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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Upset Over Endoscopy Results! This Happen To Anyone Else?
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20 posts in this topic

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

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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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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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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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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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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!

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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.

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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.

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

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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.

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