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Followup Endoscopy

sillyyak

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sillyyak Enthusiast
sillyyak
Posted

Has anyone had a follow-up endo? I am reading a lot of postings that suggest not many people have had one. What have you done, or not? And, why?

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plantime Contributor
plantime
Posted

I am not having a followup endo. A- I can't afford it, and B- my GI did not recommend it, since I knew what I had to do and was doing it. He said all he could do with a followup is tell me how much I have healed, and I can learn that just by how I feel.

hez Enthusiast
hez
Posted

My gi doc would like to do a follow up endo. I am on the fence about it. The doc would like to do it to see how much I have healed and what the villi look like (standing tall or blunt looking). I know I must have healed some since I feel so much better. However, it would be interesting to see the difference between the two scopes.

Still not sure what I will do.

Hez

Random Guy Apprentice
Random Guy
Posted

my GI recommended 3 follow up endoscopys within the year. I haven't given too much though to not following that recomendation.

ravenwoodglass Mentor
ravenwoodglass
Posted
Has anyone had a follow-up endo? I am reading a lot of postings that suggest not many people have had one. What have you done, or not? And, why?

My son and I did not because our symptom relief was so obvious - although I tried. The gluten challange made me so sick I couldn't get to the procedure. My DD did have it done. It was not a difficult procedure for her and there was not much of a prep. Her biopsys showed begining changes in the villi. Her main symptoms were GERD, nausea and vomiting and psychological she had not gotten to the constant D stage yet. Most US doctors really want to do these. Some of us choose to and some don't. I wish I could be of more help.

jenvan Collaborator
jenvan
Posted

I am actually having one tommorrow! My one-year. I am having it b/c to me it is important to know what the state of my SI is. I have had some symptom improvement, but after one year, don't feel fantabulous.... so it is another tool for me to evaulate my progress and to learn more so I can help others. I am going to post my results when I get them.

skoki-mom Explorer
skoki-mom
Posted

I am having one in June. It is the only way I know if this diet is doing anything. I have no symptoms, never did, the once or twice I know for a fact I made a mistake and ate gluten, I had no reaction at all. I just need to know what is going on in there. I will be 10 months gluten-free when I get my next scope.

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jerseyangel Proficient
jerseyangel
Posted
I am actually having one tommorrow! My one-year. I am having it b/c to me it is important to know what the state of my SI is. I have had some symptom improvement, but after one year, don't feel fantabulous.... so it is another tool for me to evaulate my progress and to learn more so I can help others. I am going to post my results when I get them.

Jen--Best of luck with everything tomorrow! :)

Susan123 Rookie
Susan123
Posted

I had one 1 year later but I never showed damage to begin with just antibodies IgA. So nothing changed for me. IT was after a 1 year gluten challenge.

julie5914 Contributor
julie5914
Posted

I'm 8 months out. I will probably get my blood retested at 1 year out (had it tested at 6 months and it was still high). If it is still high then, I will consider endoscopy, though it will be my first. I still have symptoms, but I've improved.

2Boys4Me Enthusiast
2Boys4Me
Posted

My younger son is the celiac in our family. He has a follow up with pediatric GI doctor March 7th, and I am going to ask for a blood test. Ty doesn't have any symptoms (that I am aware of - I can't feel what he feels) so for me the results of the blood test will at least indicate if we've been doing a good job keeping him gluten-free. Depending on the results we will maintain status quo around here, or make some big changes. His first results were given to us in a ratio. Less than 1 : 2.5 was negative (Mom, Dad, big brother) and Ty's blood results at diagnosis in August 2005 were 1 : 650 :o:blink: ! Yikes.

At the first follow up the doctor did indicate that he would do a follow up endoscopy if we really wanted him to, but I felt like he figured the blood test would be a good indicator and certainly less invasive.

Guest nini
Guest nini
Posted

I didn't have a follow up endoscopy because I didn't have a initial endoscope to begin with! I was dx'ed by blood test results and positive dietary response. My dr. did not recommend a biopsy, and didn't recommend a follow up biopsy. I agree. I think they are invasive. In the case where someone doesn't have any symptoms, it might make sense to get a follow up biopsy, but I would think that blood tests would be sufficient to monitor compliance with the diet.

Moongirl Community Regular
Moongirl
Posted

My doc def said to do a blood test follow up, but he only suggested the one year follow up endo if there isnt much change in my weight or blood test. So I guess every person has to use their personal judgement. Honestly, I wouldnt just do what your doctor recommends all the time, you are your own doctor B)

jenvan Collaborator
jenvan
Posted

Meant to post this article I thought was good on the merits of follow-up biopsies: https://www.celiac.com/st_prod.html?p_prodid=1280

jerseyangel Proficient
jerseyangel
Posted
Meant to post this article I thought was good on the merits of follow-up biopsies: https://www.celiac.com/st_prod.html?p_prodid=1280

Jen--Didn't you have yours yesterday? Good to see you back up and running--I trust all went well?

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      I realized it is actually important to get an official diagnosis because then insurance can cover bone density testing and other lab work to see if any further damage has been done because of it. Also, if hospitalized for whatever reason, I have the right to gluten-free food if I am officially celiac. I guess it gives me some legal protections. Plus, I have 4 kids, and I really want to know. If I really do have it then they may have increased risk. 
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