Jump to content

  • 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):

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

  • 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. Aretaeus Cappadocia
      - Aretaeus Cappadocia commented on Scott Adams's article in Summer 2026 Issue
      1

      New Study Finds 1 in 10 Celiac Patients May Have Additional Autoimmune Disorders (+Video)

      Kinda glad I read this and some related materials. My celiac symptoms seem mild and I sometimes question if the hassle of the gluten-free diet/lifestyle is worth it for mild symptoms. This is one of the answers to that. gluten-free diet can delay onset/progression of autoimmune polyglandular syndrome, but cannot reverse it.
    2. Aretaeus Cappadocia
      - Aretaeus Cappadocia replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      11

      1 Year Elimination Diet journey

      makes sense. sometimes you learn one path and never question it until you see someone take a different path
    3. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      11

      1 Year Elimination Diet journey

      Interesting I read that toasted kasha groats have nutty flavor which I thought like oatmeal with banana and yogurt. Yes quinoa I have for dinner looking to switch oatmeal to buckwheat for breakfast. I have to look into amaranth
    4. Aretaeus Cappadocia
      - Aretaeus Cappadocia replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      11

      1 Year Elimination Diet journey

      I've never tried bananas or yogurt with kasha. It would probably work but in my mind I think of kasha as being on the savory side so I always add butter, peanut butter, or shredded cheddar cheese. Next time I make it I will try yogurt and banana to see for myself. Amaranth has a touch of sweet and I like to pair it with fruit. Quinoa is more neutral. I eat...
    5. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      11

      1 Year Elimination Diet journey

      The basic seems more like oatmeal. You can also add yogurt banana to it like oatmeal right. I see rinsing as first step in basic recipes like this one https://busycooks.com/how-to-cook-toasted-buckwheat-groats-kasha/ I don't understand why since kasha is toasted and not raw. What about buckwheat flake cereal or is this better to go with.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,058
    • Most Online (within 30 mins)
      10,442
    Sandi Barnes
    Newest Member
    Sandi Barnes
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      1 Year Elimination Diet journey

      By Aretaeus Cappadocia · Posted

      makes sense. sometimes you learn one path and never question it until you see someone take a different path
    • xxnonamexx
      1 Year Elimination Diet journey

      By xxnonamexx · Posted

      Interesting I read that toasted kasha groats have nutty flavor which I thought like oatmeal with banana and yogurt. Yes quinoa I have for dinner looking to switch oatmeal to buckwheat for breakfast. I have to look into amaranth 
    • Aretaeus Cappadocia
      1 Year Elimination Diet journey

      By Aretaeus Cappadocia · Posted

      I've never tried bananas or yogurt with kasha. It would probably work but in my mind I think of kasha as being on the savory side so I always add butter, peanut butter, or shredded cheddar cheese. Next time I make it I will try yogurt and banana to see for myself. Amaranth has a touch of sweet and I like to pair it with fruit. Quinoa is more neutral. I eat it plain, like rice, with chicken stock or other savory things, or with coconut milk. Since coconut milk works, I would think yogurt would work (with the quinoa). I went to the link you posted. I really don't know why they rinse the kasha. I've eaten it for decades and never rinsed it. Other than that, her recipe seems fine (that is, add the buckwheat with the water, rather than wait until the water is boiling). She does say something that I forgot: you want to get roasted/toasted buckwheat or you will need to toast it yourself. I've never tried buckwheat flakes. One potential issue with flakes is that there are more processing steps and as a rule of thumb, every processing step is another opportunity for cross-contamination. I have tried something that was a finer grind of the buckwheat than the whole/coarse and I didn't like it as much. But, maybe that was simply because it wasn't "normal" to me, I don't know.
    • xxnonamexx
      1 Year Elimination Diet journey

      By xxnonamexx · Posted

      The basic seems more like oatmeal. You can also add yogurt banana to it like oatmeal right. I see rinsing as first step in basic recipes like this one https://busycooks.com/how-to-cook-toasted-buckwheat-groats-kasha/ I don't understand why since kasha is toasted and not raw. What about buckwheat flake cereal or is this better to go with. 
    • Scott Adams
      Pain in the right side of abdomen

      By Scott Adams · Posted

      Celiac disease can have neurological associations, but the better-described ones include gluten ataxia, peripheral neuropathy, headaches or migraine, seizures, cognitive symptoms, and, rarely, cerebral calcifications or white-matter changes. Some studies and case reports describe brain white-matter lesions in people with celiac disease, but these are not specific to celiac disease and can have many other explanations. A frontal lobe lesion could mean many different things depending on the exact wording of the report: a white-matter spot, inflammation, demyelination, a small old stroke, migraine-related change, infection, trauma, vascular change, seizure-related change, tumor-like lesion, artifact, or something that resolved on repeat imaging. The word “transient” usually means it changed or disappeared, which can happen with some inflammatory, seizure-related, migraine-related, vascular, or imaging-artifact situations.  Hopefully they will find nothing serious.
×
×
  • Create New...