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

Sailing Along Then....wham!

GFreeMO

By GFreeMO
in Coping with Celiac Disease

Recommended Posts

GFreeMO Proficient
GFreeMO
Posted

I have had several good day where I have felt pretty good lately.  I went out hiking and felt strong and good. Then something happened.  I didn't add anything new to eat.  I've been doing the same thing that I always do as far as food is concerned.  I got D and mucus out of nowhere.  Sometimes I feel like since celiac is an autoimmune disease, sometimes I just feel like I get a flare up out of no where.  I am pretty certain that I haven't had any gluten.  Does this happen to anyone else..good days followed by a few not so good ones out of the blue?

I know that with other autoimmune diseases, they can flare up at any given time from stress or whatever.

Thanks 

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

Celiac.com Sponsor (A8-M):


shadowicewolf Proficient
shadowicewolf
Posted

Have you considered that you might have picked up a stomach bug somewhere?

GFreeMO Proficient
GFreeMO
Posted
  • Author

I don't think it's a bug b/c this happens too often for it to be one.

lynnieloo Newbie
lynnieloo
Posted

I am right there with you, yesterday and today . . . my gut and my low back are hurting so badly I just want to die.  The two things I ingested that i'm now questioning are a bowl of chili I thawed and ate on Saturday night (which I made (checking all ingredients for gluten-free), ate a bowl without incident, and froze) and some Gas-x taken yesterday around lunch.  I definitely think I've been glutened - this is the first time since I was Dx'd and started gluten-free diet.  This is as bad or worse than when I was not eating gluten-free!  What do you do when you hurt this bad to get some relief???

GFreeMO Proficient
GFreeMO
Posted
  • Author

All that you can really do it wait it out, drink water and hot mint tea.  The mint tea helps to get the gas out.  I feel the exact same way that you do.  I have been eating Hershey's kisses and I think I may have eaten too many and it's the lactose bothering me.  Who knows, with celiac sometimes you have no idea.  Hope you feel better.

mushroom Proficient
mushroom
Posted

Last I heard the Gas-X chewable tablets were not gluten free; the gelcaps are.

nan42 Newbie
nan42
Posted

I can definitly relate to what your talking about and it is very frustrating. It happened to me this morning. I had a cup of coffee like i always do with nothing different in it and within 30 min. i was all bloated with an aching in my stomach. I wish this was easier to deal with.

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

Celiac.com Sponsor (A8-M):


GottaSki Mentor
GottaSki
Posted

Flares happen to me.

pricklypear1971 Community Regular
pricklypear1971
Posted

It took me at least 9 months to have any sort of predictable bathroom themes. And another six to notice it stopped at 9. And another 6 to not panic when things would change from time to time.

I'm not saying to discount what you notice at all - but it did take me a while. And if you get sick at any point in there ...things can just get weird. Sometimes you'll recover quickly, next time it will take forever.

It's frustrating.

GFreeMO Proficient
GFreeMO
Posted
  • Author

Thanks everyone.  It's good to know that I am not the only one that experiences these out of the blue flares.  I can be feeling really good with no stomach issues and then a few days later while eating the same things, I get digestive issues.  I guess it comes with the territory of having a bowel disease.  

Prickly, that is great advice.  I really need to quit paying attention and just get what I get.  You are also right in that it is frustrating b/c just when you think you have your celiac all under control, something happens and it's hard not to get caught up in it.

dilettantesteph Collaborator
dilettantesteph
Posted

I think that it can come from a lot of things.  A bug which you mistake for gluten, someone leaving a crumb somewhere for you to pick up accidentally, going through the flour isle at the store right after a spill has been cleaned up so that you can't tell that there is still flour in the air, and inconsistent contamination.  Sometimes I have a food that I can eat much of the time, but some boxes of it will get me.  Last time I bought 4 boxes of buckwheat and sorted through them, I found a wheat berry in 3 of the 4 boxes.  I could have eaten it for breakfast sometimes and been fine, and then when I got the batch with the wheat berry, I would have gotten sick and would not have know why.  That's why I buy my grains whole and sort them.

 

I hope you feel better soon.

surviormom Rookie
surviormom
Posted

Feel Better!  I say this a lot, but I learn more all the time.

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. GlorietaKaro
      - GlorietaKaro replied to GlorietaKaro's topic in Super Sensitive People
      3

      Am I nuts?

      Thanks to both of you for your responses! Sadly, even after several years of very strict gluten avoidance, I remember the symptoms well enough that I am too frightened to risk a gluten challenge— heartbeat and breathing problems are scary— Scott, thank you for the specific information— I will call around in the new year to see if I can find anyone. In t...
    2. trents
      - trents replied to GlorietaKaro's topic in Super Sensitive People
      3

      Am I nuts?

      Welcome to the celiac.com community, @GlorietaKaro! As Scott indicated, without formal testing for celiac disease, which would require you to have been consuming generous amounts of gluten daily for weeks, it would be not be possible to distinguish whether you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). Their symptoms overlap. The difference...
    3. lalan45
      - lalan45 replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      29

      My journey is it gluten or fiber?

      That’s really frustrating, I’m sorry you went through that. High fiber can definitely cause sudden stomach issues, especially if your body isn’t used to it yet, but accidental gluten exposure can feel similar. Keeping a simple food/symptom journal and introducing new foods one at a time can really help you spot patterns. You’re already doing the right things ...
    4. Russ H
      - Russ H posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Anti-endomysial Antibody (EMA) Testing

      I thought this might be of interest regarding anti-EMA testing. Some labs use donated umbilical cord instead of monkey oesophagus. Some labs just provide a +ve/-ve test result but others provide a grade by testing progressively diluted blood sample. https://www.aesku.com/index.php/ifu-download/1367-ema-instruction-manual-en-1/file Fluorescence-labelled...
    5. Scott Adams
      - Scott Adams replied to JoJo0611's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Just diagnosed today

      First, please know that receiving two diagnoses at once, especially one you've never heard of, is undoubtedly overwhelming. You are not alone in this. Your understanding is correct: both celiac disease and Mesenteric Panniculitis (MP) are considered to have autoimmune components. While having both is not extremely common, they can co-occur, as chronic inflammation...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,806
    • Most Online (within 30 mins)
      7,748
    IleneG
    Newest Member
    IleneG
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • GlorietaKaro
      Am I nuts?

      By GlorietaKaro · Posted

      Thanks to both of you for your responses!  Sadly, even after several years of very strict gluten avoidance, I remember the symptoms well enough that I am too frightened to risk a gluten challenge— heartbeat and breathing problems are scary— Scott, thank you for the specific information— I will call around in the new year to see if I can find anyone. In the meantime, I will carry on has I have been— it’s working! Thanks also for the validation— sometimes I just feel crushed by disbelief. Not enough to make me eat gluten though—
    • trents
      Am I nuts?

      By trents · Posted

      Welcome to the celiac.com community, @GlorietaKaro! As Scott indicated, without formal testing for celiac disease, which would require you to have been consuming generous amounts of gluten daily for weeks, it would be not be possible to distinguish whether you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). Their symptoms overlap. The difference being that celiac disease is an autoimmune disorder that damages the lining of the small bowel. We actually no more about celiac disease than we do about NCGS, the mechanism of the latter being more difficult to classify. There are specific antibody tests for celiac disease diagnosis and there is also the endoscopy/biopsy of the small bowel lining. Currently, there are no tests to diagnose NCGS. Celiac disease must first ruled out. Researchers are working on developing testing methods to diagnose celiac disease that do not require a "gluten challenge" which is just out of the question for so many because it poses serious, even life-threatening, health risks. But we aren't there yet.
    • lalan45
      My journey is it gluten or fiber?

      By lalan45 · Posted

      That’s really frustrating, I’m sorry you went through that. High fiber can definitely cause sudden stomach issues, especially if your body isn’t used to it yet, but accidental gluten exposure can feel similar. Keeping a simple food/symptom journal and introducing new foods one at a time can really help you spot patterns. You’re already doing the right things with cleaning and separating baking—also watch shared toasters, cutting boards, and labels like “may contain.”
    • Russ H
      Anti-endomysial Antibody (EMA) Testing

      By Russ H · Posted

      I thought this might be of interest regarding anti-EMA testing. Some labs use donated umbilical cord instead of monkey oesophagus. Some labs just provide a +ve/-ve test result but others provide a grade by testing progressively diluted blood sample. https://www.aesku.com/index.php/ifu-download/1367-ema-instruction-manual-en-1/file Fluorescence-labelled anti-tTG2 autoantibodies bind to endomysium (the thin layer around muscle fibres) forming a characteristic honeycomb pattern under the microscope - this is highly specific to coeliac disease. The binding site is extracellular tTG2 bound to fibronectin and collagen. Human or monkey derived endomysium is necessary because tTG2 from other mammals does not provide the right binding epitope. https://www.mdpi.com/1422-0067/26/3/1012
    • Scott Adams
      Just diagnosed today

      By Scott Adams · Posted

      First, please know that receiving two diagnoses at once, especially one you've never heard of, is undoubtedly overwhelming. You are not alone in this. Your understanding is correct: both celiac disease and Mesenteric Panniculitis (MP) are considered to have autoimmune components. While having both is not extremely common, they can co-occur, as chronic inflammation from one autoimmune condition can sometimes be linked to or trigger other inflammatory responses in the body. MP, which involves inflammation of the fat tissue in the mesentery (the membrane that holds your intestines in place), is often discovered incidentally on scans, exactly as in your case. The fact that your medical team is already planning follow-up with a DEXA scan (to check bone density, common after a celiac diagnosis) and a repeat CT is a very proactive and prudent approach to monitoring your health. Many find that adhering strictly to the gluten-free diet for celiac disease helps manage overall inflammation, which may positively impact MP over time. It's completely normal to feel uncertain right now. Your next steps are to take this one day at a time, focus on the gluten-free diet as your primary treatment for celiac, and use your upcoming appointments to ask all your questions about MP and what the monitoring plan entails. This dual diagnosis is a lot to process, but it is also the starting point for a managed path forward to better health. This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
×
×
  • 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.