Post by sandra on May 1, 2015 10:47:43 GMT
Re: Still positive
Posted by Charlotte, Oxford on 1/5/2015, 10:52:52, in reply to "Still positive "
81.156.190.x
This must be concerning. If it's certain you have been strictly gluten-free all this time it's possible you have a non responsive form of coeliac disease called Refractory CD (RCD). This is more likely if you have had a continuation or return of CD like symptoms, including weight loss, and are over 50.
There is a lot of Internet info on the two types of RCD, some of it quite alarming, and some of it quite old. This 2013 article may be useful:
Update on the Diagnosis and Management of Refractory Coeliac Disease
www.hindawi.com/journals/grp/2013/518483/
The good news is that RCD1 would seem to be more likely (and this is more treatable). If the kind of damage associated with the more serious RCD2 had been found I think you would have been contacted before now (4 months seems a long time to wait though).
The NAFLD may just be an incidental finding. It's very common. There is an association with (untreated) CD. This 2014 article explains the possible connection:
www.researchgate.net/publication/228082219_A_pathogenetic_link_between_non-alcoholic_fatty_liver_disease_and_celiac_disease
One other thought this article brings to mind: if your gastro consultant is uncertain about the diagnosis of RCD, and you do not have other risk factors for NAFLD (obesity), and you have gastro symptoms that include steattorhea, it might be worth asking for Small Intestine Bacterial Growth (SIBO) to be tested for. This is a common condition that can connect CD and the liver (see diagram in the article). The simplest 'test' is usually an 'empirical' trial of a week's antibiotic like metronidazole and could be easily done by your GP. If gastro symptoms resolve very fast SIBO might be suspected.
The reason I mention this particularly is because SIBO sometimes mimics CD gut damage on biopsy.
Posted by Charlotte, Oxford on 1/5/2015, 10:52:52, in reply to "Still positive "
81.156.190.x
This must be concerning. If it's certain you have been strictly gluten-free all this time it's possible you have a non responsive form of coeliac disease called Refractory CD (RCD). This is more likely if you have had a continuation or return of CD like symptoms, including weight loss, and are over 50.
There is a lot of Internet info on the two types of RCD, some of it quite alarming, and some of it quite old. This 2013 article may be useful:
Update on the Diagnosis and Management of Refractory Coeliac Disease
www.hindawi.com/journals/grp/2013/518483/
The good news is that RCD1 would seem to be more likely (and this is more treatable). If the kind of damage associated with the more serious RCD2 had been found I think you would have been contacted before now (4 months seems a long time to wait though).
The NAFLD may just be an incidental finding. It's very common. There is an association with (untreated) CD. This 2014 article explains the possible connection:
www.researchgate.net/publication/228082219_A_pathogenetic_link_between_non-alcoholic_fatty_liver_disease_and_celiac_disease
One other thought this article brings to mind: if your gastro consultant is uncertain about the diagnosis of RCD, and you do not have other risk factors for NAFLD (obesity), and you have gastro symptoms that include steattorhea, it might be worth asking for Small Intestine Bacterial Growth (SIBO) to be tested for. This is a common condition that can connect CD and the liver (see diagram in the article). The simplest 'test' is usually an 'empirical' trial of a week's antibiotic like metronidazole and could be easily done by your GP. If gastro symptoms resolve very fast SIBO might be suspected.
The reason I mention this particularly is because SIBO sometimes mimics CD gut damage on biopsy.