• 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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-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
      107,332
    • Total Posts
      935,538
  • Member Statistics

    • Total Members
      64,994
    • Most Online
      3,093

    Newest Member
    Daisy Charlize
    Joined
  • Popular Now

  • Topics

  • Posts

    • Thank you all for replying. It's good to know that it's not just me. It gives me (and hopefully the other noobs) some comfort to know that it's normal for the ups and downs to happen. I keep trying to tell myself to be patient with it but it's so hard to be able to look down the road further than the moment when you're in the middle of it. I forgot to mention, yeah, I have had a full vitamin, mineral, and general blood panel done and everything came back normal. Regardless I still supplement with a good (and expensive) multivitamin plus sublingual D3 and B12 every day, and naturally I scrutinize the labels on those and everything else for anything even non-gluten that sounds fishy, including the possibility of CC at the factory. I guess it will just take longer to stabilize.
    • Thank you for your reply.  I did make sure to keep eating gluten before getting tested. I'm still unsure whether or not I should ask my doctor to run the rest of the tests in the celiac panel.  
    • LOL, re: trousers vs. pants.   Here in the US, trousers are a specific kind of pants/slacks, with a looser fit and often with pleats in the front.   I also read that Vit D helps digestion;  can't recall the links, but likely within Gundry's writings about lectin.   My Dr. just told me to resume 2000 IU per day, and I do think it's made a slight difference. Have also read that bone broth is helpful, its gelatinous nature supposedly coats the stomach.   I know bone broth has not been formally studied much, but again, probably can't hurt and might help.
    • I'd try the gluten free diet for a few months to see if that helps at all. Can't hurt. If it doesn't help I'd try a low FODMAP meat and veggies diet.
    • A good amount of the neurological effects from celiac are also related to nutrient deficiencies caused by malabsorbtion from damaged intestines and the fact that most gluten-free foods are not fortified and your net eating many grains. You sound good about the CC and everything and seem to be taking percations goods, I still use freezer paper for a clean safe work surface even in my gluten free home lol. Anyway top things to look for and consider are magnesium and B vitamin deficiencies . I take my in a drink to avoid pills and the sublingual forms are more easily absorbed by the body. I normally suggest 2 brand or forms of magnesium and you need to find the one that works for you there. They are Natural Vitality Calm, a magnesium citrate in a powder, you add it to a warm drink let it fizz and drink it. Magnesium citrate can be a bit harsh on some peoples guts, I suggest you start off with 1/4 tsp and work your way up to the full dose over a week, if you get D then your taking too much and need to back down or the citrate version might be too rough for you. In which case I suggest Doctors Best, bit more off tasting and mixes best with a juice but with the powdered form of it you do not have to worry about digestion issues, I just found the citrate to seem to help with my nerve issues more. B Vitamins, I take Liquid Health Stress & Energy and the Neurological Support, I take 1 tbsp of each 2-3 times a day before meals. Really helps with everything and being in liquid forms I just add to tea and drink it. There are many other vitamins to look into and we each have ones we have issues with more then others, getting tested might help, NOTE magnesium and B vitamins sometimes show normal but you will still find you need supplementation...bit of a odd thing I found. Yeah the neurological effects are  huge thing with me as my issues with this disease cause my immune system to attack my nervous system and brain....accumulated brain and nerve damage over the years. Had a whole mental trauma issues with them, my gastro issues back then were mostly just constipation. NOW days I get the Vomiting, D, gas, bloat, and then constipation for a week along with neurological issues which NOW if I get exposed to eating straight gluten (happened twice in 3 years to this extent) I loose motor control and collapse unable to move, normally while vomiting violently to the point of blood coming up (this was what happened last June 2016 after eating out).  
  • Upcoming Events