I've encountered some of you on the pre-diagnosis board, but I think it's time to tentatively start reading in some other areas. Based on my biopsy (lymphocytes in s.i. and damage to villi - not severe) and gene tests indicating I'm homozygous DQ2, my doctor is confident that I have celiac, despite a negative blood test.
All of this started after a bout of gastroenteritis, which I gather from my reading can turn someone symptomatic. Prior to my stomach virus, I'd noticed a couple of gut twinges in the previous two months, but other than that I was very healthy: Running 5ks, iron levels sufficient to be a regular blood donor, etc. My digestion had always been sensitive, but not in more than an occasionally inconvenient way. But after the virus passed off, I began to develop increasing abdominal pain. First I was misdiagnosed with diverticulitis, then IBS. Meanwhile, I began to develop anxiety and have panic attacks. When I didn't get better they did a colonoscopy/endoscopy and found the inflammation.
It... honestly feels like a rather circumstantial diagnosis on which to base a lifelong diet change. But I guess there are a limited number of other things that case lymphocytes in the small intestine, and blood tests were also negative for Crohn's and IBD. And there's a lot of circumstantial evidence. A month or so before my gastroenteritis, I came up slightly hypothyroid on a routine physical. And within days of ceasing to eat gluten, my anxiety and panic attacks stopped...
...though I'm now about 2.5 weeks off gluten, and while I think my gut feels better, the abdominal pain is still significant. My gut churns embarrassingly loudly after I eat - and that didn't start until about the time I gave up gluten. I'm really, really hoping all of this calms down soon. I hurt! In a way, I'm glad of a diagnosis, because it means maybe I can stop feeling bad soon, but I wish it were a little more solid.
I guess my one remaining hovering terror is that I'll be refractory - I'm 37, so wasn't diagnosed young. With the DQ2, I have a higher risk of EATL, too, so I'm really anxious for my pains to go away and ease my mind.
I know it varies widely, but how long does it take to have abdominal pain and gurgling go away? Anybody have any soothing thoughts?
Edited by Lirren, 09 January 2014 - 11:22 AM.