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

Just Diagnosed

Cindy Jenkins

Recommended Posts

Cindy Jenkins Newbie
Cindy Jenkins
Posted

Hello my Niece has been Diagnosed with Celiac Disease and I am trying to get information for her.  She is still in the Hospital for the 1 billionth time.

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

Welcome. You have found a great place for information and support. There is a 'Newbie 101' thread at the top of the Coping section. That has a great deal of good information for her and other family members.  You are a wonderful Aunt to try and help her get used to the gluten free lifestyle. It can be a bit overwhelming at first for both the person diagnosed and their family. Hopefully the hospitalizations will soon be a thing of the past but it can take some time to fully heal. If she has any brothers or sisters they should be screened along with her mother and father.

Jmg Mentor
Jmg
Posted
2 hours ago, Cindy Jenkins said:

Hello my Niece has been Diagnosed with Celiac Disease and I am trying to get information for her.  She is still in the Hospital for the 1 billionth time.

Welcome :) 

It will doubtless be a big shock for your niece and family, but the good thing about celiac is that once gluten is eliminated from the diet recovery can be dramatic. I hope she's soon feeling better and the hospital visits become a thing of the past. 

The best book I've read following a recommendation here is: Real life with celiac disease by Melinda Dennis. 

 

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. glutengek
      - glutengek commented on Scott Adams's article in Bacterial Overgrowth, Candida Albicans and Celiac Disease
      1

      The Hidden Link Between Celiac Disease and Small Intestinal Bacterial Overgrowth (+Video)

      Great article! Important in itself. I do recognize my overall sensitivity to food. It may possibly explain why I prefer to cook when past experience with cooks who may just be a little less hygenic, but do watch glutens have caused stomach upsets.
    2. HectorConvector
      - HectorConvector replied to HectorConvector's topic in Related Issues & Disorders
      331

      Terrible Neurological Symptoms

      Yeah I can increase the amount to 500mg/day and see what happens. I know I haven't been consistent enough in supplementing vitamins.
    3. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Doctors
      10

      Second chance

      Not yet, been waisting time on western doctors. I went yesterday to my pcp thought we were on same page, I gave him the downplayed confirmed celiac medical note from bay area. As a patient I shouldn't have to Chase my medical, my medical SHOULD stick to us.Im am so exhausted and angery how medical has been, my whole way of thinking of our system is completely...
    4. knitty kitty
      - knitty kitty replied to Jmartes71's topic in Doctors
      10

      Second chance

      @Jmartes71, Have you tried a naturopathic or holistic doctor? Some posters in the past have commented theirs were more helpful than mainstream doctors.
    5. knitty kitty
      - knitty kitty replied to HectorConvector's topic in Related Issues & Disorders
      331

      Terrible Neurological Symptoms

      @HectorConvector, Have you tried taking 500 mg of the Thiamine Mononitrate that you have left? Thiamine Mononitrate may not be as helpful as other forms of thiamine, but since that's what you have on hand. Thiamine is safe and nontoxic even at high doses needed to correct thiamine deficiency. No harm in trying it. Neuroplastic...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,674
    • Most Online (within 30 mins)
      7,748
    MomSki
    Newest Member
    MomSki
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • HectorConvector
      Terrible Neurological Symptoms

      By HectorConvector · Posted

      Yeah I can increase the amount to 500mg/day and see what happens. I know I haven't been consistent enough in supplementing vitamins. 
    • Jmartes71
      Second chance

      By Jmartes71 · Posted

      Not yet, been waisting time on western doctors. I went yesterday to my pcp thought we were on same page, I gave him the downplayed confirmed celiac medical note from bay area. As a patient I shouldn't have to Chase my medical, my medical SHOULD stick to us.Im am so exhausted and angery how medical has been, my whole way of thinking of our system is completely changed.i wish I can upload my letter from KB 
    • knitty kitty
      Second chance

      By knitty kitty · Posted

      @Jmartes71, Have you tried a naturopathic or holistic doctor?  Some posters in the past have commented theirs were more helpful than mainstream doctors.  
    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      @HectorConvector,  Have you tried taking 500 mg of the Thiamine Mononitrate that you have left?   Thiamine Mononitrate may not be as helpful as other forms of thiamine, but since that's what you have on hand.    Thiamine is safe and nontoxic even at high doses needed to correct thiamine deficiency.   No harm in trying it. Neuroplastic changes in the brain may be caused by thiamine deficiency.   These changes can be seen in Wernicke's encephalopathy and Korsakoff's syndrome, Alzheimer's and Parkinson's. I googled "Neuroplastic Sensitization syndrome and thiamine pubmed" and see for yourself what it says.   Try taking 500 mg Thiamine Mononitrate and look for health changes.
    • HectorConvector
      Terrible Neurological Symptoms

      By HectorConvector · Posted

      This may seem non-relevant but I thought I'd add it here anyway to see what anyone thinks. Many might dismiss it but that's OK. I went through the entire history of this condition from its onset in 2010 or so, including the things that flare it up, and the timeline of what made it worse, the medications that worked and didn't, in ChatGPT (rolleyes I know lol)  and supplied it with all the clinical evidence I've had from tests etc.... After hours of "discussing" with it and finding research it "concluded" it's a chronic neuroplastic sensitization syndrome but of course said I should only get a proper diagnosis from a  doctor. When I saw the doctor on 9th February because this got worse he looked through all my medical history and the course of the "condition". I didn't tell him I'd used ChatGPT or mention what I thought it is because I still don't really know until I have a formal diagnosis. He came with the same conclusion as ChatGPT. Just thought it was an interesting co-incidence perhaps. As for myself, I'm not forming any conclusions til I can really know exactly what's happening and why and what stops it. Only then can I truly know.
×
×
  • 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.