Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Endoscopy

Lobstah

By Lobstah
in Dermatitis Herpetiformis

Recommended Posts

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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


squirmingitch Veteran
squirmingitch
Posted

I'm hoping right along with you.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,645
    • Most Online (within 30 mins)
      7,748
    MinionMe
    Newest Member
    MinionMe
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.3k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Popcorn pain

      By trents · Posted

      @JenFur, if this is microwave popcorn you are using, check for added ingredients that could be causing a reaction such as flavorings which might be hidden sources of gluten.
    • trents
      Popcorn pain

      By trents · Posted

      Welcome to the forum, @JenFur! You must be relatively new to the celiac journey. I wish it were as simple as just having to cut out gluten and all our gut issues magically disappear. It is very common for those with celiac disease to develop intolerance/sensitivity to other foods. Often it is because the protein structure of some other foods resembles that of gluten. Sometimes it is because damage the damage done to the gut lining by celiac disease wipes out cells that produce enzymes needed to break down those foods. Sometimes it is because the "leaky gut syndrome" associated with celiac disease causes the immune system to incorrectly identify other food proteins as threats or invaders. The two most common non-gluten foods that cause trouble for a lot of celiacs are dairy and oats. But soy, eggs and corn are also on that list. Sometimes these non-gluten food intolerances disappear with time and the healing of the villous lining of the small bowel.
    • JenFur
      Popcorn pain

      By JenFur · Posted

      I love popcorn but it doesn't love me.  Right now my gut hurts and I am bloated and passing gas.  Am I just super sensitive. I thought popcorn was gluten free 🤔 
    • trents
      Type 1 diabetes (4year old) and positieve ttg

      By trents · Posted

      Welcome to the forum, @marinke! "Type 1a diabetes (DM1) is associated with an increased risk of celiac disease (celiac disease) (1)." from: https://diabetesjournals.org/care/article/35/10/2083/38503/IgA-Anti-transglutaminase-Autoantibodies-at-Type-1 "The prevalence of celiac disease (celiac disease) in children with type 1 diabetes (T1D) is 5.1%, and it is often asymptomatic (1)." from: https://diabetesjournals.org/care/article/48/2/e13/157637/Diagnostic-Outcomes-of-Elevated-Transglutaminase So, this is 5x the rate found in the general population.
    • Mari
      Long term recovery

      By Mari · Posted

      Hi James47, You are less than 2 years into your recovery from Celiacs.  Tell us more about the problems you are having. Do you just want to get rid of belly fat or are you still having symptoms like gas and bloating.    For symptoms you may need to change your diet and take various supplements that you cannot adsorb from the foods you eat because of the damage caused by the autoimmune reaction in your small intestine. 
×
×
  • Create New...