Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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):
    GliadinX



    Celiac.com Sponsor (A1-M):
    GliadinX


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Does It Get Worse Before It Gets Better?


rantipoles

Recommended Posts

rantipoles Newbie

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):
NutHouse! Granola Co.
Daura Damm



Celiac.com Sponsor (A8-M):
GliadinX


cyclinglady Grand Master

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

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

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.


  • Celiac.com Sponsor (A19):
    Food for Life



  • Member Statistics

    • Total Members
      129,979
    • Most Online (within 30 mins)
      7,748

    mary lou grolimond olson
    Newest Member
    mary lou grolimond olson
    Joined

  • Celiac.com Sponsor (A20):
    Daura Damm


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):
    GliadinX




  • Celiac.com Sponsor (A21):
    Little Northern Bakehouse



  • Upcoming Events

  • Posts

    • Scott Adams
      It sounds like your gastroenterologist is becoming increasingly confident that celiac disease is the likely diagnosis based on both your older and newer lab results. Her suggestion to call each Monday for possible cancellations is actually a great strategy—especially given how long the wait is until your August 29th appointment. It’s also a good sign that she’s advocating for you to be seen sooner, which shows she’s taking your case seriously. The fact that some labs might not have been drawn yet due to overlap with your functional health doctor’s upcoming testing adds a layer of confusion, but that’s unfortunately common when multiple providers are involved. Hopefully, the GI’s...
    • cristiana
      Thanks for sharing that film, @trents.  I am not sure how I missed that film as I see it is a few years old, but it is very good.  I think you should be fine if you take your own packed lunch and eat it from your own lunchbox etc.  Might be worth doing a lunchtime recce to see how cramped the room is before making a decision - for all you know, there may be other people  there who don't eat gluten?
    • cameo674
      The GI doc messaged me this afternoon that she believes that the new blood work added to the old is definitely  looking like a celiac diagnosis is in my future.  She wants to me to call into scheduling each Monday to see if I can get my August 29th appointment moved up due to cancellations.  I have never had a doctor recommend that.  She also said there were additional labs that she requested still out that have not come back yet; so, they may have been missed drawing those since the functional health doctor has a whole slew of labs that I am suppose to be waiting until August 27th to do. I am still waiting to hear on whether or not she will allow me to do pill prep versus the typical...
    • Alibu
      Well, I've made if from the pre-diagnosis forum to here!  I've been diagnosed with "latent" or "potential" celiac and my doctor has suggested me to go gluten-free before my appointment with him in October (first available, LOL).  My ttg-iga was 152, my EMA was positive, I have the gene, but my biopsy was negative (and he took 12 samples), so it makes sense to go gluten free to see if I improve. I know the basics - I can find lists of things to avoid, I know about hidden dangers, etc. all of that.  Where I'm struggling is just STARTING.  I need to go shopping and stock up on some staples.  My goal is to not try to find gluten-free alternatives, but to focus on naturally gluten-free foods like...
    • Scott Adams
      It’s great that you were finally able to see a gastroenterologist—and even luckier to get in the same day as your referral! It sounds like your GI is taking a very thorough approach, which is reassuring given your complex symptoms and history. The confusion around your different tissue transglutaminase (tTG) antibody results is understandable. The variation between your December and June labs may be due to multiple factors, including differences in the lab performing the test (Quest vs. Mayo Clinic), the specific assay used, and the amount of gluten you had been consuming before each test. Antibody levels can drop significantly when gluten is reduced or eliminated from the...
×
×
  • Create New...