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Opinions?


Chatakat

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Chatakat Newbie

So I'm looking for some other opinions to see if my issues sound like Celiac or not. This will probably get long, lol. Starting after I had my daughter 3 years ago, I began having GI issues. At first it was the occasional diarrhea, I didn't think much of it. Since then it's progressed a lot. My stomach/bowels are basically never happy. Whether it be some type of discomfort, etc..

So about 2 years ago, I started going to my doctor for these issues, and she immediately told me I have IBS, and started me on medications. I eventually tried 3-4 different medications, none of which ever helped. Most of the time they just made me constipated. The only thing that helped was the lomotil for the diarrhea/cramps. So since that worked, I just gave up and figured it was going to be this way. In september I ended up in the ER from the diarrhea/cramps/severe abdominal pain. It's one of the only times in life I was unable to function due to pain. They did some bloodwork, gave me bentyl, and sent me on my way saying flare up of IBS symptoms. My Doctor was pretty much useless at this point. I kept asking to see a GI doctor, and she literally told me that all they're going to do is scope me and find nothing wrong because I'm young. Needless to say, I switched doctor's after that. My new one was much more sympathetic to the situation. He did an ultrasound (which revealed sludge in the gallbladder) and a variety of bloodwork. Most of which came back normal except anion gap was low, and my vitamin a was extremely low. The Vit A led him to believe I have celiac. He referred me to a GI doctor, and did the bloodwork for Celiac, which came back negative. I have another two weeks before I see the GI doctor. So last week I decided to start going gluten-free in an attempt to see if it would help. And physically I do feel better, I have more energy, etc... However my bowels are still a mess.

I'm just at a loss because I can not continue to function like this. I have episodes usually at least once a week. I just had one on tuesday where I had to leave work because the pain was so bad and bentyl wasn't helping. I almost considered going to the ER again since I had chills for a bit as well, but it subsided. The episodes come out of no where sometimes. I can be feeling fine, and 10 minutes late thinking I'm going to die. My pain is almost always in the LLQ. Sometimes I can have diarrhea or bulky stools and feel fine, other times I'm miserable. I've lost 20lbs since October. I just want to feel better. :(

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QueenEe Rookie

oh gosh, that must feel awful, I feel really bad for you!

I was diagnosed with celiac with negative bloodwork, just based on my experience, but as i was reading your post I recognized lots of what you described: bulky stools, pain in the lower left quarter of the abdomen, and now I'm remembering that a few years ago, before I started on this whole celiac journey, I ended up in the ER because of the pain in my abdomen. My mother was scared it was my appendix (it was on my right side then), and they did an xray, which showed a small stool in my system, but everything else was fine. the doc told me the stool shouldn't be bothering me, and sent me home. Well, if that stool shouldn't have been bothering me, then how come I ended up in the ER because of the pain it was causing?!?

Looking back, it must have been the celiac at work (or else theres something else going on inside of me that i'm not aware of :() I hope everything works out for you, but from what your describing it definitely could be celiac and something else (with your liver).

Please let us know what your tests show, i'm really curious to know what it might be. I wish you lots of luck and a speedy recovery!

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    • trents
      What kind of stool test was done? Can you be more specific? 
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    • cristiana
      HI @Kirbyqueen That's great news your insurance will be kicking in soon.  Sorry to see that you have been dealing with this for six months now, but I do hope you have managed to find some relief with some of the suggestions in the meantime. Perhaps come back and let us know what the doctor says. Cristiana
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