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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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  • Posts

    • trents
      Are Lindt chocolate balls gluten free?

      By trents · Posted

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    • knitty kitty
      My only proof

      By knitty kitty · Posted

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    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
    • marion wheaton
      Are Lindt chocolate balls gluten free?

      By marion wheaton · Posted

      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
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