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

Still Showing Damage

Katie876

Recommended Posts

Katie876 Newbie
Katie876
Posted

I was diagnosed in the beginning of Dec with celiac. I just got my endoscopy yesterday, gastrointologist was expecting not to find any damage but I still do. Is this normal and how long could it take to heal? I'm still waiting for the biopsy results. I'm confused what the biopsy results will tell us? All 4 of the lab tests came back positive and there is obviously still damage. Why did they have to do a biopsy too? Thanks

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

I was diagnosed in the beginning of Dec with celiac. I just got my endoscopy yesterday, gastrointologist was expecting not to find any damage but I still do. Is this normal and how long could it take to heal? I'm still waiting for the biopsy results. I'm confused what the biopsy results will tell us? All 4 of the lab tests came back positive and there is obviously still damage. Why did they have to do a biopsy too? Thanks

 

 

I don't think I am understanding?  Why would the GI do an endo a month after the first one?  It usually takes longer than a month of gluten free to heal the damage.  Heck, it takes at least a month to get the gluten-free diet figured out and perfected.  

 

 

Open Original Shared Link

 

How long does it take for the villi to heal themselves?

The amount of time it takes the villi to heal themselves is highly variable. It can take from 1-2 weeks or several years for most. Unfortunately, complete healing never occurs for some.

 
 
How often should follow-up testing occur?

New celiacs should receive follow-up testing twice in the first year after their diagnosis. The first appointment should occur 3-6 months after the diagnosis, and the second should occur after 1 year on a gluten-free diet. After that, a celiac should receive follow-up testing on a yearly basis. We recommend checking both tTG and DGP (Deamidated gliadin peptides) at each screening.

Katie876 Newbie
Katie876
Posted
  • Author

This was my 1st endoscopy yesterday. I got my blood results back in the beginning of December. My dr wanted me off gluten that day. The 1st I could get in to do the endoscopy was yesterday. They figured bc I've been gluten-free for 2 months they shouldn't have seen as much damage as there was. I'm new to this so I'm still learning:)

cristiana Veteran
cristiana
Posted

Hi Katie

 

I think Kareng is right - it varies so much.  I wouldn't be too anxious about it.  I have never had a second follow up endoscopy although I'd quite like one just because I'd like to see how much I have improved with all my hard work (minus a few accidental glutenings) after all these months.

 

I was really in a bad way at diagnosis and really only recently have I decided  my gut must be better as I am putting on weight, suddenly, really easily. :unsure:   So it has been really a two years for me.

 

We are all still learning....

cristiana Veteran
cristiana
Posted

Oh .... forgot to add this.

 

This explains the biopsy bit.  This tells the experts how much the villi have been damaged.  

 

Open Original Shared Link

 

(PS excuse English spelling of celiac!  I still don't know why we spell it differently!)

GFinDC Veteran
GFinDC
Posted

That's pretty much the standard process, doing blood antibody tests first and then an endoscopy.  Usually the person is supposed to keep eating gluten until the endoscopy is done though.

  • 2 months later...
Posterboy Mentor
Posterboy
Posted

Still Showing Damage,

 

Biopsy are the old school way to test for gluten free dietary compliance.  The villi however take most people 1 year approx to heal the majority of the way.  2 years are needed for most people(if no cheating occurs hence the 2nd biopsy) for complete remission.  If the Celiac is not in remission in 2 years it is consider refractory (non-healing) type.

 

Blood serology in the short term 1-6 months are much easier and possibly more accurate with gluten antibodies going down dramaticlly with in one month.  It sounds like a blood exam was called for here.  At 6 months if you are adhering to strict gluten-free diet most all the remaingin antibodies for gluten go away.

 

See above how villi healing takes twice to four times as long to heal to pass biopsy (gold standard) for Celiac Disease.

 

But if there is no gluten and/or ie antibodies the body will begin to heal as soon as a month as evidenced by the dramatic drop in blood (serology) antibodies indicate by a 2nd follow up blood panel.

 

Posterboy,

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

Celiac.com Sponsor (A8-M):


Archived

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

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


  • Member Statistics

    • Total Members
      131,171
    • Most Online (within 30 mins)
      7,748
    kyle68j
    Newest Member
    kyle68j
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • DAR girl
      Celiac and allergic to common subs and adds in prepared foods

      By DAR girl · Posted

      Looking for help sourcing gluten-free products that do not contain potato or corn derived ingredients. I have other autoimmune conditions (Psoriatic Arthritis and Sjogrens) so I’m looking for prepared foods as I have fatigue and cannot devote a lot of time to baking my own treats. 
    • Scott Adams
      Disregarded

      By Scott Adams · Posted

      I am so sorry you're going through this. It's completely understandable to feel frustrated, stressed, and disregarded after such a long and difficult health journey. It's exhausting to constantly advocate for yourself, especially when you're dealing with so many symptoms and positive diagnoses like SIBO, while still feeling unwell. The fact that you have been diligently following the diet without relief is a clear sign that something else is going on, and your doctors should be investigating other causes or complications, not dismissing your very real suffering. 
    • Oldturdle
      Paying for my own Celiac screening at WalkInLab so a positive result doesn’t become part of my medical history

      By Oldturdle · Posted

      It is just so sad that health care in the United States has come to this.  Health insurance should be available to everyone, not just the healthy or the rich.  My heart goes out to you.  I would not hesitate to have the test and pay for it myself.  My big concern would be how you could keep the results truly private.  I am sure that ultimately, you could not.  A.I. is getting more and more pervasive, and all data is available somewhere.  I don't know if you could give a fake name, or pay for your test with cash.  I certainly would not disclose any positive results on a private insurance application.  As I understand it, for an official diagnosis, an MD needs to review your labs and make the call.  If you end up in the ER, or some other situation, just request a gluten free diet, and say it is because you feel better when you don't eat gluten.      Hang in there, though.  Medicare is not that far away for you, and it will remove a lot of stress from your health care concerns.  You will even be able to "come out of the closet" about being Celiac!
    • plumbago
      Paying for my own Celiac screening at WalkInLab so a positive result doesn’t become part of my medical history

      By plumbago · Posted

      Yes, I've posted a few times about two companies: Request a Test and Ulta Labs. Also, pretty much we can all request any test we want (with the possible exception of the N protein Covid test and I'm sure a couple of others) with Lab Corp (or Pixel by Lab Corp) and Quest. I much prefer Lab Corp for their professionalism, ease of service and having it together administratively, at least in DC. And just so you know, Request a Test uses Lab Corp and Quest anyway, while Ulta Labs uses only Quest. Ulta Labs is cheaper than Request a Test, but I am tired of dealing with Quest, so I don't use them so much.
    • Scott Adams
      Does Dailymed.nlm.nih.gov site have filters for gluten?

      By Scott Adams · Posted

      PS - I think you meant this site, but I don't believe it has been updated in years: http://glutenfreedrugs.com/ so it is best to use: You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
×
×
  • Create New...