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

Some times worse than others. No rhyme or reason. Sigh.

DandelionH

By DandelionH
in Coping with Celiac Disease

Recommended Posts

DandelionH Apprentice
DandelionH
Posted

Nothin' to do at 3am but sit on the internet or curl on the bathroom floor, really. So here I am. Taking a break from crying and sweating after glutened by, I suspect, what got me last week too. Threw it all out etc. but am confused as to why I ate it for 3 days last week and felt like I was hit by a train, slept all day and had mild bloating and constipation but was ok. Then didn't for a few days just in case and had about half the quantity this week and am in AGONY.

It's happened before, too. One bit of the wrong thing- agony. Whole pieces of something else given to me before I was in the habit of asking what was in it rather than is it gluten-free (no, guys. Rye is not...) and barely a reaction at all...?

How long will this last? Should I abstain from things I was intolerant to after diagnosis for a while like dairy or would it take longer to redo that damage? I'm back to terrified now. Ow ow ow...

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

Celiac.com Sponsor (A8-M):


bartfull Rising Star
bartfull
Posted

When I have been glutened I lost all the things I had gotten back. The first time I waited a few months before trying them (one at a time of course), and I was OK. The second time was recently and SO MUCH worse! I've lost everything and am still not better. So...it looks like I not only lost the corn and soy that I lost when I first went gluten-free, but now I think I've lost dairy too. (And who knows what else??!!) So I'm back to square one. The oh so boring and restricted (and seemingly everlasting) elimination diet. :angry:

DandelionH Apprentice
DandelionH
Posted
  • Author

When I have been glutened I lost all the things I had gotten back. The first time I waited a few months before trying them (one at a time of course), and I was OK. The second time was recently and SO MUCH worse! I've lost everything and am still not better. So...it looks like I not only lost the corn and soy that I lost when I first went gluten-free, but now I think I've lost dairy too. (And who knows what else??!!) So I'm back to square one. The oh so boring and restricted (and seemingly everlasting) elimination diet. :angry:

Ugh! Woah! Sorry to hear this. So glad this thread is here to make things far less confusing because I would never have realised this could happen and it definitely does. Bother.
Square one. But square 2 eventually comes and there is hope yet :) .

Archived

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

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


  • Member Statistics

    • Total Members
      131,566
    • Most Online (within 30 mins)
      7,748
    Rrenee2990
    Newest Member
    Rrenee2990
    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

    • cristiana
      How long does it take to gain weight?

      By cristiana · Posted

      That's great news, you can do this.  Let us know how things go and don't hesitate to ask if you have any more questions. Cristiana 😊
    • petitojou
      How long does it take to gain weight?

      By petitojou · Posted

      Thank you so much for sharing your experience and I found myself giggling with happiness as I read how your body reached such spring! And I hope that your current journey is also successful!! Definitely starting the food diary! So many amazing advices. And it’s very scary. It really hits all our soft spots as well as our confidence system. Most doctors I went thought I was underage despite being in my late 20s. Right now I look like am I twelve, but is also this body that’s taking so much, so I might as well love it too! Going to make the necessary changes and stay in this path. Thank you again! 🫶
    • petitojou
      How long does it take to gain weight?

      By petitojou · Posted

      Thank you so much for the information and kind message! Reading this transformed how I’ve been viewing my efforts and progress. Guess there’s still a lot to celebrate and also heal 😌  Yes, I’ve been taking it! Just recently started taking a multivitamin supplement and separated vitamin D! I also took chewable Iron polymaltose for ferritin deficiency 2 months ago but was unable to absorb any of it.  Thank you again! Hearing such gentle words from the community makes my body and heart more patient and excited for the future. 
    • ckeyser88
      Roommate search

      By ckeyser88 · Posted

      I am looking for a roomie in Chicago, Denver or Nashville! 
    • Scott Adams
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
×
×
  • 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.