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Lirren added a topic in Celiac Disease - Post Diagnosis, Recovery/Treatment(s)Borborygmus: Not Just For Scrabble AnymoreHi all,
I am so sorry to be posting so much in this forum, but I feel like I'm close to losing my mind for lack of information, and it is SO reassuring to be able to hear from other celiacs. (Please don't cut me off, mods.
I've hit the three-week gluten free mark, and seen some reduction in my abdominal pain, but one thing that hasn't gotten better yet is the intestinal rumbling. It isn't painful, but it's aggravating - and sometimes in extreme cases, accompanied by an uncomfortable twisting pressure just short of being painful.
It kept me awake for an hour last night. As soon as I wake up in the morning, it starts up. It will quiet down a little between meals, but as soon as a few bites are in my stomach (before anything could have hit my intestines!) it starts up again, and continues for several hours after my meal. And I'm having multiple BMs every day. Even when I don't have D, it's common to go 2-3 times.
And, oh yes, there is gas. So much gas. Thankfully it doesn't have an odor, but it's very uncomfortable. Moreover, it's frightening - isn't borborygmus supposed to be a result of malabsorption? I would really like to be seeing some improvement. (I know, I know, have patience...! But I'll be much less frightened if someone can tell me if this is normal!) I rarely drink carbonated beverages but lately have had one ginger ale or caffeine-free diet coke with lunch - I wouldn't think that would cause gas that would last all day long, but perhaps I'm wrong? For now, I'm going to try cutting them back out.
I've started taking a probiotic, Florastor, but perhaps it's not the best one. In any case, if anyone has a better recommendation - and one that is chewable or smaller, please! - I'm all ears. I am a wimp about pills, and the Florastor capsules are so big I have to open them and dump them into a cup of water, and then drink the yeasty, gritty result. Blech. It hasn't yet seemed to produce much in the way of relief, anyway.
The first three months of my abdominal pain, when my doctors thought I had diverticulitis or IBS, I didn't have this gut-churning habit. For a long time a doctor had me on methscopolamine, which is an abdominal anti-spasmodic, and I'm wondering if it would be to my advantage to start that up again. I didn't think it was helping, but perhaps it was slowing down these spasms. (Then again, I didn't notice a lot of gas in those days, and shouldn't it have to go somewhere...? I'm not sure if this is a new symptom or one that the methscopolamine was suppressing previously. But certainly it is new compared to, say, last August.)
My first appointment with a dietitian is Monday, and I think she will have some good answers (and probably a list of multivitamins) for me, but Monday seems a really long way away. Am I normal? Am I recovering? Is my gut going to spontaneously tie itself into knots, and if so, will it come out like one of those artful balloons circus clowns create? Help!
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Lirren added a topic in Celiac Disease - Post Diagnosis, Recovery/Treatment(s)Specialists In Nashville?I'm finding myself still very anxious and uncertain that my GI doctor has done a good job thoroughly checking out/testing alternatives. Mostly, I want a doctor I can actually discuss my concerns with - and my current one doesn't communicate. Combined with his staff's lack of follow-through (not refilling prescriptions, even when the pharmacy is following up too; not providing me with the number for the dietician they said was forthcoming), and especially if I'm going to be dealing with celiac and the associated health risks long-term, I need a different doctor.
Does anyone know of a gastroenterologist at Vanderbilt Medical Center who specializes in celiac? I called the referral center and they said "many do - about 35," so I wonder if the woman on the phone was just referring to the number of gastroenterologists. I know Vanderbilt is supposed to be very good and it may be my closest option if I have to go out-of-town.
I'm in Memphis and would prefer to stay local, but I haven't had much luck pursuing that line of questioning in town.
Thanks for any advice!
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Lirren added a topic in Celiac Disease - Post Diagnosis, Recovery/Treatment(s)I Guess I Post Here, Now!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?
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Lirren added a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsOff Gluten Before Blood TestI know this is a no-no! It wasn't something I did deliberately. I followed my doctor's instructions and kept eating gluten until my blood was drawn, and then stopped eating gluten to see if it improved my symptoms.
However, the local lab messed up the labels on my vials, so the receiving lab couldn't use them. I was nearly a week into eating completely gluten-free when they called me back and told me I had to come back in for another blood draw.
I tested negative for celiac, but based on results from my small intestine biopsy, my doctor still thinks it is more likely to be celiac than any of the other causes of small intestinal inflammation. He is following up with genetic testing, despite it being less specific.
Is it possible that the test was negative because I'd been off gluten for six days? I didn't think antibodies disappeared from your bloodstream that fast. Unfortunately, I can't say which serological tests were run, and whether they looked at total serum IgA. I intend to ask the lab for more information today.
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Lirren added a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsBiopsy In, Blood Tests TomorrowAfter two months of adominal/stomach pain and increased lack of appetite, nausea, anxiety, panic attacks, I had a colonoscopy/upper endoscopy last week with biopsies. They came back showing inflammation of both upper and lower GI. I'm going in tomorrow for blood tests for Crohn's, IBD, colitis, celiac... I am hoping for celiac at this point honestly! It is far preferable to the other options.
I'm wondering if my symptoms sound like celiac to others "in the know." My abdominal pain came on quite suddenly after a bout of stomach flu but I'd had a couple of "twinges" in months prior, like it was just getting ready for something to set it off. Since then it's been pretty constant, sometimes better, sometimes worse. My doctor's first diagnosis was diveritculitis, and the cipro and flagyl made me feel oh, so much worse! My ovaries got an A+ at the GYN's office so I went to a gastro specialist. CT scans all clear - colonoscopy looked perfectly fine - it took the biopsies to find something definitively wrong.
I haven't had much diarrhea - more constipated than anything else - except this past week when I've found it particularly hard to eat, so I drink a lot of my calories. A few times, though, I have noticed my stool (sorry, but it's that kind of forum!) has smelled oddly, strongly sweet. Does this ring any bells with anyone?
I'm sure it's strange to have someone in this forum hoping for a diagnosis of celiac, but please tell me I could be one of you. I'll give up bread. I can drink wine and sorghum beers. Just say it ain't IBD...
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