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Refractory Vs Non Responsive Celiac Disease

Coolclimates

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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...

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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.

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