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Upset Over Endoscopy Results! This Happen To Anyone Else?


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19 replies to this topic

#1 jamiecasabellameeks

 
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Posted 21 March 2013 - 11:30 AM

Okay, so I had my biopsy on Monday and was told they should have the results back by Friday (tomorrow). So, I just called to see if results were back yet.  I was told that they do not give test results back over the phone and that I would have to wait until my follow up appointment, which is scheduled for A MONTH FROM NOW!!  Did anyone else have to wait for their POSITIVE test results??? Or does this generally mean that they do not suspect Celiac???  

 

I should also let you know that on my Endoscopy pictures, it said "mild cobblestone duodenum of the 2nd portion", "Gastritis antrum", and "Hiatal hernia".  On my blood work I had before the biopsy, I was positive for Anti-Reticulin antibodies and Vitamin D Deficiency.  Other tests were negative.

 

PLEASE HELP!!!  Do I have CELIAC or not!!?? That's ALL I want to know! :(


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Jamie :wacko:

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#2 psawyer

 
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Posted 21 March 2013 - 02:22 PM

The cynic in me says the doctor gets paid a lot more for an office appointment than for a phone call which he may not even personally participate in.

If you are in the US, you could go to the doctor's office and get a copy of the report. You have the legal right to see just about everything in your medical record, and to receive a copy.

Then come back here and share. We aren't doctors, but the collective experience and wisdom here is huge.
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Peter
Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000.
Type 1 (autoimmune) diabetes diagnosed in March 1986
Markham, Ontario (borders on Toronto)

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#3 nvsmom

 
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Posted 21 March 2013 - 02:24 PM

(HUGS) Sorry about the weight.

 

Right now, I would assume you have celiac from your ARA test. I'm afraid I know nothing about biopsies since I never had one. I hope someone can offer you advice on that.

 

I can't remember if you had the entire celiac panel done, but if you haven't you could use the wait time to complete your celiac testing before going gluten-free. Any doctor can order them.


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Nicole Posted Image

"Acceptance is the key to happiness."

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#4 Takala

 
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Posted 21 March 2013 - 02:55 PM

Agree with Peter.

 

Try visiting the office at a time when they are less busy, and sweet talking them into getting a copy of your test results.  In the USA, they have to provide you this.  I did this once when a doc was pulling the "wait 6 weeks for the next appointment" routine and then cancelled the appointment on me without notice, so I was there anyway, sans the doc. I think. Maybe she dashed out the back into the alternate universe... who knows. :wacko:  Then they made me wait some more (week) for the next appointment, and the doc didn't know that I had the test results until I started asking specifically about what it meant on the images, regarding "xxx" when said doc tried to claim that the tests didn't show damage.  :angry:  :blink:  I don't know how the heck I kept my composure, but I did.  No, I wasn't going to croak the next day or anything, but at least there was a reason for the ataxia.

 

In the meantime, take a deep breath, and try to remain calm.  They eventually have to release your test results to you, if you show up in person, then you will find out. 


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#5 jamiecasabellameeks

 
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Posted 21 March 2013 - 04:58 PM

Thanks for the replies.  Going to the office in person is a good idea.  I don't know why I'm so "anxious".  I guess maybe to confirm that I am not going crazy...to legitimize WHY I've feeling this way...I'm scared they'll say NOT CELIAC...SEE YA'!  Hoping for answers...


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Jamie :wacko:

#6 ravenwoodglass

 
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Posted 22 March 2013 - 01:11 AM

In addition to asking for the copies of the test results also go ahead and get started on the diet since you have had the blood work and endo. Your body will give you the answer and you may be feeling much better by the time you get to see the doctor.

 

Thanks for the replies.  Going to the office in person is a good idea.  I don't know why I'm so "anxious".  I guess maybe to confirm that I am not going crazy...to legitimize WHY I've feeling this way...I'm scared they'll say NOT CELIAC...SEE YA'!  Hoping for answers...


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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#7 foam

 
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Posted 22 March 2013 - 01:59 AM

You have to understand doctors and all their secretaries have a job because of your illness so they always want to see you again. I'm in the habit of getting copies of all my results anyway, like everyone says if you ask for them they will give them to you (they have to) you can even get CT scans, ultra sound pictures, xrays, MRI's etc on a celiac disease if you ask.


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#8 dilettantesteph

 
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Posted 22 March 2013 - 05:18 AM

That happened to me.  I called the (GI) doctor's office and asked to have the tests sent to the primary care physician.  Believe it or not, that didn't work.  So then, I phoned the facility where the biopsy was done and asked them to do it.  It worked.  The primary care physician gave me the results over the phone.  I wish that I hadn't gone to the GI and spent the $30 copay it took to discuss these results a month later as well.  It was a waste of money.


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#9 jamiecasabellameeks

 
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Posted 22 March 2013 - 05:27 AM

That happened to me.  I called the (GI) doctor's office and asked to have the tests sent to the primary care physician.  Believe it or not, that didn't work.  So then, I phoned the facility where the biopsy was done and asked them to do it.  It worked.  The primary care physician gave me the results over the phone.  I wish that I hadn't gone to the GI and spent the $30 copay it took to discuss these results.  It was a waste of money.

Yea, that's frustrating! So, what did you find out with your results???


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Jamie :wacko:

#10 dilettantesteph

 
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Posted 22 March 2013 - 06:00 AM

It was a follow up biopsy, and it was negative (on my son).  That was nice, but the first time I talked to the pathologist, he didn't seem to know anything about Marsh stages and told me that he needed the first test result to compare with to see if there had been improvement.  There seems to be a little lack of knowledge there.


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#11 cavernio

 
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Posted 22 March 2013 - 06:03 AM

Welcome to your medical system. Take a ticket and wait. Story of my life.


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diagnosed Jan 2012, bloodwork only
June 2012 positive visual of celiac disease from gastroscopy

#12 jamiecasabellameeks

 
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Posted 22 March 2013 - 06:09 AM

It was a follow up biopsy, and it was negative (on my son).  That was nice, but the first time I talked to the pathologist, he didn't seem to know anything about Marsh stages and told me that he needed the first test result to compare with to see if there had been improvement.  There seems to be a little lack of knowledge there.

That's what I'm starting to realize..."lack of knowledge"...I'm noticing it everywhere.  I feel like I have to define "Celiac" to everyone I encounter.  No one seems to understand.  Everyone is skeptical that something as simple as "diet" could affect your body in so many different ways.  Doctors are even skeptical...I do not live in a very gluten-free state to say the least. Mississippi has some "catching up" to do.


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Jamie :wacko:

#13 kareng

 
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Posted 22 March 2013 - 07:14 AM

Just a little advice. Call to ask for copies of your records first. They may be busy and can't just get them for you while you stand there. If the doc hasn't gone over them with you, they may actually be in a different location from the main chart if its not electronic. If they give you trouble over the phone, then go to the office and request them in person.
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#14 jamiecasabellameeks

 
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Posted 22 March 2013 - 07:24 AM

Just a little advice. Call to ask for copies of your records first. They may be busy and can't just get them for you while you stand there. If the doc hasn't gone over them with you, they may actually be in a different location from the main chart if its not electronic. If they give you trouble over the phone, then go to the office and request them in person.

I think I will definitely call first...but just so I'm not made to look "stupid"...They do HAVE to give me a copy, right?? Even if they aren't able to explain the results to me at that time???  I just want to be prepared...


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Jamie :wacko:

#15 kareng

 
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Posted 22 March 2013 - 07:41 AM

I think I will definitely call first...but just so I'm not made to look "stupid"...They do HAVE to give me a copy, right?? Even if they aren't able to explain the results to me at that time??? I just want to be prepared...

You are in the US? Yes. They have to give you a copy of your medical record or the part you want. The only exception to this would be mental health related records that the doctor may determine that it would be detrimental to you having and adoption/ birth records that reveal the parent or adoptive parents identity.

They may ask you to pay for them but many doctors offices don't. I wouldn't mention that the doc hasn't gone over them with you or any of that. Just call and ask to speak to the medical records clerk about getting a copy.
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