Just diagnosed

[Lisacnj3]

I was just diagnosed with Celiac Sprue by my Rhumatologist by blood work only. I am to begin Plaquenil and was told to go completely gluten free. My question is isn’t Celiac Sprue and Celiac Disease the same thing?

[Jays911]

Yes.  Welcome to a whole new world.

[Lisacnj3]

Well I can hardly wait!

[CAS7]

Hello and welcome to our "Brave New World". If I can make it , anyone can. 

[Lisacnj3]

Thank you

[Jeanne Wudrick]

Because Celiac disease is a serious, lifelong condition, it is best to conform that diagnosis with an endoscopy by a Gastroenterologist. Here in Canada, the Canadian Celiac Association has very clear guidelines for diagnosis based on their long experience with it.  A blood test alone is not definitive enough, they say. Why?  Because other conditions can give you a ositive test result.  The endoscopy is the gold standard, and the treatment is a strict gluten free diet for life.  You can get a referral to a Gatroenterologist from your family doctor and go from there.  You will be asked to consume gluten for about 6 weeks before the test, about half a slice of bread a day is enough.  It's worth it to be under the care of a Gastroenterologist, who specializes in  gut diseases.

[trents]

4 minutes ago, Jeanne Wudrick said:

Because Celiac disease is a serious, lifelong condition, it is best to conform that diagnosis with an endoscopy by a Gastroenterologist. Here in Canada, the Canadian Celiac Association has very clear guidelines for diagnosis based on their long experience with it.  A blood test alone is not definitive enough, they say. Why?  Because other conditions can give you a ositive test result.  The endoscopy is the gold standard, and the treatment is a strict gluten free diet for life.  You can get a referral to a Gatroenterologist from your family doctor and go from there.  You will be asked to consume gluten for about 6 weeks before the test, about half a slice of bread a day is enough.  It's worth it to be under the care of a Gastroenterologist, who specializes in  gut diseases.

Jeanne, protocols for diagnosing celiac disease are changing. There is a shift toward using only serum antibody testing alone, when the values are strongly positive, to warrant a diagnosis of celiac disease. It is common in the UK to declare a diagnosis of celiac disease if tTG-IGA levels are 10x normal levels. In addition, there are other antibody tests that are less sensitive than the tTG-IGA but more specific such that if one tests positive for them there really is no room for doubt. And then you have the occasional phenomenon where someone has a negative biopsy despite having DH. 

And the consumption of .5 pieces of wheat bread daily may not be enough for a pretest gluten challenge. The Mayo clinic recommends 2 slices of wheat bread daily or the gluten equivalent.

All this to say that the CCA may not be the ultimate authority on celiac disease diagnosis.

[Jeanne Wudrick]

32 minutes ago, trents said:

Jeanne, protocols for diagnosing celiac disease are changing. There is a shift toward using only serum antibody testing alone, when the values are strongly positive, to warrant a diagnosis of celiac disease. It is common in the UK to declare a diagnosis of celiac disease if tTG-IGA levels are 10x normal levels. In addition, there are other antibody tests that are less sensitive than the tTG-IGA but more specific such that if one tests positive for them there really is no room for doubt. And then you have the occasional phenomenon where someone has a negative biopsy despite having DH. 

And the consumption of .5 pieces of wheat bread daily may not be enough for a pretest gluten challenge. The Mayo clinic recommends 2 slices of wheat bread daily or the gluten equivalent.

All this to say that the CCA may not be the ultimate authority on celiac disease diagnosis.

Thank you for your reply.  I am a big fan of the Ttg blood test, as it got me to the specialist, as it was so high.  My reason for writing is because I was concerned that Lisacnj3 was under the care of a rheumatologist for a gut problem and I still hope she gets to see a Gatroenterologist.  I have no other intetest than her future wellbeing.   

[Lisacnj3]

Thank you to both of you. I’ll see if my primary doctor will refer me to a gastroenterologist