Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Dr Won't Tell Me Test Results?!?
0

10 posts in this topic

My dr order a tTG test on September 28. As of Thursday October 11 it wasn't back yet. I called today to ask if the results were back yet and his receptionist was so rude to me and told me that the results are back and everything is fine and the dr would have called me if there was a problem. But I want to know what the actual number was. I paid $65 for the test so I think I deserve to know what the numbers were. She was so rude to me I don't want to call back. :( Should I just trust that it was negative and everything is fine?

0

Share this post


Link to post
Share on other sites


Ads by Google:

My dr order a tTG test on September 28. As of Thursday October 11 it wasn't back yet. I called today to ask if the results were back yet and his receptionist was so rude to me and told me that the results are back and everything is fine and the dr would have called me if there was a problem. But I want to know what the actual number was. I paid $65 for the test so I think I deserve to know what the numbers were. She was so rude to me I don't want to call back. :( Should I just trust that it was negative and everything is fine?

Is there someone else you can talk to? I always ask my doctor's office for a copy of the results and have not had a problem getting them.

0

Share this post


Link to post
Share on other sites

Call back, ask them to send you a copy of the results. Period. You have legal right to your medical records.

0

Share this post


Link to post
Share on other sites

You might also try email, if you have their website you could use the 'contact' option perhaps, or if you have an email address for them, use that if you don't want to call, asking for the specific test results. Then give it a few hours to see if you get a response. Then email a 2nd request, or call.

0

Share this post


Link to post
Share on other sites

Your doctor needs to know about his receptionists rudeness. If you are in the US you have a legal right to copies of all tests. Call back and ask to speak to a nurse and tell the nurse you will be coming in to pick up the results or ask the nurse to make sure they are mailed to you. Do you have an appointment scheduled for follow-up? If you do then talk to your doctor about this incident and if you don't have a follow-up scheduled you may want to make one.

0

Share this post


Link to post
Share on other sites




Call back, ask them to send you a copy of the results. Period. You have legal right to your medical records.

Actually, this is not so clear in Ontario. The doctor who ordered the test owns the results. I have never had a problem getting actual specifics, but it isn't clear that I have a legal right.

0

Share this post


Link to post
Share on other sites

My husband picked up a copy of the results and it is definitely negative. A positive is greater than 20 and mine was 6. I am actually disappointed. I have all of the symptoms of celiac so I am really shocked. I have a biopsy scheduled but they want to do a colonoscopy at the same time and I am too stressed over that so I am considering cancelling the whole thing. I am feeling very disheartened right now. My husband says just try going gluten-free anyways but I don't want to bother without a real diagnosis. I know myself and there is not way I'll be able stick to it if I know I don't really need to be. Not to mention not having a diagnosis to tell family when they ask why I am not eating gluten.

0

Share this post


Link to post
Share on other sites

Sometimes there are false negatives. And sometimes folks have non-celiac gluten intolerance. The only diagnosis for that is response to the gluten-free diet. I think it wouldn't hurt you to try going STRICTLY gluten-free for a couple of months. If your symptoms improve, you will know you either have celiac or intolerance.

And if you have trouble with your family, send them here to read about it, or get them some info from other reputable sources. BOTH of these conditions are very real, and it would be a shame for you to remain sick and possibly get even worse just because your family didn't believe you.

0

Share this post


Link to post
Share on other sites

I know you have been through a tough time just getting this doctor to test tTG-IgA and don't wish to make you jump through more hoops. I just want to make sure you understand that one tTG IgA test is not enough to rule out Celiac Disease or NCGI if you have symptoms.

As I see it, you have four choices:

Have your doctor order full celiac blood work - without a Total Serum IgA, the tTG IgA doesn't give a clear picture. The full panel will give you a much better picture.

Have the endoscopy and make sure the doctor takes at least 6 biopsies of the small intestine - the changes in early celiac cannot be detected without these biopsies. I understand the apprehension of going in for a "double-ender" - I was not thrilled with the idea, but I can tell you it is not a difficult procedure and having them both at the same time rules out many causes of your symptoms. I had one double and I do not remember anything about the colonoscopy and had absolutely no memory of anyone even lifting my gown.

Skip any further testing and remove ALL gluten for at least three months to monitor for improvement. If your symptoms improve significantly, perhaps your doctor will diagnose NCGI and you will have an official diagnosis to report to your family.

Do nothing and wait for symptoms to potentially get much worse. Mine did and I'd hate for anyone to get worse when they might already be on the right track to improving their health.

I do hope you are able to find some answers.

1

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
      104,636
    • Total Posts
      921,532
  • Topics

  • Posts

    • Oh, and as I mentioned in my own post on pain, xanax. I swear. I tried it just to deal with the occasional panic I had at weird scary symptoms and clueless doctors. I am not a fan of long term use. But I recently found that .25 mg seems to aid with the neuropathic pain. It does not go away, but it helps. 
    • It does sound like a Glutening and you are just a few months into the diet.  It might help if you read our Newbie 101 thread under the "Coping" section.   Here is some information about rice milk: https://www.verywell.com/is-rice-dream-gluten-free-562354 Many, many celiacs are often lactose intolerant temorarily or permanently if you are naturally genetically inclined.  When I am glutened, I lose the ability to digest lactose for a while.   Salad?  Great but it can be rough on a sore gut!  Think soups, stews, easy-to-digest foods that you prepare yourself until you feel better.  Did your folks give you salad after a bout of flu?  Or did you stick with jello and broth?  I am intolerant still after three years to garlic and onions (the lactose resolved, thankfully).  You have a leaky gut (Google zonulin and Dr. Fasano who is a leading celiac researcher to verify that this is true) and that means you can become intolerant to anything (hopefully, just temporarily).   If you are 100% sure that you have had no access to gluten....did you eat out lately?.....then see your doctor.  Remember, celiac disease symptoms can change.  And here is the biggie.....it can take weeks, months or years to heal from celiac disease.  Two months in is nothing, really.  Why?  It takes time to figure out the diet and time for antibodies to come down.  celiac disease is an autoimmune disorder triggerEd by gluten.  once triggered it can go on and on damaging your gut especially with repeated glutenings (accidental or through cross contamination). I hope you feel better soon!  
    • I concur! I literally feel your pain as well. Like, at the moment, lol. Did you have an endo to see inflammation or damage? I am close to begging my GI for carafate or something to coat and protect. How about testing your antibodies to see if they are still rising? I read somewhere here rice milk may not be a good option.  Folks here have also suggested to me to stick with whole foods. Limit processed. Especially stuff that is not certified gluten-free, like chex. I think small amounts of gluten are in processed foids and can add up. I too reacted to lettuce the other day like I was ingesting glass. My sibling  had a food sensitivity panel done and it came back positive for a few things he had been eating a lot of. He can now eat them, but had to cut them out of his diet. Lettuce is probably on mine.  I have been drinking carrot and pomegranate juice,  dandelion root tea with hiney, aloe water, lots of squash, fish. Mild, no garlic, no onions or hot sauce. No coffee. It sucks.  Inflammation can tick off other organs, you mention a "Pain below". Not exactly sure which side, but certainly call your doc Monday. Sooner if the pain increases.
    • You should see a GI specialist before you go gluten free.  They should do a upper endoscopy to check for celiac damage.  Colonoscopy won't show anything related to celiac.  Also no you should not feel worse on gluten free, you should feel better.
    • So ok, I get the pain/bloating thing, but it still feels so crazy. But my god, I look 6 months preggers after dinner and 4 months the rest of the time. How long will this last?! I have not gained any weight but have to hide me belly now. I can hardly breath! Omg, that does take me back to pregnancy.  I had "acute marked focal duodenditis" a few weeks ago and an elevated DGP. the pain sometimes makes me seriously think I must be bleeding somewhere. It is actually worse then 3 weeks ago. Although many of the other glutening symptoms are finally vanishing. Even my mid and lower back is tender to touch. Sometimes it burns, aches or like someone is stabbing me in my side. My ribs hurt and everything is tender.  I am on protonix and fish oil. I have a prn for xanax which helps the pain (off market use for muscle relaxant).    I am fair skinned and notice a red under-the-skin discolored rash that comes and goes on my upper stomach. Sometimes it travels down one side. Not itchy. Almost like I can actually see the inflammation under my skin.  1) when will I stop looking knocked up?  2) Any other fair-skinned folks notice a purpleish-red rash on your bellies? It mostly goes away and comes back, which I tske to be a good sign. 
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,639
    • Most Online
      3,093

    Newest Member
    NickyW_UK
    Joined