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

Does It Get Worse Before It Gets Better?

rantipoles

Recommended Posts

rantipoles Newbie
rantipoles
Posted

I had a blood test come back positive for celiac, though the endoscopy came back negative. I gave up gluten a few weeks ago and am temporarily giving up a lot of other stuff elimination diet style (no dairy, soy, grains, etc) just to see if anything else is causing irritation. I've been cooking everything at home, buying whole food ingredients, taking probiotics, cleaning up in the kitchen better, and watching labels like a hawk. The problem is that my stomach is feeling worse than it did before I gave up gluten. I seem to cramp up after nearly every single meal and am waking up in the middle of the night with stomach pain. 

 

I know everyone's experience of giving up gluten is different, but I'm feeling a little discouraged after reading so many stories of people who said their symptoms cleared up almost immediately. Is it possible for things to get worse before they get better on a gluten-free diet? Did any of you have to wait a long time before feeling stomach pain relief?

 

 

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

It sounds like you are doing a great job!  But, you're wrong about feeling better fast.  It took me about 7 weeks to resolve my intestinal issues.  I was asymptomatic prior to my blood test, but developed some intestinal problems prior to my endoscopy resulting from eating a loaf of bread a day (my results showed moderate to severe damage).  Anyway, others on this forum have take one to two years to feel better.  So, be patient!  You'll feel better soon!   :)

eerickso Newbie
eerickso
Posted

I've been feeling the same way. My brain fog seemed to lift pretty quickly but I've definitely had some tough days since going gluten-free over the last couple of weeks. I've now added dairy to my banned list and am starting to see a bit of improvement but it is all very gradual. I'm still getting cramping and still wake up in the middle of the night with pain. The main difference is that I'm not cramping up every 15 minutes between 6 AM and noon; now it's just a couple of times.

 

Hope you (and I!) start feeling better soon!

nvsmom Community Regular
nvsmom
Posted

I found some symptoms improved fairly quickly and others took a long long time. Give it more time - a couple of weeks gluten-free really is just a drop in the bucket. For most people, their autoantibodies will still be produced at that point and not much will have changed except for the immediate gluten reactions some people get. 

 

Keep a symptom and food diary and note new symptoms and when old symptoms fade away. I bet after half a year you will see a huge improvement, if not earlier.

 

Good luck!

Archived

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

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


  • Member Statistics

    • Total Members
      131,669
    • Most Online (within 30 mins)
      7,748
    CDR40
    Newest Member
    CDR40
    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.