I Think I May Have Celiac Disease
Testimonials of people talking about their lives and symptoms before diagnosis and treatment
KATHY: "It can cause a multitude of symptoms."
MELISSA:" It can make some people throw up."
DEAN: "Symptoms just like flu -- stomach flu."
CINDY: "Stomach aches for years and years and years including diarrhea, constipation and all that really fun stuff."
COBINA :"Pain, gas, unpleasant reactions to almost everything."
LARRY: "You become dehydrated and you become very sick."
DESIREE: "My bones were very, very weak and very painful. I couldn’t hold a pen."
BILL: "And I was losing weight tremendously."
KATHY: "And the anemia oh my God, the anemia!"
COBINA: "Of course you’ll get headaches, you’ll get pallor."
DEAN: "And I also had itching lesions on my head."
MELISSA: "I had horrible a rash. All the time just very itchy skin."
DESIREE: "I had problems with blood pressure. I would pass out sometimes if I stood up too quickly."
LARRY: "I have severe osteoporosis. And I have the thinnest bones you’ve ever seen."
DESIREE: "I lost an inch of my height from my spine just bending from lack of calcium. And my teeth are in pretty bad shape because the enamel on my teeth corroded or eroded because of lack of calcium."
COBINA: "Tooth enamel loss."
CINDY: "And infertility, which is something I know all too well."
KIMBERLY: "My earliest recollection."
COBINA: "We can start way-back in childhood."
BILL: "I was always sick."
KIMBERLY: "I threw up frequently. My stomach always hurt."
DEAN: "And it seemed like I was sick all the time."
ALLAN: "When I was a boy it seems like, you know many times that I would just have this -- this dull ache in my stomach a lot."
CINDY:" I had stomach aches that woke me up in the middle of the night and that took me out of my classroom and into the school nurses’ office quite frequently."
KATHY: "I don’t want to go to school mommy. I ate breakfast. I don’t feel good."
ALLAN: "I would eat and eat and eat and never put on any weight." .
BILL: "I had broken my arm one time and broke it again the same week and went back to the doctor and he says, “You appear to be a china doll.” I ended up breaking my arms over a two year period four times. I had broken my leg three times."
LARRY:" I was absolutely skin and bones my ribs were sticking out, I was tall, lengthy, skinny uh had no energy, uh I couldn’t function. Couldn’t think."
ALLAN: "would be told something and then -- you know -- just forget it immediately. "
KIMBERLY: "I always felt a little better when I first woke up in the morning. But right after I ate breakfast the stomach pain would return."
MELISSA: "My stomach used to always get really cramped and bloated after I ate and I always called it my “pregnant belly” ‘cause it just felt like it was sticking out so far."
DESIREE: "I was very, very self conscious about my body. Because my stomach was always bloated, I always thought that I looked pregnant. I’d start out in the morning maybe a size 6 and by the end of the day I’d need to wear pants that were a size 8 or 10 because my stomach had bloated so much. My ribs would stick out. My hip bones stuck out. But yet I had a protruding belly. And I can remember being 5 and 6 years old and having kids tease me about looking pregnant."
BILL: "Going to the bathroom was -- you know -- 4, 5, 6, 7, 8 times a day was normal to me."
MELISSA: "I used to have a problem where, like if I ate anything it went right through me. So I would skip breakfast and then go to high school. And then I would eventually be so famished that I would eat something and (pause) there was this period between two classes where there was like 15 minutes where, like no one used the bathroom and I would have to, like run for the bathroom after eating something and then I would go to the office and call my mom -- this happened at least a couple times a week -- I would call my mom and be: “You HAVE to come and get me.”
KIMBERLY: "I remember that pain vividly. It felt as though I had a raging fire in my stomach. I think anyone can relate to having the flu. I kind of was walking through a cloud -- a flu cloud, so to speak – all of the time. My stomach was always bothering me. I had a headache a lot."
COBINA: "Then I had an episode of rashing and almost passing out apparently from being cold."
KIMBERLY: "And then I would have these episodes where for one-to-three weeks I -- I mean I couldn’t get out of bed."
MELISSA: "When I was in college, when they gave me all those strange diagnoses, they had me taking Zelnorm to go the bathroom essentially and then um taking mineral oil in my juice in the morning so, like every morning I would have to, like have this little cup of juice, you know? Really isn’t that what you did in college?"
COBINA: "At my very worst ."
DESIREE: "Things that were mild annoyances were now -- you know just completely incapacitating me."
DESIREE: "My stomach aches were incredibly bad. I was unable to go more than 40 minutes without using a bathroom."
KATHY: "It was a horror story. A horror story."
COBINA: "I had gotten to the point where I couldn’t take a few steps without there being a – a – leakage. And it was very unpleasant."
KATHY: "My abdomen hurt all the time."
DEAN: "I knew I was sick. I knew there was something wrong with me."
KATHY: "It got so that I couldn’t make it up the basement stairs after throwing laundry into the washer. It was a nightmare."
DESIREE: "Then my tongue started to swell up and would crack and I didn’t know why. I uh -- you know if someone shut the lights off I was completely blind -- I couldn’t see anything."
KATHY: "My hair was falling out. I could barely see. I changed my glasses every six months and it still -- I still couldn’t see."
DESIREE: "My hair was falling out and that actually was the thing that sort of scared me the most. Because I remembered a friend we had who had anorexia and her hair started to fall out and I couldn't’t figure out why mine would be falling out."