when do you recommend follow up endoscopy?

[MADMOM]

so i am 15 months into my celiac and gluten-free journey feeling so much better bloodwork last i checked was almost in normal ranges and i’ve gained 15 pounds - not too thrilled about that but i feel better -overall - iron levels have dramatically improved and my cbc count was finally perfect - my GI had initially recommended doing a followup endoscopy after 1 year but after so much reading on this blog and being dx at 48 i feel like 2 years makes more sense!  any advice from anyone on here??- 

[Scott Adams]

It sounds like you have a great doctor who is doing all of the right follow up work, which is actually pretty unusual, as many people here have shared complaints about the lack of follow up work they've received after being diagnosed. I think you should follow what your doctor recommends, unless you're concerned about getting an endoscopy again. I do know that they are dealing with issues associated with contaminated endoscopes, so personally you may want to wait until that is worked out. When I last read about it the new recommendation is using a disposable type, which is not yet available.

You can read more about this issue here:

https://www.celiac.com/search/?q=contaminated&quick=1&type=cms_records2&search_in=titles

[MADMOM]

2 minutes ago, Scott Adams said:

It sounds like you have a great doctor who is doing all of the right follow up work, which is actually pretty unusual, as many people here have shared complaints about the lack of follow up work they've received after being diagnosed. I think you should follow what your doctor recommends, unless you're concerned about getting an endoscopy again. I do know that they are dealing with issues associated with contaminated endoscopes, so personally you may want to wait until that is worked out. When I last read about it the new recommendation is using a disposable type, which is not yet available.

You can read more about this issue here:

https://www.celiac.com/search/?q=contaminated&quick=1&type=cms_records2&search_in=titles

yep i feel like you might be right but knowing that at my age it takes longer to heal i wanted to wait it out a bit - im feeling so much better i don’t feel there is a concern to do it yet but 💁🏻‍♀️

[MADMOM]

On 4/12/2022 at 5:59 PM, Scott Adams said:

It sounds like you have a great doctor who is doing all of the right follow up work, which is actually pretty unusual, as many people here have shared complaints about the lack of follow up work they've received after being diagnosed. I think you should follow what your doctor recommends, unless you're concerned about getting an endoscopy again. I do know that they are dealing with issues associated with contaminated endoscopes, so personally you may want to wait until that is worked out. When I last read about it the new recommendation is using a disposable type, which is not yet available.

You can read more about this issue here:

https://www.celiac.com/search/?q=contaminated&quick=1&type=cms_records2&search_in=titles

when did you go for your first followup post dx?  should i wait for the 2 year mark ?  

[Scott Adams]

Most of the research we've summarized indicates that the risks associated with celiac disease, for example the higher risk of intestinal lymphoma, typically occur within a year of diagnosis. While the overall risk for it is still low, my thought on this would be that if you ever get a follow up biopsy, then it might make sense to get it sooner rather than later.

[MADMOM]

6 minutes ago, Scott Adams said:

Most of the research we've summarized indicates that the risks associated with celiac disease, for example the higher risk of intestinal lymphoma, typically occur within a year of diagnosis. While the overall risk for it is still low, my thought on this would be that if you ever get

7 minutes ago, Scott Adams said:

Most of the research we've summarized indicates that the risks associated with celiac disease, for example the higher risk of intestinal lymphoma, typically occur within a year of diagnosis. While the overall risk for it is still low, my thought on this would be that if you ever get a follow up biopsy, then it might make sense to get it sooner rather than later.

a follow up biopsy, then it might make sense to get it sooner rather than later.

on my initial biopsy nothing was even pre c dr went in deeper than normal and all biopsies were good - i was so scared he reiterated it over and over that there was nothing even pre dangerous so is it still high of a chance that after 16 months of gh the chances are still high? 

[MADMOM]

2 minutes ago, MADMOM said:

on my initial biopsy nothing was even pre c dr went in deeper than normal and all biopsies were good - i was so scared he reiterated it over and over that there was nothing even pre dangerous so is it still high of a chance that after 16 months of gh the chances are still high? 

i meant after 16 months of eating clean the chances are still high? 

[Scott Adams]

The risk factors are still low overall, but you were asking whether or not you should wait until the 2 year mark to get a follow up endoscopy, and my though was why wait if your doctor recommends it now? 

[MADMOM]

14 minutes ago, Scott Adams said:

The risk factors are still low overall, but you were asking whether or not you should wait until the 2 year mark to get a follow up endoscopy, and my though was why wait if your doctor recommends it now? 

oh ok sorry my anxiety focuses on that bad word - oh only because u had mentioned that generally a person my age 49 can take up to 2 years to heal so u figured why not just wait but i may do it soon now im paranoid 

[Scott Adams]

So your call here, and sorry to worry you. For what it's worth I've never had a follow up endoscopy, and had serious villous atrophy, but none of my doctors every offered any follow up. It sounds like your doctor is doing things by the book, with is refreshing to hear, considering the number of stories we hear here in which celiacs get little or no follow up care...not to mention the research that backs this up:

 

 

[MADMOM]

9 minutes ago, Scott Adams said:

So your call here, and sorry to worry you. For what it's worth I've never had a follow up endoscopy, and had serious villous atrophy, but none of my doctors every offered any follow up. It sounds like your doctor is doing things by the book, with is refreshing to hear, considering the number of stories we hear here in which celiacs get little or no follow up care...not to mention the research that backs this up:

 

 

my doctor is very caring i’m lucky for sure - so if i may ask - how do you know that you healed then? 

[Scott Adams]

I gained a fair amount of weight over the 2-3 years after I went gluten-free, which I wasn't able to do before going gluten-free. Nearly all my symptoms went away during that time as well. 

[MADMOM]

21 minutes ago, Scott Adams said:

I gained a fair amount of weight over the 2-3 years after I went gluten-free, which I wasn't able to do before going gluten-free. Nearly all my symptoms went away during that time as well. 

was that a sign that your villi was healing because i’ve gained 15 pounds since going gluten-free - 16 months and my symptoms have subsided almost completely 

[Scott Adams]

I think those would be definite signs of healing, and this was much like what happened in my case as well.

[MADMOM]

i’m somewhat scared to do a followup endoscopy because i don’t want to hear anything but i’m healing - ❤️