• 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

Recommended Posts

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! :(

Share this post


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


psawyer    687

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.

  • Upvote 1

Share this post


Link to post
Share on other sites
nvsmom    332

(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.

Share this post


Link to post
Share on other sites
Takala    413

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. 

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...

Share this post


Link to post
Share on other sites
Ads by Google:


ravenwoodglass    1,218

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...

Share this post


Link to post
Share on other sites
foam    16

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.

Share this post


Link to post
Share on other sites


Ads by Google:


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.

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???

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.

Share this post


Link to post
Share on other sites


Ads by Google:


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.

Share this post


Link to post
Share on other sites
kareng    1,992

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.

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...

Share this post


Link to post
Share on other sites
kareng    1,992

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.

Share this post


Link to post
Share on other sites


Ads by Google:


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!

Share this post


Link to post
Share on other sites
kareng    1,992

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.

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.

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
      107,896
    • Total Posts
      938,534
  • Member Statistics

    • Total Members
      65,804
    • Most Online
      3,093

    Newest Member
    Junimoon
    Joined
  • Popular Now

  • Topics

  • Posts

    • Before ordering the endoscopy, you would think they would order the complete celiac panel.  Not all celiacs (like me) ever get a positive TTG (I do test positive to the DGP, but negative to the EMA and TTG).  You would think that the additional blood tests would be way more cost effective than going directly to endoscopy.  The endoscopy usually is still considered necessary for a celiac diagnosis, but there does not seem to be strong evidence that she has celiac disease other than a family history.   Some celiacs are seronegative negative, but your daughter was only negative on just one of the celiac tests.  So, she MIGHT be seronegative.  More investigation is needed.  She is NOT IgA deficient, at least for celiac testing (for celiac disease this test is just a control test).   The DGP test seems to be better for small children.   I do not have the complete health history of your child, but I would seek a second opinion before going to an endoscopy at this time with only one test result.  Try to find a celiac-savvy GI -- one who follows what the American GI Association  recommendations for celiac disease and what the Mayo Clinic or a large celiac research center recommends for testing protocol. https://www.mayomedicallaboratories.com/it-mmfiles/Celiac_Disease_Diagnostic_Testing_Algorithm.pdf https://gi.org/guideline/diagnosis-and-management-of-celiac-disease/  
    •   Hello linzk8! I would suggest you to go with natural foods as you are allergic to latex. One of my friends had the same problem. She also had latex allergic. She used Indian nuts to lose weight purchased from the official site of Nuez Dela India and achieved a success. You can also check the same. Eating at the right time is also important. Avoid eating very late at night. It's fine to eat in between meals, but limit your proportions. Never starve yourself! Hope this could help you!
    • My family visited Peru (my 13 year old has celiac) last Christmas, and we found Peru rather gluten free friendly. Peru is the land of corn and potatoes, and they have lots of grill meats.   Their cooking ingredients tend to be naturally gluten-free.   We did the 4 day Inca trail hike to Machu Picchu, and our chef did a great job making gluten-free meals for my daughter.  
    • Most physicians follow the joint commission’s guidelines on prescribing HTN medications which usually begin with a diuretic and calcium channel blocker (the amlodipine) - see below. Is it possible that your bp was still not controlled on the CCB (amlodipine)? So the ARB was added? Again, I’d just like to say that just bc a drug does have certain adverse effects does not mean you will have them, but I understand if you would not even want to take the chance, given a previous history of celiac disease. http://www.aafp.org/afp/2014/1001/p503.html “In the general nonblack population, including those with diabetes, initial anti-hypertensive treatment should include a thiazide diuretic, calcium channel blocker, angiotensin-converting enzyme (ACE) inhibitor, or angiotensin receptor blocker (ARB). In the general black population, including those with diabetes, initial treatment should include a thiazide diuretic or calcium channel blocker. If the target blood pressure is not reached within one month after initiating therapy, the dosage of the initial medication should be increased or a second medication should be added (thiazide diuretic, calcium channel blocker, ACE inhibitor, or ARB; do not combine an ACE inhibitor with an ARB). Blood pressure should be monitored and the treatment regimen adjusted until the target blood pressure is reached. A third drug should be added if necessary; however, if the target blood pressure cannot be achieved using only the drug classes listed above, antihypertensive drugs from other classes can be used (e.g., beta blockers, aldosterone antagonists). Referral to a physician with expertise in treating hypertension may be necessary for patients who do not reach the target blood pressure using these strategies.” Drugs for BP in different classes work by different mechanisms. It may be worth it to print out those huge, long drug information sheets and go over them with a fine toothed comb. As for CoQ10, have you checked for coupons online? Can your doctor write you an Rx and get your insurance to pay? They might say it’s on OTC and you have to pay out of pocket, but it may be worth it to find a way around that - would a prior authorization do the trick? I don’t know, just bringing up the questions. In the report you cited, these concluding words were to me, chilling:
      “Therefore, we suggest the possibility of a class effect.” Losartan, olmeseartan - doesn’t matter. And I'll say it again, there must be a way to disseminate this information more widely as I had no idea about this adverse effect, and never heard any docs speaking about it either. It really warrants wider sharing. Finally, one person who is often an overlooked resource is your pharmacist. They have just tons of knowledge and should be able to talk to you in some depth if asked, in an articulate, easy to understand way. They may even be able to do some digging and research for you. Plumbago
    • Plumbago et al, Thanks for letting me know  about the "artan" drugs being ARBs. I think Cyclinglady was right the Losartan research is not free and thus not public. I saw the link with no abstract but wanted to read it to confirm as you noted in your ETA that it was another "Artan" drug Losartan causing the problem. I believe it is. I found a great (after more digging) review of all the "artans"/ARBs or most of them about whether they can contribute to sprue symptom's in addition to Benicar. here on wiley as studied by the alimentary pharmacology and therapeutic journal (AP&T) for short. http://onlinelibrary.wiley.com/doi/10.1111/apt.14176/full I wish I knew how to post the able alone it is very informative.  Please scroll over the table to the end of it since it even tells how long to expect before your sprue symptom's/conditions improve IF the "artan" drug is causing your symptom's which I find the most helpful thing about the table.  They also note histological feature (degree of villi blunting) to expect on biopsy. They note Losartan can cause "total atrophy of duodenal villi" by their reporting. I also recently had an issue with my potassium levels so I feel sure it is the Losartan. I remember reading a study about how losartan was better at the "chronic cough" I had developed using Lisinopril so I changed to Losartan a few years ago . . . now I find I could of been making my GI symptom's worse. But to answer  your other question since I began taking Folic Acid a few months ago my BP numbers went down to a healthy level of 120/80 or less sometimes . . . but with medicine. I had already been thinking I wanted to try get off the BP medicine (for good) so this is more motivation. C0q10 worked well but it is too expensive for me to take all the time! I called my doctor to have them put me back on Amlodipine/Norvasc and I can't remember why I changed off that medicine to begin with now.  I do remember needing two medicine's back then to control my BP so maybe we stopped the Norvasc instead of the Linsinopril. But now that they have put me back on Norvasc I hope my potassium levels will correct themselves. I just don't feel safe anymore taking Losartan after learning it could be making my GI symptom's worse or causing the to be unreliable. I first thought my touch of D. was from an antibiotic round but when kefir didn't get me back on track I suspected something else when my Vitamin D levels showed up low too again! Thanks everybody for ya'lls great suggestions and good research on my behalf. I also recommend this verywell article if you are still having GI problems and you suspect an "artan" like ARBs BP medicine and looking for a medicine that might have less severe  or more manageable symptom's for your lifestyle because it comprehensively list's the medicine's by drug types. https://www.verywell.com/hypertension-drugs-1745989 no medicine is without a side effect as (I) am learning but I never thought sprue would be one for my BP medicine and why I prefer Vitamins when I can find out which one too take. Now that I have the Norvasc approved as a replacement for the Losartan I might see if my BP goes up again if I stop my medicine all together as I was hoping the Folic Acid might help me with it (without medicine) and it explains why I was low in Folic Acid to begin with again. posterboy,    
  • Upcoming Events