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Endoscopy

Lobstah

By Lobstah
in Dermatitis Herpetiformis

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Lobstah Rookie
Lobstah
Posted

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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squirmingitch Veteran
squirmingitch
Posted

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:

Lobstah Rookie
Lobstah
Posted
  • Author

That seems really WRONG :)  He said 2 slices of bread per day should cover it.

My MIND said "2 REAL craft beers per day should cover it"...and maybe a donut, just for insurance ;)

 

Jim

SMRI Collaborator
SMRI
Posted
 
I vote for the donuts.  I miss donuts.  My husband bought a donuts when we were out shopping today, brat!
  • 4 weeks later...
Lobstah Rookie
Lobstah
Posted
  • Author

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.

squirmingitch Veteran
squirmingitch
Posted

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

Lobstah Rookie
Lobstah
Posted
  • Author

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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squirmingitch Veteran
squirmingitch
Posted

I'm hoping right along with you.

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      My journey is it gluten or fiber?

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      what Benfotiamine should I take as Life Extension contains both Ben and TTFD.
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      I take both Benfotiamine and TTFD.   You might want to start with the Benfotiamine for a few days and then add in the TTFD.   You can look for NeuroMag (Magnesium Threonate).  A magnesium glycinate is fine, too.  Doctor's Best is a good brand.  Don't take more than 300mg total per day of magnesium or it may have a laxative effect.   Be sure to take the B Complex.  The Benfotiamine and TTFD will need the other B vitamins.  
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