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Very Frustrated - Colonoscopy After 9 Month Wait - No Upper Gi

Tracylew

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Tracylew Newbie
Tracylew
Posted

I used to post on here months ago. I had my doctor send me for blood tests which came back negative for celiac. I have since had a colonoscopy (2 weeks ago) but after a 9 or 10 month wait for this test, he did not do an upper GI. I was devastated to say the least.

Colonoscopy revealed a polyp (removed) but nothing else. This is good news of course, but now I'm no further along finding what is wrong with me.

I was diagnosed with IBS at age 3. Since then, no matter what I feel like, how terrible my symptoms are, I have been ignored - a IBS diagnosis in my opinion is like a life sentence of having doctors ignore you!

My symptoms have worsened. I have deep ache in my limbs, esp. hands, lower arms and my legs, esp. lower but sometimes upper. My doctor thinks I now have migraines. I have such severe diarrhea at times that I miss work (like today). I have fatigue and nausea - I feel really sick when the bouts of this are as bad as I had today. I was RUNNING to the loo so often that I had to go home as the urgency was awful (not to mention potentially very embarrassing as loosing control happens to me!)

I am lactose intolerant and am really pretty good at avoidance of dairy. When I'm not sure I take Lactaid.

The GI doctor told me in my initial meeting that he was "almost certain" it is IBS. To rule out anything else, I wish he'd done the upper GI to put my mind at rest and then I could move on from this Celiac thing!!

I am overweight, but I did have a child at age 43 and I'm now 47. It's been hard after 40 to lose the weight - not to mention how difficult it is to exercise when I need to be near a toilet most of the time.

I no longer feel all that comfortable going out and doing family things. Tonight I have a meeting and I'm really not feeling well after a day on the toilet. Plus it's not over yet! Work is just stressful now.

I don't know what to do now. I like my doctor (I see her for test results next week). Do I insist she send me for an endoscopy? She is older than me and was in medical school when the doctors all thought that Celiac was rare and occurred in childhood, and caused a child to be very very thin. I wonder if she is knowledgeable now about Celiac?

Rant over - have to attempt this meeting now!

Hope you have input - all I really want to know is what do I do now? I've certainly accepted the fact that my IBS could be worse - but need to know for sure.

Tracy

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psawyer Proficient
psawyer
Posted
I used to post on here months ago.

Welcome back, Tracy. This is your first post under this identity. So we can find your earlier posts, please tell us what your screen name was then.

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Tracylew Newbie
Tracylew
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Posted
Welcome back, Tracy. This is your first post under this identity. So we can find your earlier posts, please tell us what your screen name was then.

Hi Peter - I tried logging in with what I used before and it didn't work, so I logged in under a different name - I think my screenname may have been Chantalle but not sure.

Tracy

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ang1e0251 Contributor
ang1e0251
Posted

You can demand an endoscopy but not if you have to wait months to get it. If that is the case, I would just begin the gluten-free diet and never look back. That is a personal choice and it's OK if you want to wait and have the test. Maybe if you explain to your dr how the gastro screwed up, your dr can pressure them to have the test very soon.

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Tracylew Newbie
Tracylew
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Posted
You can demand an endoscopy but not if you have to wait months to get it. If that is the case, I would just begin the gluten-free diet and never look back. That is a personal choice and it's OK if you want to wait and have the test. Maybe if you explain to your dr how the gastro screwed up, your dr can pressure them to have the test very soon.

Hi and thank you for your reply. I'm in Canada, and yes, we often have to wait too long for tests - but it is not long of a wait if it is life-threatening, etc. Than you can get tests right away - or if you show up in Emergency - then you get the fast-track and get every test done you need immediately - not good really, as all that does is fill up Emergency rooms with people who could be seeing their doctors instead!

I see my doctor next week and will mention to her my frustration at waiting so long and NOT getting the endoscopy. I was going to go gluten free as a trial long ago but decided to wait since I know I have to be on gluten for accurate testing. All this time for nothing! Grrr! My friend has celiac and I'm sure she will "train" me as to what not to eat, etc. when I want to trial gluten-free.

Thanks again - I'll have to prepare myself to demand my doctor send me for the upper GI soon - I really don't want to wait so long this time.

Tracy

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