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

Want Formal Diagnosis

SaraKOB

Recommended Posts

SaraKOB Newbie
SaraKOB
Posted

Hi All,

I'm so glad to be here. I've now been gluten free for 9 months and have never felt better. But I want a real diagnosis. Before I brave yet another pointless, expensive Dr. appointment I want to be ready. CAN SOMEONE HELP ME THROUGH THIS?

I'm sure my story is similar to many others. I've been battling with almost all symptons of celiac for over 7 years. I've been to several doctors with IBS diagnosis and others. I also realized later that the blood tests did not include the entire celiac panel needed and was done while I was on a gluten free diet - so the result was normal.

I live in NYC and I'm going to a referred GI doctor and telling him the tests I want. Before going, I'm planning on eating gluten again for 3 months so I can get an accurate diagnosis. However, I read that since I've been gluten free it still could be a false negative.

Anyone have any advice???

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

Celiac.com Sponsor (A8-M):


Takala Enthusiast
Takala
Posted

You didn't articulate the reason you thought you needed the official diagnosis.

SaraKOB Newbie
SaraKOB
Posted
  • Author
You didn't articulate the reason you thought you needed the official diagnosis.

I want to know if it's gluten intolerance or if it's actual celiac disease. I think it's important for when I have my own kids or for my family who are suffering from stomach issues. I've tried for a long time to be okay with going gluten free just because it makes me feel better, but if a serious, hereditary disease is behind it, I'd really like to know.

Gemini Experienced
Gemini
Posted
I want to know if it's gluten intolerance or if it's actual celiac disease. I think it's important for when I have my own kids or for my family who are suffering from stomach issues. I've tried for a long time to be okay with going gluten free just because it makes me feel better, but if a serious, hereditary disease is behind it, I'd really like to know.

You could always have the gene testing done on yourself to see if you carry the main Celiac gene. It will not tell you if you have Celiac but if you carry the gene, you will have the genetic pre-disposition for it. Add to that your symptoms and dietary response and that's as good a diagnosis as what the medical profession currently offers.....probably better. Your children, or future children, could also be tested if you turn up positive for it. This is probably where the medical profession should actually start their diagnosis but, as they don't make any money off of the blood work, they tend to never order the test. You do not need to be eating gluten for the genetic testing to be accurate.

SaraKOB Newbie
SaraKOB
Posted
  • Author
You could always have the gene testing done on yourself to see if you carry the main Celiac gene. It will not tell you if you have Celiac but if you carry the gene, you will have the genetic pre-disposition for it. Add to that your symptoms and dietary response and that's as good a diagnosis as what the medical profession currently offers.....probably better. Your children, or future children, could also be tested if you turn up positive for it. This is probably where the medical profession should actually start their diagnosis but, as they don't make any money off of the blood work, they tend to never order the test. You do not need to be eating gluten for the genetic testing to be accurate.

Thank you! That is very helpful. Wish me luck with actually getting a GI doctor to do this on Thursday. :) I'm so jaded with doctors by now. But I think that is a very good idea. I'll let you know how it goes.

ravenwoodglass Mentor
ravenwoodglass
Posted

You need to keep in mind also that most doctors only test for DQ2 and 8 in the US. There are other genes that are considered to be related to developing celiac in other countries. There is still a chance of a false negative even with a 3 month challenge but your bodies response to it may allow your doctors to still recognize that you are 'celiac'. Do keep a record of your symtoms including all systems, gut brain joints muscles etc. and let your doctor know if the symptoms get severe.

tom Contributor
tom
Posted
. ... However, I read that since I've been gluten free it still could be a false negative.

One big part of the problem w/ celiac disease is that even a celiac who's NEVER been gluten-free has a good chance of a false negative on the blood tests.

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

Celiac.com Sponsor (A8-M):


Archived

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

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


  • Member Statistics

    • Total Members
      131,666
    • Most Online (within 30 mins)
      7,748
    bailey1023
    Newest Member
    bailey1023
    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

    • 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
    • Xravith
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Xravith · Posted

      Thank you for the advice. I’ve actually never checked for nutritional deficiencies, but for as long as I can remember, I’ve always taken vitamin and mineral supplements — otherwise my symptoms get worse. This week I stopped eating gluten to confirm whether my symptoms are really caused by it. Starting next week, I’ll reintroduce gluten — it’s sad to go back to how I was before — but at least I’ll be able to take the necessary tests properly. I think the diagnostic process will be long, but at least I’m happy that I finally decided to address this doubt I’ve had for years.
×
×
  • 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.