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I'm Getting Recalled!


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23 replies to this topic

#1 Guest_DanceswithWolves_*

 
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Posted 03 September 2005 - 06:27 PM

Ok, I've been reading on here that I should have Gluten in my system for the celiac disease test. I did not know this! I received a phone call asking for me to return for more blood to be extracted, but I'm wondering if I made a mistake by not eating gluten products all this time. I've been eating gluten-free bread and only had about two cravings before my first set of blood tests. Both with Arby's bread. So was that enough gluten in my system for the first time they took blood? :unsure: :unsure: :unsure: :unsure:

I'm not sure why they want me back to take out more blood...maybe the first batch got tainted or spilled?
What should I do? Should I eat some crap food before I go into the hospital this Monday or Tuesday before the Celiac test? I need to ask them if they've already completed that test.
I also have an appt. to see a Gastro-doc this Thursday. I think he just wants to talk to me before any endoscope is done.

I'm still taking this Clidinium for IBS, but it really makes my stomach feel sick.
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#2 Rachel--24

 
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Posted 03 September 2005 - 07:38 PM

Weren't you eating alot of stuff w/ gluten in it before you got tested? It seemed like you were if I'm remembering correctly. I would find out ASAP which test they need the blood for. They may have already completed the Celiac test...in which case you wouldn't need to worry about it.
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#3 KaitiUSA

 
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Posted 04 September 2005 - 05:23 AM

Ok, I've been reading on here that I should have Gluten in my system for the celiac disease test. I did not know this! I received a phone call asking for me to return for more blood to be extracted, but I'm wondering if I made a mistake by not eating gluten products all this time. I've been eating gluten-free bread and only had about two cravings before my first set of blood tests. Both with Arby's bread. So was that enough gluten in my system for the first time they took blood? :unsure:  :unsure:  :unsure:  :unsure:


Eating gluten before testing if you have been gluten free is not enough. For testing you need to be eating about equal to 3 pieces of bread a day for 3 months.
Maybe they just need more blood for the testing or maybe something came back abnormal and they are testing you for other things.
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Kaiti
Positive bloodwork
Gluten-free since January 2004
Arkansas

Jeremiah 29:11- "For I know the plans that I have for you, declares the Lord, plans for you to prosper and not harm you,plans to give you a hope and future"

"One Nation, Under God"

Feel free to email me anytime....jkbrodbent@yahoo.com

#4 Guest_DanceswithWolves_*

 
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Posted 04 September 2005 - 05:36 AM

Eating gluten before testing if you have been gluten free is not enough. For testing you need to be eating about equal to 3 pieces of bread a day for 3 months.
Maybe they just need more blood for the testing or maybe something came back abnormal and they are testing you for other things.

<{POST_SNAPBACK}>


Well, I guess I'm screwed then.
I have been eating that Kinicky bread for well over a month now. Before that I was mistakingly eating that other bread (Kamut)....so this test will all be for nothing. Obviuosly I will have a negative for celiac disease. :(
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#5 KaitiUSA

 
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Posted 04 September 2005 - 05:44 AM

Well, I guess I'm screwed then.
I have been eating that Kinicky bread for well over a month now. Before that I was mistakingly eating that other bread (Kamut)....so this test will all be for nothing. Obviuosly I will have a negative for celiac disease. :(

<{POST_SNAPBACK}>


It probably would come back negative but there is a chance it could come back positive. It depends how high your results would have been and how much the gluten free diet brought the # down.
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Kaiti
Positive bloodwork
Gluten-free since January 2004
Arkansas

Jeremiah 29:11- "For I know the plans that I have for you, declares the Lord, plans for you to prosper and not harm you,plans to give you a hope and future"

"One Nation, Under God"

Feel free to email me anytime....jkbrodbent@yahoo.com

#6 SueC

 
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Posted 04 September 2005 - 08:00 AM

I was recalled for bloodwork too only to find out that it was because the first sample I gave broke in the centrifuge!! :(

I had a repeat bloodwork 13 weeks gluten-free and it was still positive. It was much better but still positive. It all depends on how much damage you had before going gluten-free. I would still have it done now and if it comes back negative go back on gluten and try again in 3 months, unless you think that will make you sick then just stay gluten-free, and know that you most likely have celiac. A positive response to a gluten-free diet is a pretty good indicator!
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Sue

Diagnosed April 2005 via bloodwork and endoscopy

4 year old daughter diagnosed March 2006 via bloodwork and endoscopy
She was completely asymptomatic

4 year old also diagnosed with Graves disease Sept 2006

#7 Guest_DanceswithWolves_*

 
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Posted 06 September 2005 - 01:28 PM

I went back to the hospital today to give more blood, and the nurse said that this vial would be for testing my liver. Maybe the doctor thought of that the last minute.
Thursday I visit the new Gastrologist doctor. I don't think I'm getting an endoscopy done right away, I think they just want to chat with me first. I have a paper to fill out.

What I'm wondering is after an endoscope is scheduled, should I eat some gluten-filled foods before they look down my throat?

I have a funny feeling they'll just say I have IBS. I'm down to 118 now. It's like a have 0% body fat on me. I look like I either have cancer or I'm a hardcore cyclist. :blink:
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#8 KaitiUSA

 
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Posted 06 September 2005 - 01:39 PM

I went back to the hospital today to give more blood, and the nurse said that this vial would be for testing my liver. Maybe the doctor thought of that the last minute.
Thursday I visit the new Gastrologist doctor. I don't think I'm getting an endoscopy done right away, I think they just want to chat with me first. I have a paper to fill out.

What I'm wondering is after an endoscope is scheduled, should I eat some gluten-filled foods before they look down my throat?

I have a funny feeling they'll just say I have IBS. I'm down to 118 now. It's like a have 0% body fat on me. I look like I either have cancer or I'm a hardcore cyclist.  :blink:

<{POST_SNAPBACK}>


For an endoscopy its the same as blood tests and you NEED to be on gluten for a while before getting it done. Biopsies are already hit or miss and a negative one can't rule celiac out anyway but if you are gluten free or just eat some before testing that would be just useless.
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Kaiti
Positive bloodwork
Gluten-free since January 2004
Arkansas

Jeremiah 29:11- "For I know the plans that I have for you, declares the Lord, plans for you to prosper and not harm you,plans to give you a hope and future"

"One Nation, Under God"

Feel free to email me anytime....jkbrodbent@yahoo.com

#9 Rachel--24

 
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Posted 06 September 2005 - 01:42 PM

I'm down to 118 now. It's like a have 0% body fat on me. I look like I either have cancer or I'm a hardcore cyclist.  :blink:

<{POST_SNAPBACK}>


Thats pretty much how I was before going gluten-free. I joined a gym so I could use their sauna and steamroom and they gave me a free consult. trying to get me on some program. They did all the measurements and I had like almost no bodyfat. DUH..I didn't need a machine to tell me that! The guy thought it was great...even healthy to have such low body fat. I was like "Can you not see that I'm wasting away?" :blink: I don't see whats healthy about that....and "NO...I don't need a personal trainer at this time...what I need is a good doctor." :rolleyes: That was before my diagnosis..I'm gaining now. :D
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#10 julie5914

 
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Posted 08 September 2005 - 08:29 AM

Yeah, if you can stand the wait, have them schedule the scope a couple months out so you can eat gluten for that time, about 2 pieces of bread, as Kaiti said. Otherwise, it sounds so much like celiac and sounds like your health is falling fast, you could just skip the scope, go gluten-free now and start feeling better. Be strict if you do! Likely, the only thing you will have after a positive scope is a piece of paper you don't even get to keep unless you request it saying that you have it, and then you'll be told to go on the diet.
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Blood work positive
Dx with IBS 5 years ago
Dx with Celiac and gluten-free since 6/17/05

#11 Guest_DanceswithWolves_*

 
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Posted 08 September 2005 - 08:39 AM

Yeah, if you can stand the wait, have them schedule the scope a couple months out so you can eat gluten for that time, about 2 pieces of bread, as Kaiti said. Otherwise, it sounds so much like celiac and sounds like your health is falling fast, you could just skip the scope, go gluten-free now and start feeling better. Be strict if you do! Likely, the only thing you will have after a positive scope is a piece of paper you don't even get to keep unless you request it saying that you have it, and then you'll be told to go on the diet.

<{POST_SNAPBACK}>

Well, what I'd like to know if there's any real noticeable damage done down there. It's funny, though ever since I started really researching this and buying gluten-free foods, I'll notice that my mother and father belch quite a bit. When I said something just etasing them "See... you have it too!" LOL , They were like "Everyone belches". If my stomach starts making noise my parents just say..."you're just hungry". I think most of their comments are too calm me down.
I'm on Prozac right now...Day 14. I am keeping a log of symptoms I feel every day. I'll jot down anything.
I'll probably be told that I just have IBS. I tried exercising yesterday and I had a hard time doing 20 push ups. I lost much of my weight around my torso and my legs. I used to have a butt, too. LOL
I will keep that in mind about scheduling the Endoscope further down the road, even if it means I have to eat Gluten again, and take my chances with the fatigue and IBS.

I'll keep u all posted!

Thanks again for being there! :D



Erik
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#12 Guest_DanceswithWolves_*

 
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Posted 08 September 2005 - 12:26 PM

Just got back from the Gastro Doc.
After asking a series of questions (more phycological) he went to his computer and linked up with my other doctor for the results of at least some of my blood tests.

He then tells me "You don't have Celiac Disease". It's almost like I didn't hear him say it at first. "You have IBS" He listened to my stomach and took my blood pressure.

So, I told him that from what I've read and heard that if I've been Gluten-Free for awhile now, that wouldn't the test be naturally negative?

He suggested that becuase I cut out all the foods that I've been eating normally before my move to Texas and the stressful job, that is why I lost the weight.

SO I said, "should I just start eating tons of junk food then?" He suggested I eat what I like. He thinks I have reduced any body Fat becuase I am not eating stuff like donuts, cake, etc. He suggested putting back on the weight and then we can draw more blood and test for celiac disease again. I should keep taking my Clidinium for the IBS and stay on the Prozac. I meet with him again in mid-October.

What a humbling experience. Now I feel that maybe I just obsessed and "created" all my symptoms. I even told him about the chills in my hands and feet, but maybe it's because my body is not taking in enough fat content. I know you need fat to maintain a healthy body to some degree.

He's sending me a copy of the results.

I think I'm gonna eat a pizza and drink a beer. F- it.
:(
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#13 Guest_nini_*

 
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Posted 08 September 2005 - 12:31 PM

Erik, keep in mind that IBS is just a catch all terminology the medical types use when they don't really know what is causing your probs. It is a SYMPTOM, not a diagnosis. So many think it is a definitive diagnosis and it is not.

My suggestion... if you are feeling badly, go ahead and try the diet and forgo any further testing UNLESS the diet doesn't help you at all. But give it time, several months at least, before you give up on it.

(My little disclaimer... I work in an alternative health care field: chiropractic and massage therapy, and do not have much faith in the medical dr.s at this point. They missed my dx for 34 years and I almost died because of it.)
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#14 Guest_DanceswithWolves_*

 
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Posted 12 September 2005 - 06:35 AM

Well, it's been "Day 4" of eating . I've had pizza twice in those four days but I am still going easy on the bread. I woke up this morning and my hands were like ice(even before I took my Clidinium capsule for IBS) I think these pills are time released or something. Some of the side effects are "yellowing of hands" which I have, but I also have very dry hands. It's so strange. Eight months ago, I was taking PPI's almost every day because of my bloating and I had the chills back then; I wasn't even on the Clidinium. Maybe I am just highly sensitive to all these meds?
I'm drinking hot teas all week and it's still summer! :huh:

I haven't heard anything back from my tests besides the gastro-Dr. pulling up my chart and saying "I don't have celiac disease".

Like I said before, he wants me to eat donuts, cake, breads and other stuff to fatten up.
Maybe that's why I am so cold at times.
I am still keping a journal of any symptoms that pop up along the way. Mentally, I feel a little sharper, probably because the Prozac is starting to work. Even though I had to work all weekend, I felt pretty good.
:)
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#15 Rachel--24

 
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Posted 12 September 2005 - 09:00 AM

Erik,

I had yellow palms, cold body temp, and dry skin the whole time I was sick. I figured it was due to low thyroid but my thyroid always tested fine. I didn't believe the tests since these are all signs of low thyroid. On my own I decided to increase my thyroid meds..I was taking 3 times what I'm suppossed to take but the symptoms were still there and I was still freezing. I took a thyroid test and my doc was irritated cuz my numbers were sky high showing that I was taking waaay too much. Anyways as soon as I took gluten out of my diet my body temp went up and all those symptoms went away. It was definately the gluten causing those things and nothing else. I think you're better off staying on the diet...my original bloodwork was negative too and I went back to eating gluten and I got seriously ill from it and thought I might die. Maybe you can try Enterolab...thats what I did and everthing came back positive.
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