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Can The Pill-cam Diagnose Celiac?

Bethinjapan

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Bethinjapan Rookie
Bethinjapan
Posted

Okay, so if you read my previous post you know, we live in Japan, and I've been trying to get tested for celiac. This is much easier said than done, here. However, through some great advice from some of you, I found a doctor who gave me a "letter of introduction" with regard to celiac (the golden ticket apparently), a referral to be seen by a GI and get an endoscopy. I just got back from the hospital from that GI visit. Apparently an endoscope is not even standard equipment in the hospitals here, even the nice, big, new hospital in our town. So Monday, he's sending me to a hospital in Tokyo for a capsule camera. I'm very excited and encouraged that they're now listening to me and trying to help me find the answers I'm looking for, but I'm just a little worried that this still isn't the right method. The kind, personal GI very honestly told me today that in forty years of practice, I'm the first person he's ever seen for celiac. He was even considerate enough to ask if I would be able to find gluten free foods in Japan!! Pretty thoughtful, I thought! I'm just a tad lacking in trust, with the total lack of experience with this disease. I asked if the camera would be able to see the villi and he assured me it would. Is he right?

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cyberprof Enthusiast
cyberprof
Posted
Okay, so if you read my previous post you know, we live in Japan, and I've been trying to get tested for celiac. This is much easier said than done, here. However, through some great advice from some of you, I found a doctor who gave me a "letter of introduction" with regard to celiac (the golden ticket apparently), a referral to be seen by a GI and get an endoscopy. I just got back from the hospital from that GI visit. Apparently an endoscope is not even standard equipment in the hospitals here, even the nice, big, new hospital in our town. So Monday, he's sending me to a hospital in Tokyo for a capsule camera. I'm very excited and encouraged that they're now listening to me and trying to help me find the answers I'm looking for, but I'm just a little worried that this still isn't the right method. The kind, personal GI very honestly told me today that in forty years of practice, I'm the first person he's ever seen for celiac. He was even considerate enough to ask if I would be able to find gluten free foods in Japan!! Pretty thoughtful, I thought! I'm just a tad lacking in trust, with the total lack of experience with this disease. I asked if the camera would be able to see the villi and he assured me it would. Is he right?

I think that a capsule endoscopy is one of the cutting-edge diagnosis methods, as it can show more of the small intestine than can be seen in a normal/standard endoscopy. It certainly is better than nothing. There were some comments on this board about how it is the method used on hard-to-diagnose cases. If you do a seach for "capsule endoscopy" or some variation you might find some info.

Apparently Asians don't normally have the gene for celiac, so it is likely the doc in Japan (thanks to KenLove) hasn't seen many. I don't think that matters...maybe that doc would be more open to new ideas and new research.

Best of luck to you! I hope you get a diagnosis or an answer to your questions.

AMQmom Explorer
AMQmom
Posted

My sister lives in the Los Angeles area (California) and just had a pill cam. She said that her doctor was in heaven - the camera showed so much celiac damage that she is a great study case for them. It is a great way for them to see in detail what is going on in your intestines. She did have to wear a monitoring device and they suspected celiac before the cam. The results made her realize the damage done and truly go gluten free (phew - I am the little sister and my girls and I are already celiac and gluten free). I hope that your procedure helps you and I do know that they use the pill cams over here.

LDJofDenver Apprentice
LDJofDenver
Posted

Hello again. I am so glad to hear that you are making progress on getting a diagnosis. Good work. I've read a lot about the capsule endoscopy in regards to celiac diagnosis, so I think you are on the right path.

Good luck to you, keep us posted.

Gemini Experienced
Gemini
Posted
My sister lives in the Los Angeles area (California) and just had a pill cam. She said that her doctor was in heaven - the camera showed so much celiac damage that she is a great study case for them. It is a great way for them to see in detail what is going on in your intestines. She did have to wear a monitoring device and they suspected celiac before the cam. The results made her realize the damage done and truly go gluten free (phew - I am the little sister and my girls and I are already celiac and gluten free). I hope that your procedure helps you and I do know that they use the pill cams over here.

May I ask what the prep is for the pill endoscopy? Do they look at the small intestine only or does it still snap away throughout the whole colon?

I ask because I was diagnosed through blood work and refused the biopsy because I was so sick at the time of diagnosis I couldn't face the prospect of having them shove a tube down my throat. I had a phenomenal recovery with the diet and am doing really well but my doctor expressed the wish that I would have a follow-up endoscopy to see how well I have healed and the degree of healing. I still am not too keen on a standard endoscopy but swallowing a pill that takes pictures sounds awesome and much better than the other.

Thanks!

AMQmom Explorer
AMQmom
Posted

I'll try to get in touch with my sister this week and ask her those questions. I remember her telling me that she swallowed very large "pill" and took liquids they provided (I think) - I do not remember her talking about any other endoscopy....I'll check. They got images from the device that she kept on her (transmitter). I think that her hardest part was swallowing it. Sounded cool.

Bethinjapan Rookie
Bethinjapan
Posted
  • Author

Huge thanks for all your replies! This site has been so great for me! I've been soaking up all the valuable information! I would also be interested in how that all went with your sister! I've looked it up online and learned that you have to fast from midnight the night before, usually you go in in the morning and they give you a belt with a receiver of some sort to wear for the eight hours that the pics are being taken. Then you go back to return that device from which they retrieve the images. It really does sound a lot less intrusive than an endoscope, so I'm really hoping it will be sufficient and no further testing with be required!

LDJofDenver, the youtube link that you posted in my previous post was such a help! I actually sent a message to that person and she is so helpful, even sending me contact info for a possible doctor!! And I'm so happy to learn that there are a few things here than I can get locally! I have been monitoring my diet very closely and am convinced gluten is to blame for a lot of my problems, so regardless of what they find, I will be gluten free afterward.

Thanks again for all the help! :)

Beth

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cyberprof Enthusiast
cyberprof
Posted
Huge thanks for all your replies! This site has been so great for me! I've been soaking up all the valuable information! I would also be interested in how that all went with your sister! I've looked it up online and learned that you have to fast from midnight the night before, usually you go in in the morning and they give you a belt with a receiver of some sort to wear for the eight hours that the pics are being taken. Then you go back to return that device from which they retrieve the images. It really does sound a lot less intrusive than an endoscope, so I'm really hoping it will be sufficient and no further testing with be required!

LDJofDenver, the youtube link that you posted in my previous post was such a help! I actually sent a message to that person and she is so helpful, even sending me contact info for a possible doctor!! And I'm so happy to learn that there are a few things here than I can get locally! I have been monitoring my diet very closely and am convinced gluten is to blame for a lot of my problems, so regardless of what they find, I will be gluten free afterward.

Thanks again for all the help! :)

Beth

Beth, make sure you come back and tell us how it went and if you get a diagnosis. I'm glad you're going gluten-free after...hope it helps you heal.

Best of luck,

~Laura

  • 2 weeks later...
JayinUT Newbie
JayinUT
Posted

Try this again (lost the last post I was writing!). Good luck and I hope everything goes well for you.

I had the full series of tests done over a year ago. We started with a pillcam. My prep was no food (water only) after 6:00p.m. the night before and nothing 2 hours before my appointment. I could not be late for the appointment either or they would have to reschedule. I wore this huge belt like thing and had wires pasted to my skin on my torso like an EKG. Then I went about my day and returned that afternoon when they took everything out. The pill passed out late that evening, very easy procedure.

My pillcam showed extensive celiac sprue damage in the very low areas of my small intestine. I then had to undergo another procedure called the balloon endoscopy and colonscopy. That was not a good day. Five hours of procedures because I have sleep apena, told them about it, and they didn't prepare for it. I fought the endoscopy and when they put me deeper down, I stopped breathing. Then they had to wake me up, take me to the OR to have a anesthesiologist run that aspects and control my apena. Well, I never want to have that done. I felt like I had the World Champion Heavy Weight Boxer had used my torso as a punching bag for about 4 days. The biopsy from the upper small intestine showed nothing but the lower portion of the small intestine came back positive though they had not been able to get to where the pictures where because of how my small intestine turns (couldn't get there either way) as it was too dangerous to try the turn; they feared they would tear the intestinal wall. Thanks heaven for the pillcam!

So my pillcam was correct and how I wished I hadn't had the balloon endoscopy or colonoscopy (I had had an original colonscopy before the pillcam which took out some polyps but that was it). The original colonoscopy wasn't bad but the balloon procedures just aren't fun, at least for me.

Glad I did it? Yes as overall I am SO much better now that I am gluten free. I was diagnosed in 1989 as having irritable bowel syndrome (disease) but my gastro is sure I had Celiac going back to then. That means I went 19 years undiagnosed. Better late then never. I hope everything goes well for you.

newlyfoundglutener Newbie
newlyfoundglutener
Posted
Try this again (lost the last post I was writing!). Good luck and I hope everything goes well for you.

I had the full series of tests done over a year ago. We started with a pillcam. My prep was no food (water only) after 6:00p.m. the night before and nothing 2 hours before my appointment. I could not be late for the appointment either or they would have to reschedule. I wore this huge belt like thing and had wires pasted to my skin on my torso like an EKG. Then I went about my day and returned that afternoon when they took everything out. The pill passed out late that evening, very easy procedure.

My pillcam showed extensive celiac sprue damage in the very low areas of my small intestine. I then had to undergo another procedure called the balloon endoscopy and colonscopy. That was not a good day. Five hours of procedures because I have sleep apena, told them about it, and they didn't prepare for it. I fought the endoscopy and when they put me deeper down, I stopped breathing. Then they had to wake me up, take me to the OR to have a anesthesiologist run that aspects and control my apena. Well, I never want to have that done. I felt like I had the World Champion Heavy Weight Boxer had used my torso as a punching bag for about 4 days. The biopsy from the upper small intestine showed nothing but the lower portion of the small intestine came back positive though they had not been able to get to where the pictures where because of how my small intestine turns (couldn't get there either way) as it was too dangerous to try the turn; they feared they would tear the intestinal wall. Thanks heaven for the pillcam!

So my pillcam was correct and how I wished I hadn't had the balloon endoscopy or colonoscopy (I had had an original colonscopy before the pillcam which took out some polyps but that was it). The original colonoscopy wasn't bad but the balloon procedures just aren't fun, at least for me.

Glad I did it? Yes as overall I am SO much better now that I am gluten free. I was diagnosed in 1989 as having irritable bowel syndrome (disease) but my gastro is sure I had Celiac going back to then. That means I went 19 years undiagnosed. Better late then never. I hope everything goes well for you.

Do you mind if I ask: what was the cost difference? When they do my follow up, I would much rather do a pill than have them go back down my throat. My throat was sore for several days.

Thanks. ;)

Bethinjapan Rookie
Bethinjapan
Posted
  • Author

Yes, my process was just like the previous poster, only here, they asked me to stay in the hospital all day and didn't want me around any electronic devices...needless to say, it was a long eight hours!! :P

I also kind of posted about the results in another post, but, in case you missed it and care to know, I went back yesterday and she said my villi looked okay. The only thing she was a bit concerned with was in my duodenum, she said I had "multiple duodenal erosion". It wasn't like ulcers, it was like it was polka dotted, little red spots throughout. She showed me this as something to look for when diagnosing celiac in a medical book. So they're going to do an endoscopy and the blood tests in a couple weeks, but not the long endoscopy typically used for celiac, I don't think. She also said my digestion was extremely fast, but didn't say whether that was good or not.

It's crazy, I know, but I have to admit I feel kind of down. I feel like I'm about to get the IBS and fibromyalgia run around, and I was SOOO hopeful for some definite answers to the joint pain, neuropathy, diarrhea, infertility, etc, etc. I KNOW I felt better after a couple days off gluten several weeks ago! I'm still going to go gluten free, once the testing is all done, but I can't help but feel a little hopeless today. :( I just want to feel good!

cyberprof Enthusiast
cyberprof
Posted
Yes, my process was just like the previous poster, only here, they asked me to stay in the hospital all day and didn't want me around any electronic devices...needless to say, it was a long eight hours!! :P

I also kind of posted about the results in another post, but, in case you missed it and care to know, I went back yesterday and she said my villi looked okay. The only thing she was a bit concerned with was in my duodenum, she said I had "multiple duodenal erosion". It wasn't like ulcers, it was like it was polka dotted, little red spots throughout. She showed me this as something to look for when diagnosing celiac in a medical book. So they're going to do an endoscopy and the blood tests in a couple weeks, but not the long endoscopy typically used for celiac, I don't think. She also said my digestion was extremely fast, but didn't say whether that was good or not.

It's crazy, I know, but I have to admit I feel kind of down. I feel like I'm about to get the IBS and fibromyalgia run around, and I was SOOO hopeful for some definite answers to the joint pain, neuropathy, diarrhea, infertility, etc, etc. I KNOW I felt better after a couple days off gluten several weeks ago! I'm still going to go gluten free, once the testing is all done, but I can't help but feel a little hopeless today. :( I just want to feel good!

Hang in there Beth. And I know it's hard not to have a diagnosis but I'm glad you're going to give gluten-free a chance.

My best to you.

~Laura

nora-n Rookie
nora-n
Posted

Interesting that the pill cam found celiac where the endoscopy does not reach. I wonder if that is the problem for us with negative biosies.

nora

jerseyangel Proficient
jerseyangel
Posted
Interesting that the pill cam found celiac where the endoscopy does not reach. I wonder if that is the problem for us with negative biosies.

nora

Nora, I was thinking the same thing.

cyberprof Enthusiast
cyberprof
Posted
Nora, I was thinking the same thing.

I think I remember reading that that was one of the reasons that the pill-cam is used -- they suspect that more damage occurs in the unreachable (by endoscopy) part of the small intestine. The downside to the pill-cam is that it can't take samples.

~Laura

nora-n Rookie
nora-n
Posted

About japan and celiac, there is at least one thread here in this forum way down in a folder for foreigh countries. It is interesting because it also describes how to survive eating gluten-free in japan. Soy sauce has a lot of gluten, you know.

I have also read other postings here and many japanese celiacs (there are few in total) are DQ9. Do a search here.

nora

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      how much gluten do I need to eat before blood tests?

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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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