Still Showing Damage

[Katie876]

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

[kareng]

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.  

 

 

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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]

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]

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.    So it has been really a two years for me.

 

We are all still learning....

[cristiana]

Oh .... forgot to add this.

 

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

 

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

[GFinDC]

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.

[Posterboy]

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,