Results Are Back From My Capsule Endoscopy!

[Sis]

Hi there everyone. I just got my results back today from my third capsule endoscopy and I have mixed feelings about what it all means. The good news is that my intestines have almost completely healed from being on the Gluten Free diet...so that it great news, but they found a couple of other things that I am not sure if I should be concerned about or not??? The Dr. said that there was a small ulcer and a small erosion (sp) in the small intestine. They don't have a reason for these things to be there and they were not there a few months ago when I had the Capsule before. Has anyone had these and is it something I should worry about? I am still haven't pain unrelated to the celiac but no one can seem to figure out the source of the problem. Any words of advice would be helpful.

Sis

[mart]

Sis, what did the doctor tell you about the findings? Did he seem concerned at all? Maybe it's no big deal(hopefully). Also, how do you know your pain is unrelated to your celiac? Lots of celiacs are gluten-free and still have pain. Quick question: what was that capsule endoscopy like? The doc wants to do one on my son, but he's only 8!

[jennyj]

When I had my endoscopy they found small erosions and they called them AVM's of the small intestine. This was before my dx.

[Sis]

Sis, what did the doctor tell you about the findings? Did he seem concerned at all? Maybe it's no big deal(hopefully). Also, how do you know your pain is unrelated to your celiac? Lots of celiacs are gluten-free and still have pain. Quick question: what was that capsule endoscopy like? The doc wants to do one on my son, but he's only 8!

Well, the doctor did not go into detail because unfortunately he got my answering machine and that was really all he left on his message but I do have an appointment set up with him the 2nd week in July so we will probably discuss more then. The pain I get with celiac whenever I have been "glutened" is always the same for me..it kind of feels like I really bad stomach bug with stomach cramping etc. But this other pain I get is excruiating to the point where I actually curl up into fetal position and either wait until it passes (which can be hours) or take something for the pain or worse case go to the ER. The doctor did say that I have had something called Intususseption(sp) of the small bowel show up on several CT scans but they can't find a trigger for it. It is supposed to be really rare for an adult. My Celiac has almost completly healed from the diet and I have tried the elimination thing just to be sure I didn't have an intolerance of some other kind but it does not look like that is the case. The Dr. and I both are baffled at this point.

Sorry for the long in depth response. I get carried away sometimes.

Well, the doctor did not go into detail because unfortunately he got my answering machine and that was really all he left on his message but I do have an appointment set up with him the 2nd week in July so we will probably discuss more then. The pain I get with celiac whenever I have been "glutened" is always the same for me..it kind of feels like I really bad stomach bug with stomach cramping etc. But this other pain I get is excruiating to the point where I actually curl up into fetal position and either wait until it passes (which can be hours) or take something for the pain or worse case go to the ER. The doctor did say that I have had something called Intususseption(sp) of the small bowel show up on several CT scans but they can't find a trigger for it. It is supposed to be really rare for an adult. My Celiac has almost completly healed from the diet and I have tried the elimination thing just to be sure I didn't have an intolerance of some other kind but it does not look like that is the case. The Dr. and I both are baffled at this point.

Sorry for the long in depth response. I get carried away sometimes.

The Capsule Endoscopy for me was great compared to the regular endoscopy. All I had to do was fast after 10 pm the night before the procedure, go to the hospital, swallow the camera pill, get hooked up to a bunch of electrodes and a harness, where it around for most of the day, then return for them to take everything off and it was done. The worst thing about it for me was having to wear that stuff all day when it was hot. It looks like a back brace with a walkman stuck to it. The nurse freaked me out though...she told me to make sure that I did not go into any federal buildings or banks while I had the stuff on because they may think I had a bomb attached to me!!! I think it would be much easier on your child to have the Capsule Endoscopy rather than the regular endoscopy.

When I had my endoscopy they found small erosions and they called them AVM's of the small intestine. This was before my dx.

Did they have to do anything to treat it or did it go away on its own?

[jennyj]

The doctors at the time said nothing about celiac and said I would have to learn to deal with the D, and pain. I did not go back to that hospital.

[Guest greengirl]

I had a capsule endoscopy a few months ago and they found a series of ulcerations in my small intestine. The doctor thought maybe it was Crohn's. My colon is clear, though, and my diarrhea improved immensely upon going gluten free. He said it's possible that celiac could be the cause, but he said it would be rare to have both Celiac and Crohn's. Since I have 2 copies of the celiac gene, I think it is more likely to be celiac. I haven't had a follow-up capsule endoscopy so I am curious to see if there's been improvement after almost 6 mo. gluten free.

In your case, it is strange that the ulcer and erosion showed up after going gluten free, but maybe they missed it the first time around?? Or maybe you just need a longer period gluten free to resolve all the complications. And I'm sure the ulcer would take much longer to heal than the villi. I found this article about intussusception and they mention it being associated with lesions and celiac.

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Christine

[Sis]

I had a capsule endoscopy a few months ago and they found a series of ulcerations in my small intestine. The doctor thought maybe it was Crohn's. My colon is clear, though, and my diarrhea improved immensely upon going gluten free. He said it's possible that celiac could be the cause, but he said it would be rare to have both Celiac and Crohn's. Since I have 2 copies of the celiac gene, I think it is more likely to be celiac. I haven't had a follow-up capsule endoscopy so I am curious to see if there's been improvement after almost 6 mo. gluten free.

In your case, it is strange that the ulcer and erosion showed up after going gluten free, but maybe they missed it the first time around?? Or maybe you just need a longer period gluten free to resolve all the complications. And I'm sure the ulcer would take much longer to heal than the villi. I found this article about intussusception and they mention it being associated with lesions and celiac.

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Christine

Christine,

Thank you so much for showing me that article. It all sounds very similar to what I have been experiencing. I just hope that my bouts with severe abdominal pain go away soon. I am a little discouraged though because I have the Capsule Endoscopy that says without a doubt that there is very little evidence of the Celiac Disease and that most of the damage was gone besides the ulcer and erosion. Most of my symptoms associated with the Celiac have disappeared and I can even eat ice cream again with no problems....but I still have this other chronic severe pain that almost has a definite pattern to it that we can't pinpoint a cause for. I know it's not all in my head. I just keep sitting here hoping that someone will figue out what is wrong with me so it can be fixed and I can go on with my life. Thanks for the opportunity to vent a little. This is all so frustrating for me. Thanks again for the article. I saved it to my favorites so I can let my Dr. look at it at the next visit.

Thanks,

Sis