Jump to content

  • 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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Jmartes71
      - Jmartes71 posted a topic in Coping with Celiac Disease
      0

      Curious question

      So I've been dealing with chasing the name celiac because of my body actively dealing with health issues related to celiac though not eating. Diagnosed in 1994 before foods eliminated from diet. After 25 years with former pcp I googled celiac specialist and she wasn't because of what ive been through. I wanted my results to be sent to my pcp but nothing was...
    2. Amy Barnett
      - Amy Barnett posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Question

      What is the best liquid multivitamin for celiac disease?
    3. Scott Adams
      0

      Quick Gluten-Free Shrimp Stir-Fry With Crisp Vegetables

    4. Jmartes71
      - Jmartes71 posted a topic in Coping with Celiac Disease
      0

      Alarming

      I've noticed with my age and menopause my smell for bread gives me severe migraines and I know this.Its alarming that there are all these fabulous bakeries, sandwich places pizza places popping up in confined areas.Just the other day I suffered a migraine after I got done with my mri when a guy with a brown paper bag walk in front of me and I smelled that...
    5. Maggieinsc
      - Maggieinsc commented on Scott Adams's article in Winter 2026 Issue
      5

      Celiac Disease and Longevity: Can Treatment and Healing Improve Long-Term Survival?

      Thanks for the prompt reply. Interesting that blood test could be caused by other things. I am sure Dr Fincher will get to the bottom of it. I know he ate nowhere near that amt of gluten before the endoscope. Always interested in any new info abt celiac. U can not trust what is said on fb- That would be a piece of bread a day. He didn't even make that...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,321
    • Most Online (within 30 mins)
      7,748
    Yvonne Thomas
    Newest Member
    Yvonne Thomas
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Jmartes71
      Curious question

      By Jmartes71 · Posted

      So I've been dealing with chasing the name celiac because of my body actively dealing with health issues related to celiac though not eating. Diagnosed in 1994 before foods eliminated from diet. After 25 years with former pcp I googled celiac specialist and she wasn't because of what ive been through. I wanted my results to be sent to my pcp but nothing was sent.I have email copies.I did one zoom call with np with team member from celiac specialist in Nov 2025 and she asked me why I wanted to know why I wanted the celiac diagnosis so bad, I sad I don't, its my life and I need revalidaion because its affecting me.KB stated well it shows you are.I asked then why am I going through all this.I was labeled unruly. Its been a celiac circus and medical has caused anxiety and depression no fault to my own other than being born with bad genetics. How is it legal for medical professionals to gaslight patients that are with an ailment coming for help to be downplayed? KB put in my records that she personally spent 120min with me and I think the zoom call was discussing celiac 80 min ONE ZOOM call.SHE is responsible for not explaining to my pcp about celiac disease am I right?
    • Amy Barnett
      Question

      By Amy Barnett · Posted

      What is the best liquid multivitamin for celiac disease?
    • Jmartes71
      Alarming

      By Jmartes71 · Posted

      I've noticed with my age and menopause my smell for bread gives me severe migraines and I know this.Its alarming that there are all these fabulous bakeries, sandwich places pizza places popping up in confined areas.Just the other day I suffered a migraine after I got done with my mri when a guy with a brown paper bag walk in front of me and I smelled that fresh dough bread with tuna, I got a migraine when we got home.I hate im that sensitive. Its alarming these places are popping up in airports as well.I just saw on the news that the airport ( can't remember which  one)was going to have a fabulous smelling bakery. Not for sensitive celiacs, this can alter their health during their travel which isn't safe. More awareness really NEEDS to be promoted, so much more than just a food consumption!FYI I did write to Stanislaus to let them know my thoughts on the medical field not knowing much about celiac and how it affects one.I also did message my gi the 3 specialist names that was given on previous post on questions on celiac. I pray its not on deaf door.
    • xxnonamexx
      Gut nutrition supplements?

      By xxnonamexx · Posted

      Thanks for the info. I have been taking the ones you recommended but when I saw this I was curious if it was something else to add to the journey Thank  
    • Jane07
      Gluten free Yogurt suggest

      By Jane07 · Posted

      I used to be able to get the Rivera yougut i havent been able to get it lately. I like getting it did say it did say gluten free. I just looking for a good yogurt that gluten free that i can add some fruit and nuts to any suggestion would be helpful  thanks
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.