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

Screaming For Help!


ConcernedMissy30

Recommended Posts

ConcernedMissy30 Newbie

My mother got deathly sick last year in October. During her many hospital stays it was finally determined that she had Celiac disease. We have been on a Celiac diet since then. After giving her TPN treatments through IV to build her back up, she was doing really well. The vomiting and diarrhea have returned, and I noticed that she has lost a lot more weight. In January, my mother weighed 162. Two weeks ago May 3, she weighed 130, and now she weighs 121.5lbs as of May 12th. I am at a lost for words. I don't know what to do...or where to get help. The doctors don't seem to be doing anything. Any help at all would be appreciated.

Thank you,

Missy


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



Celiac.com Sponsor (A8-M):



Nantzie Collaborator

I'm so sorry she, and you, are having such a rough road. It sounds like she might be getting gluten somewhere. Are you sure she's 100% gluten-free? No second-hand gluten (cross contamination)?

Quite often we hear about the only direction from doctors and dieticians is just don't eat it. Sometimes they don't seem to be aware of things like you have to get a new toaster and new cutting board, verify your shampoos, cosmetics, etc. You also have to be careful of foods if you're in a shared environment. For example, you can't put a knife in the butter to butter a piece of gluteny bread, and then use the same butter for her gluten-free bread. The butter is no longer useable for after it's used for gluten.

As her body gets more used to being gluten-free, something that may have seemed fine at first may be causing a reaction.

Nancy

happygirl Collaborator

You need a new doctor, and they need to run another Celiac panel, (the full panel) to see if her problems are still gluten related.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,565
    • Most Online (within 30 mins)
      7,748

    Gma Marsh
    Newest Member
    Gma Marsh
    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

    • petitojou
      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
      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
      I am looking for a roomie in Chicago, Denver or Nashville! 
    • Scott Adams
      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.
    • Scott Adams
      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
×
×
  • 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.