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Rebecca92

Member Since 06 Aug 2011
Offline Last Active Nov 14 2013 05:25 PM
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Topics I've Started

Positive Blood Tests But No Biopsy

07 November 2013 - 10:52 PM

So I was diagnosed via a celiac panel approximately three years ago and have been gluten free since (minus the rookie mistakes and CC) My symptoms have definitely gotten better but I don't feel 100% so I decided to see a gastroenterologist I've been having a lot of nausea with some vomitting along with having to run to the bathroom a few time a day but had trouble going off and on . While I'll admit that sometimes I mess up and CC myself (I live with gluten eaters lol) there's no way it's gluten related I am extra careful when preparing and choosing food and cosmetic products. I had an endoscopy at a drs.office a few months ago and they did find a small ulcer and said that my small intestine was inflamed but didn't seem too worried about it, but honestly I don't trust the guy anymore he spent a total of two minutes talking about my results :\ but that's another rant. They gave me horse pills to take twice a day before I eat and being that I'm young and in college of course I never ended up taking them all. The gastro doc gave me a two week supply of an acid blocker to try to heal up an ulcer if there is one.  The gastro was surprised that the positive celiac blood test wasn't followed with a biopsy of the duodenum because there are false positives with blood tests. He said they would call in two weeks and see how I feel, and if I'm not feeling great then we should go ahead and schedule and endoscopy and a colonoscopy. Obviously I'm not thrilled with this idea so I'm hoping the acid blocker works (which the nasea is getting better) but if I'm still having "bathroom" issues and an extremely tender abdomen on the left side I'm thinking about doing the tests. For the endo he said that if I am a celiac even if I've been gluten free for almost three years I will most likely show some damage and also mentioned checking to make sure there's not a small bowel malignant tumor or something and the colonoscopy to check for microscopic colitis. I'm thinking about maybe just doing the endo for now and only doing the other if I get no answers. It was extremely scary to hear him say the word cancer he said that about 3% of celiacs get the malignant tumors. I was just wondering if anybody had any advice or if anyone knew what exactly he meant by false positive, if it wasn't celiac then what else could it be? I mean whatever it is it obviously likes a gluten-free diet so there's no way I'm going back but it just has me wondering, the doctor didn't really explain much about false positives. I'm sorry if this seems long or rambling but this is the only place I can ask these kinds of questions talk about these things without people getting grossed out or confused lol unfortunately I am the only celiac I know in R. The chapter in my town always meets on saturdays...and I always work saturdays. Go figure lol


Microscopic Colitis?

04 November 2013 - 01:49 PM

I've been having some digestive issues lately so I decided to see a gastro doc. A little background info though: I was diagnosed with celiac through a blood test about three or four years ago, and she never did a biopsy to confirm the diagnoses.My symptoms have improved significantly with the gluten free diet so I do really think that it is celiac disease. but the symptoms haven't completely disappeared. Sometimes it is my fault because I accidentally contaminate myself (I live in a gluten eating household although they try their best to keep things safe) but sometimes I have done everything I can think of to make sure it's safe and I'm still having issues. Within the past couple of weeks I have been experiencing extreme nausea sometimes followed by vomiting, my stomach is really tender to the touch on the left side, my stools have often been yellow and thin with mucus or undigested bits of food (TMI I know I'm sorry!) and it often takes me 5-6 bowel movements to feel like I'm "empty" and sometimes it's just mucus that comes out when I try. This is different from when I get glutened because their isn't a whole lot of stomach pain (some but not the intense stabbing pain of glutening) The doc seems to think it could be Microscopic Colitis which is apparently another autoimmune disease that goes hand in hand with celiac. Does anybody else here have this? Were you having similar symptoms? 

He also mentioned a condition that effects about 3% of people with celiac. It quickly can cause a kind of cancer in the colon I think he said, but I can't remember the name of the condition to save my life, but he did say that if it turns to cancer that nobody survives. He says it's most likely not that but it could be. If anyone has any idea what I'm talking about I'd appreciate the name of it, I had so much information to take in from him at once the name has slipped my mind.

In august I had an endoscopy (done by a different doctor) that found inflammation in my stomach and a small mild ulcer in my stomach (probably caused from use of ibeprofen plus stress), they prescribed sucralate (which my new gastro doctor said wasn't a very good med to give for ulcers.) My new gastro doctor gave me dexilant (an acid blocker) to take for two weeks and see if that improves the symptoms. If it doesn't after those two weeks were going to do an endoscopy to get a biopsy of the duodenum and a colonoscopy to get a biopsy of the colon to check for microscopic colitis. I'm hoping this medication resolves it. I was under the impression that a endoscopy after you go gluten free is useless, but he told me that it is rare for someone with celiac disease (assuming they haven't been gluten free for a long long time) to have a completely healed intestinal tract and that he should still be able to see villi damage.  

This has been such a frustrating process, and I am getting so sick of not feeling good whether its diarrhea or extreme nausea it never seems to stop. I just want some for sure answers. I am hoping that someone here has had similar issues or if there's anyone here with microscopic colitis, and how they manage it all the information I found online said there was no real treatment... I'm sorry this is long and probably rambles quite a bit, but hopefully someone out there has had the same issues!


Legs Really Sensitive To Touch

03 July 2013 - 05:28 PM

Just running my hands over my legs makes them hurt almost like a big bruise but there's no bruise. I got a massage the other day and it was painful when they got to my legs. It's mostly the calf and my inner and outer thigh. Could this be some sort of vitamin deficency or something? Anybody experience anything similar? Any advice would be appreciated!

Nashville Doctors

18 April 2013 - 09:10 AM

I've decided to switch physicians, my current one sends me for all kinds of crazy expensive tests for little things like a stomach ache and very low fever. I feel like these tests are unnecessary not to mention costly! I'm looking for a new family doctor, maybe one that has an understanding of celiac. I'm scared to switch doctors because I don't want to end up with one that thinks gluten free is just a fad. I need a Dr that will take my celiac seriously. If anyone has any suggestions that'd be great! I'm willing to go to the nashville area or murfreesboro area. 


Stuff People Say To Celiacs

10 March 2013 - 12:05 PM

I don't know if anyone has shared this video here before but I just ran across it on youtube and I thought it was hilarious, mostly because I have heard about 99 percent of everything on this video. Just a little bit of humor to brighten your day :]

 

Heres another one "Stuff Celiacs Say"