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

Don't Know What To Do

strum

Recommended Posts

strum Rookie
strum
Posted

I go back for my follow up with my GI doc tomorrow. My blood tests were negative and my biopsy was suggestive of Celiac's but not positive. However, I have been inadvertently eating a very low gluten diet for three months by eating low carb. No bread, pasta, crackers, etc. I know the normal answer would be do a gluten challenge but I tried and it makes me so sick I can't work. I can't miss six weeks of work. And I can't stand the thought of just being that sick. So, not sure what to do or say tomorrow. I welcome any suggestions.

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

Celiac.com Sponsor (A8-M):


BlessedMommy Rising Star
BlessedMommy
Posted

What did they see on the biopsy? Seems to me that if they saw damage, then it's celiac.

 

Because being celiac is kind of like being pregnant, either you are or you aren't. You can't be a "little celiac." I'm not sure why they would say it's "suggestive of celiac" but not positive?

SMRI Collaborator
SMRI
Posted

My biopsy results say that it's likely celiac but it also lists some other conditions that it could be like bacterial overgrowth so it isn't always cut and dried. Now, my blood work and genetic test came back positive to support the biopsy findings.

Is having the official diagnosis needed for something at work or elsewhere?

BlessedMommy Rising Star
BlessedMommy
Posted

Oh okay, that makes sense! So apparently there are other things that can affect the gut?

strum Rookie
strum
Posted
  • Author

I guess that's what it comes down to, do I need the diagnosis. Personally, I would very much like to know for sure. I think compliance and understanding would be much easier with a definitive diagnosis. I'm not sure how it might effect things down the road as far as insurance or work, I just don't know.

sweetsailing Apprentice
sweetsailing
Posted

Given the uncertainess with your tests and eating very little gluten at the time of testing.  I would make sure that you get genetic testing done.  While it can't conclude that you absolutely have celiac.  It can rule in or out the possibility and provide one more piece of the puzzle that would help support a diagnosis.

LauraTX Rising Star
LauraTX
Posted

Have you had the genetic test done? That plus the biopsy may give some more clues

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

Celiac.com Sponsor (A8-M):


strum Rookie
strum
Posted
  • Author

So, my doctor basically said he doesn't know what's wrong with me but if gluten makes me sick and not eating gluten makes me better he would like to try for months with a gluten free diet and see how I do. I'm not thrilled with not knowing, but I am happy at not doing a gluten challenge.

cyclinglady Grand Master
cyclinglady
Posted

I was formally diagnosed last year, but my husband (who has been gluten-free for 13 years per the advice of his doctor), was not. It was hard for him to comply with the diet in the beginning, but after a while he realized how much better he felt. He gets sick if he accidentally gets glutened just like me!

So, it is possible to go without a formal diagnosis, but he would be the first one to tell you that I have received a lot more support from family, friends and medical. I have an Aunt and cousin who both have given up gluten after inconclusive tests. They do not want to do the challenge now that they have been gluten free for over a year.

Archived

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

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


  • Member Statistics

    • Total Members
      131,685
    • Most Online (within 30 mins)
      7,748
    tdouglas2901
    Newest Member
    tdouglas2901
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

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



  • Who's Online (See full list)

    • There are no registered users currently online
  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

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

      By Scott Adams · Posted

      I'd go with a vodka tonic, but that's just me😉
    • 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.    
×
×
  • 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.