Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Upset Over Endoscopy Results! This Happen To Anyone Else?

jamiecasabellameeks

Recommended Posts

jamiecasabellameeks Apprentice
jamiecasabellameeks
Posted

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! :(

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


psawyer Proficient
psawyer
Posted

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.

nvsmom Community Regular
nvsmom
Posted

(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.

Takala Enthusiast
Takala
Posted

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. 

jamiecasabellameeks Apprentice
jamiecasabellameeks
Posted
  • Author

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...

ravenwoodglass Mentor
ravenwoodglass
Posted

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...

foam Apprentice
foam
Posted

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


dilettantesteph Collaborator
dilettantesteph
Posted

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.

jamiecasabellameeks Apprentice
jamiecasabellameeks
Posted
  • Author

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???

dilettantesteph Collaborator
dilettantesteph
Posted

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.

cavernio Enthusiast
cavernio
Posted

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

jamiecasabellameeks Apprentice
jamiecasabellameeks
Posted
  • Author

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.

kareng Grand Master
kareng
Posted

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.

jamiecasabellameeks Apprentice
jamiecasabellameeks
Posted
  • Author

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...

kareng Grand Master
kareng
Posted

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.

jamiecasabellameeks Apprentice
jamiecasabellameeks
Posted
  • Author

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.

WISH ME LUCK!!!!!!!!!!!!!!  I'm going to call this afternoon!

kareng Grand Master
kareng
Posted

WISH ME LUCK!!!!!!!!!!!!!!  I'm going to call this afternoon!

If they give you trouble, pm ( personal message me) and I can give you some more specific help.

jamiecasabellameeks Apprentice
jamiecasabellameeks
Posted
  • Author

I WILL! THANK YOU FOR THE HELP!

If they give you trouble, pm ( personal message me) and I can give you some more specific help.

Cara in Boston Enthusiast
Cara in Boston
Posted

In the meantime, start the diet.  No need to wait.

dilettantesteph Collaborator
dilettantesteph
Posted

I checked into this.  While they are required to give you copies of your records, there isn't a time limit and you might end up waiting a month anyway.  It might work better to work around the people who don't want to give you the results by asking the facility directly.  Also, if you ask them to be sent to your primary care doctor (if that one is cooperative), rather than giving them to you directly, they may be more compliant.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. lizzie42
      - lizzie42 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Son's legs shaking

      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin. He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her...
    2. trents
      - trents replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified...
    3. trents
      - trents replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you...
    4. Paulaannefthimiou
      - Paulaannefthimiou posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

      Are Bobresmill gluten free oats ok for sensitive celiacs?
    5. jenniber
      - jenniber replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks! i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me b...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,849
    • Most Online (within 30 mins)
      7,748
    Jadelucia
    Newest Member
    Jadelucia
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin.  He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her kitchen but I thought it would be ok.  Next day and for a few after his behavior is awful. Hitting, rude, disrespectful. Mainly he kept saying his legs were shaking. Is this a gluten exposure symptom that anyone else gets? Also the bad behavior? 
    • trents
      Bob red mill gluten free oats

      By trents · Posted

      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      Disaccharide deficient, confusing biopsy results, no blood test

      By trents · Posted

      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Bob red mill gluten free oats

      By Paulaannefthimiou · Posted

      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      Disaccharide deficient, confusing biopsy results, no blood test

      By jenniber · Posted

      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.