Your Story

[k2626 0]

How were you diagnosed (blood test, biop), how long did it take to get a dx and what symptoms led you to seek help? Thanks so much

[masterjen 2]

I ended up in emergency twice with severe stomach pains (actually, lower abdominal, which probably caused confusion among the medical profession) in mid Jan. 2010. Prior to that I had had intermittent pressure in my stomach (not bloating) for almost 3 months, which became severe and more constant in mid-Dec. 2009. I was just getting my act together to see my doctor when I landed in emergency. No answers came from those two visits (they did CT, blood-work and ultrasound), and in between the last ER visit and when I followed up with my family doctor a week later, I did some research on my own, and several signs pointed to possible celiac. Talked to my doctor, who then sent me for the antibody blood test, which came back "high probable for celiac". I was then sent to a GI specialist for confirmatory biopsy, which came back "highly positive". I was diagnosed via the biopsy in the 2nd week of Feb..

[mushroom 1,209]

For those of us who went years undiagnosed, it is heartwarming to hear a story of from first symptoms to diagnosis in a mere seven months! Maybe things really are getting better!

[Jestgar 716]

My boss, who's an MD, suggested 'wheat' to me. I researched gluten and wheat, stopped eating it, and never looked back.

[jerseyangel 412]

"Nervous stomach", occasional fainting as a child. Teen years symptom free, in my late 20's after my second child was born, began having panic attacks, anemia, and nausea. Late 2003, had the flu and was never the same--developed chronic diarrhea, persistent anemia despite treatment, tingling/numbness/"burning", depression, anxiety, headaches, severe fatigue, and weight loss.

Family doctor was clueless--did blood and stool testing and said "possibly Chron's Disease". I read an article about Celiac Disease by chance and immediately asked for a referral to a gastroenterologist. He scheduled a biopsy (did not do the Celiac bloodwork). He could see damage with his eye, and sent me home that day with instructions to begin the gluten-free (and lactose free) diet. That was June 2005--I was 49.

[masterjen 2]

For those of us who went years undiagnosed, it is heartwarming to hear a story of from first symptoms to diagnosis in a mere seven months! Maybe things really are getting better!

I've read posts and have seen the bios of several of those on this board, and have noted how many have gone years before being diagnosed, and consequently have suffered from associated conditions. I feel very thankful I was diagnosed quickly. Doesn't matter much now, but I do wonder how long I, too, would have been undiagnosed if I hadn't done my research and hadn't specifically said to my doctor: 'My symptoms might be suggesting celiac. Can we check this out?'

[k2626 0]

I sure hope these stories help otheres in search of answers too