celiac disease by a gastroenterologist at Children's Hospital in Boston after a positive endoscopy result. Her doctor recommended that I go back on gluten so that I could get the gold standard diagnosis. I said, No thanks!!!
Fast forward to May of this year when I found out that I had 4 birth siblings. I've met the three that grew up together. Three years ago the second oldest sister had surgery on her colon. She told me that it sounded a lot like mine, only they waited too long to go in and she did go septic. In fact she flat-lined. Thank God they saved her... however, there were many complications because of the delay in her operation.
She has never really recovered. About two weeks ago she went into the hospital and was diagnosed with profound anemia. She was weak and having some heart symptoms. All heart tests came up negative. She was given three bags of blood. She was sent home although she was still having heart symptoms.
She ended up back in the hospital where she continues to have heart symptoms and she has had blood in her stool.
I truly believe that we found each other now for a reason and that she might well have celiac disease. I've read that anemia is a complication with celiac disease that has progressed, and I wonder if the heart symptoms (irregular heart beat and pain after even the slightest exertion) are related to that.
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