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

Newly Diagnosed With Celiac


co09wrx

Recommended Posts

co09wrx Newbie

Hi all,

I joined the club last week after the blood tests. Somehow the diagnosis is not shocking. I have been on Endocort for 3 years with little relief. My original diagnosis was microscopic colitis.

Looking forward to the relief from following the lifelong diet. Wow label checking is worse then the low sodium Menier's diet, looking for salt was easy compared to celiac disease. No longer have Menier's symptoms.

I have a lot to learn. Going to a dietitian on Oct, 1st.

Terry


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



Celiac.com Sponsor (A8-M):



kittty Contributor

Hi Terry!

I was also tentatively diagnosed with Meniere's, but haven't had any symptoms since going gluten free. Did your symptoms also disappear with a gluten free diet, or did they just go away on their own?

It baffles my mind that doctors have no problems diagnosing a relatively rare disease like Meniere's with no problems, but seem to have such a hard time tracking down celiacs.

It also makes me mad that a doctor would prescribe colitis drugs for three years before even suggesting celiacs, which doesn't require medication to treat. Wouldn't it make more sense to try the non-medication solution first? Doctors definitely need more training, and less intervention from drug companies.

co09wrx Newbie

Hi Kitty,

My Menier's went away on it's own in 2002. I am inclined to believe mine was caused from herpes simplex 1. Glad your symptoms are gone. The doctors say Menier's is episodic lets hope yours stays gone also.

At the present time, I am not going to fault the doctors, maybe I didn't complain soon enough about my digestive track not getting better. Now I am just glad the intestines will heal itself as long as I stay on the diet. Of course it may take 2 yrs to heal at my age.

Terry

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,684
    • Most Online (within 30 mins)
      7,748

    Betty Siebert
    Newest Member
    Betty Siebert
    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

    • Scott Adams
      I'd go with a vodka tonic, but that's just me😉
    • Rejoicephd
      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
      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      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
      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.    
×
×
  • 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.