Some test results back...bummed out
#61949 - 04/16/04 02:12 PM
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Vicam
Reged: 02/24/04
Posts: 1955
Loc: Ontario, Canada
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Hey Everyone,
I went into the docs today to discuss what to do about my iron levels, and found out that the celiac blood test I had done came back negative...I hope this doesn't make me odd but I was kinda hoping it would have been positive, because then at least I would know what I have to do to feel better. Plus, it would have explained alot of my symptoms including the iron defiency and severe edema I get in my legs and ankles.
My doc said they could do an endoscopy to be sure, but that would be up to the GI guy, and as many of you know the GI guy doesn't want to test for celiac because "I'm not thin enough". I know it's likely just IBS, but I still feel I deserve a chance to get everything ruled out...so I'm kinda upset.
Sorry, just venting for the most part, I hope it doesn't seem weird that I'm upset with what most people would consider a good result 
Kelly
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Toatlly have been there and do get where you are coming from. I think the quest for a definitive answer and solution would be everyone's dream come true. In Heathers book in the beginning where she lists all the things you should have ruled out on page #2 I am still working on ruling out Celiac and food allergies. These two seem to be not an exact science and it is frustrating to keep wondering about them.
Hang in there and you can always demand the endoscopy, just don't make the mistake I did and not be eating gluten at the time.
Cindy
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I want to say I'm sorry because I think that's what you want to hear, but I'm really happy for you because the results are excellent.
Kelly, this IS a good thing. Now you can deal with just the IBS, not the celiac stuff. And, remember, we can get this in remission; we're all working toward that goal. We'll work with you, honey, you're not alone.
I'm having a little problem with the fact that "it's up to the GI guy." I mean, isn't it up to YOU? When did you lose decisions about your health? If you want it done, get it done. Maybe I don't understand how it works in Canada, but aren't you entitled to have the procedure if you think it will help you rule out something you fear? What if you called the GI and said you want it done, period.
Hope I'm not out of line here....
Bev
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<img src="http://home.comcast.net/~letsrow/smily3481.gif">Bevvy
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Hey Bev
#61960 - 04/16/04 02:35 PM
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Vicam
Reged: 02/24/04
Posts: 1955
Loc: Ontario, Canada
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Hey Bev,
No, you're not out of line, don't worry  I appreciate any advice or suggestions you have.
To be perfectly honest, I'm not exactly sure who it's up to...the problem is that since everything is covered by health care here, we can't really demand a test the doctors feel is unnecessary because it's coming out of taxpayers pockets. I had to pay out of my pocket for the blood work, but you can't just pay for an endoscopy, so he can just refuse to do it. I'm sure it doesn't mean I can't have it done at all, it just means I'd have to keep searching for a doctor willing, which is hard given our situation of needing a referall a 3 month wait times for each new doctor.
So, we'll see what happens. I've always thought that it's likely IBS, but it would be nice to know for sure y'know? And I don't think that's too much to ask, and it's getting frustrating, because I've missed a lot of work and it would be nice to have an actual explanation to give my boss rather than just "I was stuck on the crapper" or something to that effect.
So, I'm going to wait and see what the Barium X-Rays and Colonoscopy show and go from there. I think my timidness and age isn't helping either, I let myself really get pushed around when it comes to doctors. My dad says a need a "patient-advocate" someone to come in with me and make sure I don't get pushed around So maybe that's what I'll do.
But I do appreciate your encouragement, I definately hope I can get this into remission!
Kelly
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I sometimes (well, actually often) feel like th GI docs in my past (all guy docs) looked at me like, oh here is another IBS female, all in her head, not as bad as she thinks type. You can just see it in their faces and hear it in their voices and the way most of them won't even look you in the eye, just at their charts. I've brought my husband in a few times to get firmer with them than I can be, and if you are on the quietier side or get easily discouraged bring along someone you know that is more forceful if that's what you have to do to be heard.  I'd choose another doc but there are only 3 GI docs in my area and health group, and I've been to all of them, and they are all the same.
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