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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,207
    • Most Online (within 30 mins)
      7,748
    WAB19
    Newest Member
    WAB19
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By trents · Posted

      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Scott Adams · Posted

      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
    • Xravith
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Xravith · Posted

      I'm very confused... My blood test came out negative, I checked all antibodies. I suppose my Total IgA levels are normal (132 mg/dl), so the test should be reliable. Still, I'm not relieved as I can't tolerate even a single biscuit. I need to talk to my doctor about whether a duodenal biopsy is necessary. But it is really possible to have intestinal damage despite having a seronegative results? I have really strong symptoms, and I don't want to keep skipping university lectures or being bedridden at home.
    • Scott Adams
      CT with contrast.

      By Scott Adams · Posted

      They may want to also eliminate other possible causes for your symptoms/issues and are doing additional tests.  Here is info about blood tests for celiac disease--if positive an endoscopy where biopsies of your intestinal villi are taken to confirm is the typical follow up.    
    • Scott Adams
      New labs are now very elevated

      By Scott Adams · Posted

      In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease--and you are above that level. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! May I ask why you've had so many past tTg-IgA tests done, and many of them seem to have been done 3 times during short time intervals?    
×
×
  • 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.