• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      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?
0

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! :(

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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.

1

Share this post


Link to post
Share on other sites

(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.

0

Share this post


Link to post
Share on other sites

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. 

0

Share this post


Link to post
Share on other sites

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...

0

Share this post


Link to post
Share on other sites
Ads by Google:


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...

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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???

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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...

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      106,456
    • Total Posts
      930,642
  • Member Statistics

    • Total Members
      63,881
    • Most Online
      3,093

    Newest Member
    sandtcurrent
    Joined
  • Popular Now

  • Topics

  • Posts

    • I was wondering if anyone could assist me in sore throat remedies. Cough drops? Teas? I am gargling with salt water but wanted something else. Anything gluten free obviously. Thanks. 
    • Over the last 1.5 years I have had a rash that will not go away.  The rash is around the neck, hairline on the front of my head, the back of my scalp, elbows, knees, shins, parts of my ankle, and buttock.  The rash seem to get very itchy during the evening.  I did have a skin biopsy completed and blood tests last year and they came back negative.   I was on oral steroids when I had the test would this possible skew the results? Also its seems the body parts that are exposed to the sun seem to have the rash. Some Pictures
      http://s1084.photobucket.com/user/Richard_Brandys/library/
    • Yes the first has wheat gluten in the ingredients, the second via the wheat flour. Here in the UK manufacturers HAVE to highlight gluten sources. Check the ingredients and if WHEAT, BARLEY, or RYE are mentioned *usually highlighted, italicised or underlined, then you will know there's gluten. Most of iceland's processed foods will probably be gluten filled to be honest. Any breadcrumbed or battered foods for instance.  Ps, you and me both have another disease, the british one of apologising  You don't need to, you're very welcome here and all of your questions are valid and understandable. It's going to get better  
    • Hi, I am deeply sorry for posting on here again. As I am scheduled for an Endoscopy on the 9th May, I wanted to make sure that my gluten intake is being kept the same. I was wondering if the ingredients to these products contain gluten even though dextrose is in one of them? http://groceries.iceland.co.uk/iceland-32-breaded-chicken-nuggets-448g/p/52275   Chicken Breast Fillet (60%), Water, Wheat Flour, Breadcrumbs (Wheat Flour, Dextrose, Salt, Yeast), Rapeseed Oil, Salt, Wheat Gluten, Sugar, Yeast Extract, Garlic Powder, Onion Powder, White Pepper, Dried Sage. http://groceries.iceland.co.uk/iceland-10-breaded-chicken-burgers-550g/p/52276 Chicken Breast Fillet (60%), Water, Wheat Flour, Breadcrumbs (Wheat Flour, Dextrose, Salt, Yeast), Rapeseed Oil, Salt, Wheat Gluten, Sugar, Yeast Extract, Garlic Powder, Onion Powder, White Pepper, Dried Sage. Thank you for all your help so far,
    • JMG got it down pretty much, the painful and gluten effects from eating it should clear up in a month, damage symptoms you might notice some differences as early as 2-4months but most do not noticed major improvements til about 6 months to a year. I have been gluten-free for over 3 years all my villi have healed according to the doctor on my last scope. It is very important to not cheat and avoid any kind of CC as it can set you back weeks or months. I would suggest a whole foods only diet for the first month or two, no dairy, simple stews, soups, etc. make for easy to digest and simple meals. Check out the 101 thread for some good information. PS a new combo crockpot, steamer, rice cooker combo and liners for a crock pot will be a life saver for making simple meals and easy clean ups. Quick cook microwave ware will also be handy making sure you have gluten-free cooked meals if you can not get new cookware immediately. I normally suggest cleaning out the entire house, scrubbing down knobs, handles, on the drawers, sink, fridge, cubbards etc.  throw out condiment jars, checking ingredients on everything in the house including your hygiene and makeup. Putting in drawer organizers for new utensils, throwing out scratched glass, teflon, plastic, and steel cookware. Throwing out any Tupperware, and cutting boards, some utensils that can not be cleaned well. Some times you can save cast iron and stainless steel cook ware if you can run it in your ovens cleaning cycle over 600F. Gluten is a protein like blood if you can not clean a item where a CSI team will not find it give it up, it is not a germ that can be killed with disinfectant.  I use freezer paper for clean prep surfaces, also makes clean up a breeze, I tend to use gloves alot also when fixing foods,
  • Upcoming Events