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Follow-up Upper Endoscopy

carriecraig

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carriecraig Enthusiast
carriecraig
Posted

For those who were positively diagnosed with celiac disease through endoscopy: I'm just wondering how many of you had a follow-up endoscopy to see how well you were doing/healing with being gluten-free? Is it really needed?

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skoki-mom Explorer
skoki-mom
Posted
For those who were positively diagnosed with celiac disease through endoscopy: I'm just wondering how many of you had a follow-up endoscopy to see how well you were doing/healing with being gluten-free? Is it really needed?

Mine isn't booked yet, but I will be getting a follow up scope. I need one because I am asymptomatic. I am making every effort to be gluten-free, but without reactive symptoms, I really don't know it is going for me. I actaullyam really looking forward to this scope because I am hoping to see some positive changes!

lovegrov Collaborator
lovegrov
Posted

The standard advice these days is to repeat blood tests and if they're negative, there's no need for a follow-up endoscopy. I am not, however, a celiac expert or a doctor, and I would always suggest you listen to your caregiver (well, most of the time anyway).

richard

mytummyhurts Contributor
mytummyhurts
Posted

I just got a notice in the mail to set up for a year follow up endoscopy. But I just got done paying $600 for last year's. If it cost me less or no money then I probably would do it just out of curiousity.

Rikki Tikki Explorer
Rikki Tikki
Posted

Lori:

Don't get frustrated. It took me about 3 years to really feel good again, and for about 2 1/2 years of that I didn't cheat. It was after the doctor put me on steriods for something else that I really noticed an improvement. I don't know if there is a connection or not.

Don't give up or give in, I am here to tell you it will get better!

nikki-uk Enthusiast
nikki-uk
Posted
Lori:

Don't get frustrated. It took me about 3 years to really feel good again, and for about 2 1/2 years of that I didn't cheat. It was after the doctor put me on steriods for something else that I really noticed an improvement. I don't know if there is a connection or not.

Don't give up or give in, I am here to tell you it will get better!

My husbands had 2 biopsies since diagnosis a year ago.

He first repeat biopsy showed limited improvement after 6months-(he never cheated)so doc put him on steroids.These seem to have improved things greatly.

Hubbies nearly off the steroids now-and has a far better appetite than he's had in years,and we're waiting for results of 2nd biopsy.I'd bet it shows improvement.

BTW,his bloods were negative,-so repeat bloods wouldn't have been any indicator of how well he was healing.

Guest nini
Guest nini
Posted

if you are asymptomatic, then a follow up biopsy would be a good way to determine if the villi are healing, but my personal opinion is that as long as your health is continuing to improve then the follow up biopsy is unneccessary. My Dr. even told me that the initial biopsy wasn't called for because my bloodwork was VERY positive. And the only reason for me to have the biopsy would be if my health did not improve on the gluten-free diet. My health did improve dramatically, so at my follow up appt. he said that confirmed the dx and I did not need the biopsy.

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  • 2 weeks later...
Guest Mari
Guest Mari
Posted

I am also asymptomatic, and was told by my nutritionist that I would just need to get my ttg blood test every year, and that was a good indication of whether or not I was gluten free.

As an aside, it's nice to be asymptomatic, because we don't have to deal with all the sickness and pain, but it is really frustrating because we don't know whether we are really gluten-free or not!

Moongirl Community Regular
Moongirl
Posted

my GI told me that a follow up endoscopy really wasnt neccessary as long as i follow the diet and saw improvements, such as weight gain, then he said he didnt really have the need to do it again.

But blood tests may be an alternative route. Best advice he said is that everyones body is different and you cant put a time on when u will "feel better" As long as u see some sort of improvement that was his main concern. So dont worry about 6 months from now, take everyday as it comes. :)

par18 Apprentice
par18
Posted

I recovered nicely in 7 months and don't feel any symptoms on gluten-free diet. I don't think a scope will show me any more than what my body is telling me and that is I feel great and have gained back all lost weight and then some. Maybe a once a year blood test for other things. Each person is different but I would rather spend the money on the diet.

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