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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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      High DGP-A with normal IGA

      By knitty kitty · Posted

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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

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      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
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      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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