“My family made treatment difficult at first. They scoffed and didn’t care about what I could and couldn’t eat. My aunt claimed that it was a Jewish person disease and since there weren’t any Jewish people on their side then it couldn’t be from them.”
“It was very difficult to raise my son and work and maintain our home. After work, I had to go home to sleep for 1–3 hours before I could manage the nighttime tasks of child-rearing. Weekends were spent in bed resting and recovering.”
“For me, even a crumb can cause me to go to the ER, so invitations to go to a friend’s house, a restaurant, or a party to bring a lot of anxiety with them.”
“Providers in small, rural places are missing knowledge about how celiac disease can present without gastric symptoms.”
“We didn’t know what was wrong with our daughter. Our doctor initially did not think celiac disease because she was so young and because she didn’t have diarrhea.”
“Since being diagnosed Isaiah has grown almost 12 inches and gained over 30 pounds. Celiac disease was stunting his growth.”
“The heart doctors had access to my records, but never once did they bring up that anemia can cause chest pain. I spent over $30,000 out of pocket on multiple tests, one even said it was all in my head.”
“That’s the crazy part, I never had symptoms. At least not any of the ones everyone talks about.”
“I thought my son was dying. He was so weak he couldn’t climb the stairs. His joints were so swollen and he hurt. He slept all the time.”
“My celiac disease was triggered when I was pregnant. My iron levels got so low I had to go to the hospital for several hours at a time for IV iron infusions.”
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