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

Refractory Sprue

GlutenWrangler

By GlutenWrangler
in Coping with Celiac Disease

Recommended Posts

Guest celiac mum
Guest celiac mum
Posted

I'm so sorry to hear about your kidney and I wish you all the best . Its such a touch illness to grasp, well i find it difficult .

My children are not so good my 5 yr old daughter has been nil by mouth for 13 months now and is feed via a gastrostomy tube for 17hours a day , she too is on immunesuppresion and steriod tretament but at the moment there is no change in symptons or biopsy results , losing paitents with English doctors as they don'y have any answers,

I'm sure we will get that

Good luck to you I suppose I can understand in a way how you are feeling

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

Celiac.com Sponsor (A8-M):


GlutenWrangler Contributor
GlutenWrangler
Posted
  • Author

It must be very difficult for you to watch your children deal with their illness. I can only imagine what it is like to have to watch your kids suffer. I'm sorry to hear that your daughter's treatment has not worked so far. I can understand how you are losing patience with doctors. It can be so frustrating dealing with them sometimes. But I sincerely hope you can find a doctor that can help.

How are your children dealing with being so ill? Well I wish you and your children the best as well. Thanks,

-Brian

ryebaby0 Enthusiast
ryebaby0
Posted

Have you tried contacting Johns Hopkins pediatric GI department here in the states? They've done groundbreaking work with celiac/refractory sprue/ autoimmune enteropathy. You can actually email them to see if they would be interested in your children's case

Guest celiac mum
Guest celiac mum
Posted

That could be really interesting and helpful how would I go about that being in England.

I am getting frustrated with the doctors here and have been advised by lots of family to seek a second oppinion or advice

Thank you

GlutenWrangler Contributor
GlutenWrangler
Posted
  • Author

You would have to somehow bring your children to the USA so that they could be evaluated. You could contact Johns Hopkins, explain your situation, and see if they could accommodate your children. You could fly here during the 7 hours when your daughter isn't hooked up to the gastrostomy tube, and then when it's time for her to hook back up, you'll be at Johns Hopkins. I know it seems daunting, but it may be the change that your children need.

-Brian

Archived

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

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


  • Member Statistics

    • Total Members
      131,561
    • Most Online (within 30 mins)
      7,748
    lamps
    Newest Member
    lamps
    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
      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.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      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.