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

No relief


V123

Recommended Posts

V123 Apprentice

Hi, 

I had a negative endoscopy as said in last posts. I am on an elimination diet through my dietician, and I haven’t been eating gluten. It’s been three weeks since I started, and I haven’t gotten measurable symptom relief. I’m starting to get worried that gluten isn’t the problem, and going back to square one. My dietician seems to be worried that I haven’t been feeling better. Some things have improved, like constipation and hot flashes, but this could be due to eating healthier. Is it abnormal? I also got blood tests done yesterday, one for lead because my school found lead in our water, one for Lyme to be safe, even though no one thinks it’s Lyme, and one blood test for my blood sugar because it was high on a non fasting test so they had me do a fasting test. Also, i got a rash yesterday on my arm after only eating a smoothie after my tests. I couldn’t take a picture because i was in school, and it’s faded now. 


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



Celiac.com Sponsor (A8-M):



GFinDC Veteran

Hi V123,

Have you been tested for Crohn's Disease?  I saw in another thread you said that you had a fissure.  Fissures don't usually happen with celiac disease but do happen with Crohn's Disease.  Some people with Crohn's Disease do go on a gluten-free diet though as they say it helps their symptoms.

Three weeks is not very long for your body to heal.  A study some time ago found that it can take 18 months or longer for gut healing to happen for celiacs.  But some people heal faster, some slower.  It depends a lot on how good you are at keeping the irritating foods out of your diet IMHO.  In celiac disease, even a small crumb can cause a reaction.  Since it is an immune reaction, it can go on for months.  So you really have to be careful to avoid even traces of gluten that you can't see.  Sharing a peanut butter jar with a gluten eater is a no-no.  So is using a toaster that people put regular gluten bread in.

It can take a while to get the hang of the gluten-free diet and learn how to avoid all the hidden and obvious sources of gluten.  Cross-contamination is an issue we have to be aware of.

By the way, if you click the green circle to top right of your thread title, you can follow the thread for updates.

V123 Apprentice

Thank you,

I will be more careful with contamination. I was tested for crohns and negative 

cyclinglady Grand Master

Three weeks is such a short time to expect dramatic healing from celiac disease. The learning curve for the gluten-free diet is steep!    Don’t forget, damaged areas can be missed in the small intestine because it is the size of a tennis court!   If your symptoms do not improve within six months or so (not perfect, but improved) ask about IBD (Crohn’s) testing.  My niece had her Crohn’s diagnosis caught by a pill camera.  All other tests, including celiac disease (unlike you, both blood tests and biopsies were negative).  

 

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,667
    • 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
      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.    
    • Scott Adams
      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
      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.