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Lobstah

Endoscopy

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Just met with my new GI Doc down here in Florida.  I was armed (and dangerous) with as much info as could be used to "educate" him, should the need arise.

 

Pleasantly, he was very knowledgeable about Celiac and DH.  We had a very good discussion for about 1/2hr.  He DOES want me back on gluten for 2wks before the endo.  He said that it was his experience that it's important to establish a baseline reaction in the villi to determine the effectiveness of eliminating gluten. 

He also made the point that for a small percentage of Celiacs, eliminating gluten still doesn't fix things.  He had a term for that, but said it's important to be able to contrast/compare to a baseline.

 

So...the bad news is I'm supposed to go back on gluten for a min of 2wks.

The GOOD news is, if you've gotta go back on gluten, Thanksgiving might not be such a bad time to do it ;)

 

Just sayin.

 

Jim

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It's called refractory sprue or refractory celiac.

 

Well, if you gotta do it, you gotta do it & as long as you're going to do it why not just go for a month & cover Thanksgiving & Christmas? :lol:  :lol:  :lol:


Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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Well...I shut off the gluten last Sunday, and DH is still increasing.  Hopefully will taper off now, since that's what it did when I first went gluten-free.

I remember being like this ALL THE TIME before being diagnosed.  Not fun, as everyone here well knows.

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I'm keeping my fingers crossed for you. I surely hope this flare will be short lived. 


Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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Well...so far it's still on the uptake.  It appears that at least for me, DH is dependent on the level of gluten in my system...and there's a lag between the intake of gluten, and the appearance of my DH.

I totally stopped gluten upon being diagnosed.  It took about 2wks for things to start to settle down.  Then the GI doc wanted me back on gluten to establish base-line reaction in the gut.

Great.  Went back on gluten for about a month.  DH didn't show up until the last week of that, at least not so that I noticed it much.

I've been gluten-free now for 10days...and DH is still increasing, new areas almost daily.

I'm hoping that by the weekend, it starts to subside again.

 

Jim

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I'm hoping right along with you.


Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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