Jump to content

  • You are not alone. Join Celiac.com for trusted gluten-free answers and forum support.



  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

Refractory Vs Non Responsive Celiac Disease

Coolclimates

Recommended Posts

Coolclimates Collaborator
Coolclimates
Posted

I'm wondering if there is a difference between refractory and non responsive Celiac Disease. Or are they the same thing? I'm really hoping that I don't have this...

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

Celiac.com Sponsor (A8-M):


Lisa Mentor
Lisa
Posted

I'm wondering if there is a difference between refractory and non responsive Celiac Disease. Or are they the same thing? I'm really hoping that I don't have this...

I would think that Non Responsive Celiac Disease, would precede Refractory Sprue.

With Non Responsive, things to look at would be:

Full compliance with the diet.

Eliminating other intolerances.

Eliminating other issues disorders/diseases.

Accuracy in testing/diagnosis.

EXTENDED time to heal.

After extensive testing, refractory may your last diagnosis regarding Celiac...although it may take years to come to that conclusion. I know of one person with Refractory Sprue and she lives a very, very productive life and will continue to do so. But, she loves liver ( :huh: ) and proud of it.

It will take years after a diagnosis of Celiac, and documented dietary failure, for a label of "Refractory". Don't think you're there yet. :D

Keep searching. And keep asking questions. :)

T.H. Community Regular
T.H.
Posted

I'm wondering if there is a difference between refractory and non responsive Celiac Disease. Or are they the same thing? I'm really hoping that I don't have this...

Okay, here's what I know:

"Nonresponsive celiac disease (NCD) can be described in terms of the clinical scenario of a lack of initial response to a prescribed gluten-free diet (GFD), or the recurrence of symptoms despite maintenance of GFD in a patient who responded initially to GFD."

"Refractory sprue (RS) is defined as initial or subsequent failure of strict GFD, for up to 1 yr, to improve the clinical picture and to restore normal intestinal architecture and function in patients who have a celiac-like enteropathy"

(from this study: Open Original Shared Link )

So non-responsive, if I understand it right, seems to be more applied to symptoms that persist, and refractory is applied to villi damage that persists.

The study that I just referenced had this conclusion, by the way:

"Based on this study, we conclude the following: 1) gluten contamination is the leading reason for NCD; 2) of NCD cases, 18% are due to RS; and 3) alternative diseases or those coexistent with celiac disease and gluten contamination should be ruled out before a diagnosis of RS is made."

Which sounds hopeful, in terms of the most likely possibilities for continuing symptoms, yeah?

Coolclimates Collaborator
Coolclimates
Posted
  • Author

thanks for your clarifications. I will be retested in a few weeks and really hope my antibodies are lower.

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. cristiana
      - cristiana replied to HelloFlowersGoodbyeFlour's topic in Related Issues & Disorders
      6

      Anyone else get a lot of upper respiratory infections?

      Definitely worth speaking to your gastroenterologist about this. My own told me that by using Gaviscon a barrier forms over the contents of the stomach and stops gas and acid irritating the throat. In fact, he said to me that because I found relief using Gaviscon that was a very clear indicator that reflux was the cause of that particular issue. A wedge...
    2. HelloFlowersGoodbyeFlour
      - HelloFlowersGoodbyeFlour replied to HelloFlowersGoodbyeFlour's topic in Related Issues & Disorders
      6

      Anyone else get a lot of upper respiratory infections?

      I did get the pneumonia vaccine about 4 years ago. I had this amazing allergist who did all those vitamin deficiencies test and told to get that vaccine. Unfortunately she retired. I haven’t been to an allergist in a few years, I’m not sure what my levels are now. I did have a pulmonologist who wasn’t concern and said I seemed fine to him that I was young...
    3. HelloFlowersGoodbyeFlour
      - HelloFlowersGoodbyeFlour replied to HelloFlowersGoodbyeFlour's topic in Related Issues & Disorders
      6

      Anyone else get a lot of upper respiratory infections?

      Yes I do have acid reflux. I’m not on anything for it at the moment. I sometimes wonder if that’s what it could be because I get heart burn every night. I may revisit my gastrointestinal doctor again. Thanks for the reply
    4. cristiana
      - cristiana replied to HelloFlowersGoodbyeFlour's topic in Related Issues & Disorders
      6

      Anyone else get a lot of upper respiratory infections?

      Hi @HelloFlowersGoodbyeFlour I wonder if you suffer from reflux, as if you do, you may find it could also be irritating your airways. I shall explain: I have to use a blue inhaler from time to time, and it seems to be related to reflux. Never had any trouble before my coeliac diagnosis, the reflux seemed to be something that developed following...
    5. trents
      - trents replied to HelloFlowersGoodbyeFlour's topic in Related Issues & Disorders
      6

      Anyone else get a lot of upper respiratory infections?

      Since initially getting your D checked a few years ago, has it since rebounded to normal levels? Sounds like at some point you got it checked again.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,125
    • Most Online (within 30 mins)
      10,442
    psasso76
    Newest Member
    psasso76
    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

    • cristiana
      Anyone else get a lot of upper respiratory infections?

      By cristiana · Posted

      Definitely worth speaking to your gastroenterologist about this. My own told me that by using Gaviscon a barrier forms over the contents of the stomach and stops gas and acid irritating the throat.  In fact, he said to me that because I found relief using Gaviscon that was a very clear indicator that reflux was the cause of that particular issue.   A wedge pillow will really help with this - or raising the top bed legs with bricks.
    • HelloFlowersGoodbyeFlour
      Anyone else get a lot of upper respiratory infections?

      By HelloFlowersGoodbyeFlour · Posted

      I did get the pneumonia vaccine about 4 years ago. I had this amazing allergist who did all those vitamin deficiencies test and told to get that vaccine. Unfortunately she retired.  I haven’t been to an allergist in a few years,  I’m not sure what my levels are now. I did have a pulmonologist who wasn’t concern and said I seemed fine to him that I was young etc. But yes I think I should at the very least get a different opinion. Thank you for your reply 
    • HelloFlowersGoodbyeFlour
      Anyone else get a lot of upper respiratory infections?

      By HelloFlowersGoodbyeFlour · Posted

      Yes I do have acid reflux. I’m not on anything for it at the moment. I sometimes wonder if that’s what it could be because I get heart burn every night. I may revisit my gastrointestinal doctor again. Thanks for the reply  
    • cristiana
      Anyone else get a lot of upper respiratory infections?

      By cristiana · Posted

      Hi @HelloFlowersGoodbyeFlour I wonder if you suffer from reflux, as if you do, you may find it could also be irritating your airways.  I shall explain: I have to use a blue inhaler from time to time, and it seems to be related to reflux.  Never had any trouble before my coeliac diagnosis, the reflux seemed to be something that developed following a holiday to France in 2019, where I had been exposed to gluten.    The reflux continued into the autumn and winter, my throat itched to begin with, particularly after meals, but it then that feeling of irritation seemed to spread to my lungs.  I even found it difficult to breathe on occasion. What stopped it in its tracks was using a wedge pillow at night, following a reflux diet (you can find them online), not eating 2-4 hours before bed and also having a dose of Gaviscon Advanced at night, which forms a barrier so that acid/food can't go back up your esophagus.  The throat irritation faded, and then I found it easier to breathe again. Just mentioning in case it could be a contributing factor.
    • trents
      Anyone else get a lot of upper respiratory infections?

      By trents · Posted

      Since initially getting your D checked a few years ago, has it since rebounded to normal levels? Sounds like at some point you got it checked again.
×
×
  • Create New...