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


ryebaby0

Recommended Posts

ryebaby0 Enthusiast

I just wondered what your experiences with GIs regarding "refractory sprue" are. We had a consult with an experienced celiac GI and I was surprised that the (apparent) current thinking/research is that there really is no such thing as "refractory sprue" -- if you don't respond to a strict gluten-free diet clincally and/or pathologically, then by definition you don't have any form of celiac sprue, you have some other autoimmune problem manifesting itself as a celiac look-alike. (probably autoimmune enteropathy). I couldn't believe that after months of a gluten-free diet now we're being told that it may not be neccessary at all (or at least until my son heals, which will probably take the better part of a year)

Joanna


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



Celiac.com Sponsor (A8-M):



Archived

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

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,542
    • Most Online (within 30 mins)
      7,748

    Payday
    Newest Member
    Payday
    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

    • xxnonamexx
      Hi Florence- This forum has been a wealth of knowledge on supplements. I am always weary of brand names as well. What I found through Consumerlabs which independently tests for metals, digestive breakdown of supplements and if what the packages states is indeed what is in the product I have found the number one for super B complex is Kirkland and for multivitamin for Men and woman 50+ Natures made multivitamin for her as it gives the right amount needed for both men and women as the mens has too much. For Probiotics ALign came out on top the 5x and the one for bloating. Knitty Kitty provided me good supplement brands as well.
    • Florence Lillian
      Hi all: I have had Celiac for 47 years. I have not seen much info on the following, and 3 of these  affect me. In case this info helps someone else, I offer the following: Gluten-like proteins is a topic I want to share, as they have added bad reactions to my Celiac condition.  Reactions can range from Gut discomfort such as Diarrhea, Nausea, Vomiting, and inflammation causing a feeling of being very warm to hot. The following are considered  Gluten-Mimicking Proteins: Corn (Zein protein) (this causes inflammation with me). Millet Panicin protein) Sorghum (Kafirin protein).  Potato (Patatin protein, is NOT considered a Gluten-Mimic, nor is Oats (Avenin) but they do cause reactions in some Celiac people... I eat potato and I vomit, and get diarrhea. gluten-free Oats causes me to have Nausea, and Corn causes me  Inflammation.  I hope this helps someone.  Wishing the very best to all.   Florence.  
    • Wheatwacked
      @Margaret Wheatley Thank you and welcome to the forum.
    • Margaret Wheatley
      I have been diagnosed with Refractory Celiac disease Type 2. Which is quite a shock because my Gastroenterologist has been performing gastroscopy & colonoscopy's - 4 in 2025 & a gastroscopy on the 20/3/26 and they didnot tell me how bad my Celiacs disease is and has been. It was my haematologist that checked more of my symptoms and came up with the result. So I am trying hard to get some nutrition into my body. All of this info on supplements and nutritional diets is very helpful.  Regards Margaret. 
    • Jmartes71
      Im very big on nateral remedies and just read that my go to herb is a no no and was wondering if factual or fiction. I read on Google, I know don't read or take to heart, however it stated that Echinacea isn't good for those with compromise autoimmune because it can cause inflammation. Has anyone else heard of this?Ive been battling sibo so wondering if any connection though haven't been religious on my vitamins these last several months because of testing ect.Sibo medications im allergic,the last few prescribed. Gi  dr dropped me but took me back.Im frustrated too but its the autoimmune part .
×
×
  • 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.