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Member Since 11 Mar 2013
Offline Last Active Mar 12 2013 05:49 AM

Posts I've Made

In Topic: Do I Need To Expect A Shorter Life Span?

11 March 2013 - 07:19 PM

Wow!  Get your test results and figure it out.  It is so hard to go through confusion while you are sick.  .  You know that you can test negative and still have a gluten intolerance problem.  I hope you will get some definitive tests and Soon.



Yeah but would just an intolerance problem drop me down from a size 8 to a size 0 in about a years length of time? I mean could I be THAT intolerent even without Celiac? I guess I'd prefer that cause then I won't have to worry as much about the cross contamination thing but...just wondering. 

In Topic: Do I Need To Expect A Shorter Life Span?

11 March 2013 - 02:52 PM

Yeah it was just an ANA that was run I remember her saying an ANA and they were saying no indication of Celiac from the ANA, but then I just called and insisted that someone leave an urgent message for my Endocrine doc about this and they sent her a priority email saying I want to be specifically tested for Celiac as it was just an ANA done. 


So I could still have it even if the ANA is fine? 


As for, Kareng, I plan to do that I'm going to make some rice with chicken broth cause I know chicken broth can help sooth the stomach but it's just so bad at this point. With any hope they can get the test run tomorrow. Yes I have been eating a gluten diet forever now I never switched I just thought that might be the better thing to do, if I should wait for the test then I will wait. 

In Topic: Do I Need To Expect A Shorter Life Span?

11 March 2013 - 02:15 PM

I just called the actual hospital that did some tests. The nurse says there's no indication of it cause they did do some sort of check for anti bodies but I didn't hear her say what tests they did. I know that when I asked the nurse at the office I just called she said that I didn't have the panel done. The nurse I just talked to said that she was going to send an urgent message to my doctor so she'd get it tomorrow and give me a call because I'm interested in Celiac testing so when I'm hearing is that official test wasn't done. No one is really being clear here and I'm too upset now to even try to get an answer out of anyone.


You need to understand these symptoms have been going on for MONTHS and I am sick all the time. Like I said, I can't even eat right now. I'm scared that this isn't it, because if it's not, I've already been tested for Crohn's disease quite a bit, but that can still show up in my age range (though I've been having symptoms like this for years just not as severe as they've been in the past few months) 


A blood test is going to be far quicker than waitinf for my GI doctor and I don't have 9 days as I just can't eat. Now I have to go another night worrying about all of this because the first hospital isn't at ALL trustworthy. 


Is there anything mild I can eat, even if it does have gluten, so that I won't get violently ill? I don't want to mess up a test if they do it tomorrow by avoiding gluten but I don't want to be sick any more either. I don't think they did this specific test, because she said they only ran some blood tests to check for the antibodies and those came back fine so...if those come back fine does that mean there's not chance of this? 


I'm just really scared here. 

In Topic: Do I Need To Expect A Shorter Life Span?

11 March 2013 - 01:48 PM

Blood tests are pretty accurate - assuming you had the right tests. Get a copy of the blood work and see if they even did any Celiac blood work. Sometimes, they order the wrong thing.



When I talked to the nurse today I asked her if any tests were run for this, she said no. 


Then I got a call from a different doctor (GP) who said that she did run tests for this (though when I was at the appointment she didn't say she was running a test for this she just said something about an ANA and HIV test. That's all I was aware she was running. 


Keep in mind these are two different doctors at two different hospitals. 


When I talked to the first nurse she said in order to get THAT test run I'd have to do something specific, that they had not done that test. The other nurse INSISTS they did the tests and that I don't have celiac. 


As the OTHER nurse was kind of flippant and I don't at all trust that specific hospital at all, I just kind of HAVE to go there cause of my insurance, I guess I'll have to check for this test. 


I need to get into my chart on the Cleveland Clinic site as if this test was run would have been done in Endocrine not at this other place that I hate. And the nurse that said that the test was NOT run, was the endocrine nurse. I'm hoping that this first nurse is just being flippant like the doctor at that clinic because I honestly never plan to go back to that clinic with the way I was treated. 


Either way I will get into my chart and look for the results to see if they even ran the test or not. I don't trust that they did. 

In Topic: Do I Need To Expect A Shorter Life Span?

11 March 2013 - 01:28 PM

I just got a phone call (and it took her long enough as I called for the results last week of this test) that it says I do not have celiac....but there is a chance of a false negative right? 


See here's my problem. I am way too skinny....WAY too skinny. 


If my problem isn't Celiac because the doctor is saying the blood test says it's not (and she should have called me a week ago when she said I could call for results, which I did, then what could it be? 


Cause all I'm seeing is Crohn's disease now and if it's that, then I'm in trouble right? 


I was told by a nurse, that a false positive is actually rather common for the blood tests that's why they do a biopsy to confirm. You need to understand that if it IS this (and I did hear doctors tossing around the idea pertaining to me) then me eating gluten for the next 9 days is not an option. I am becoming violently ill with just about anything I eat. My stomach is so bad at this point I can't eat a cracker without getting insanely nauseous. I can't keep this up for 9 more days until the test. I also cannot get ahold of my GI doctor. Would it be best to just call and try to get a different doctor or talk to one on call? 


This guy is impossible to get ahold of I've tried every day for a week, I can't even get a receptionist. I keep getting a message that says the business hours and if I got that message to keep trying back cause that means they are busy, which I do, several times a day and nothing. 


I cannot keep living like this for 9 more days, I can't get ahold of my doctor, and then I get a call from a different doctor who said she ran this test that it's not Celiac. So I'm not exactly sure what to do at this point. 


Any advice? Because doctors suggest this, but because I'm seeing 3 different kinds of doctors right now I don't think all of them are getting all the information. 


Not exactly sure what to do here. I'm really really upset because if it's Crohn's I'm going to freak out. I already know someone who has that and in her early 20's she needed to get a bunch of her intestines removed. I don't need something like that. I'd much rather it be this but now it doesn't sound like it is. 


Any help? 

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