Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Dr Won't Tell Me Test Results?!?

smpalesh

Recommended Posts

smpalesh Explorer
smpalesh
Posted

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?

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


KikiB Explorer
KikiB
Posted

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.

tarnalberry Community Regular
tarnalberry
Posted

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

ciamarie Rookie
ciamarie
Posted

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.

ravenwoodglass Mentor
ravenwoodglass
Posted

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.

psawyer Proficient
psawyer
Posted

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.

smpalesh Explorer
smpalesh
Posted
  • Author

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


bartfull Rising Star
bartfull
Posted

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.

mushroom Proficient
mushroom
Posted

You can print out the page at this weblink:

Open Original Shared Link

This is where Dr. Alessio Fasano, the "God" of celiac, discusses non-celiac gluten sensitivity. :)

GottaSki Mentor
GottaSki
Posted

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.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,678
    • Most Online (within 30 mins)
      7,748
    GGGrandpa
    Newest Member
    GGGrandpa
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Rejoicephd
      Draft gluten-free ciders… can they be trusted ?

      By Rejoicephd · Posted

      That and my nutritionist also said that drinking cider is one of the worst drink choices for me, given that I have candida overgrowth.  She said the combination of the alcohol and sugar would be very likely to worsen my candida problem.  She suggested that if I drink, I go for clear vodka, either neat or with a splash of cranberry.   So in summary, I am giving ciders a rest.  Whether it's a gluten risk or sugars and yeast overgrowth, its just not worth it.
    • Inkie
      Tea Bags and Gluten

      By Inkie · Posted

      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      Tea Bags and Gluten

      By Scott Adams · Posted

      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • Scott Adams
      Medication

      By Scott Adams · Posted

      Welcome to the community! Generally, for a gluten challenge before celiac disease blood tests, Tylenol (acetaminophen) is considered safe and should not interfere with your antibody results. The medications you typically need to avoid are those like ibuprofen (Advil, Motrin) or naproxen (Aleve) that can cause intestinal irritation, which could potentially complicate the interpretation of an endoscopy if you were to have one. However, it is absolutely crucial that you confirm this with either your gastroenterologist or your surgeon before your procedure. They know the specifics of your case and can give you the definitive green light, ensuring your surgery is comfortable and your celiac testing remains accurate. Best of luck with your surgery tomorrow
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.