Capsule Study Of The Small Intestine

[Kathy Mac]

I've been suffering with GI issues for the past 5-6 years (I'm 37). First it started as acid reflux. The reflux was diagnosed by an endoscopy. I controlled it with prilosec and for a few years. Then about a year and a half ago I had a really bad experience - every time I ate I felt like I had a lump in my throat, my reflux got really bad, then I just was uncomfortable all the time. I developed anxiety. I couldn't eat for a week and lost 20 lbs. My Dr. ran the celiac blood panel and it was negative, my GI did an endoscopy and colonoscopy (inflammation biopsied in my esophagus, stomach, and colon including my some in my duodenum and all came back negative). So no celiac, but I tried a wheat free diet and it helped. I noticed after I stopped eating wheat that when I slipped and had some I got gassy, bloated, and had abdominal cramps. My Dr said it was fine to continue the diet maybe it was an IBS trigger so I loosely stuck to it. I also switched to Nexium which has been doing a great job at controlling my acid reflux.

I thought I was doing OK. Well I went to give blood a few weeks ago and was turned away due to low hemoglobin. My Dr. ran some tests and I am anemic (iron deficiency). I am tired a lot and get breathless easily during exercise so I shouldn't be surprised. I went back to the GI Dr. he just did another colonoscopy and endoscopy. He only found some gastritis in my stomach (I always have that - not a surprise). Since he didn't find anything to explain the anemia he is sending me for a small bowel capsule study (you swallow a little camera and it takes pictures of your upper GI and small bowel (where they can't get to with the endoscopy).

So my question is .... has anyone been diagnosed by a small bowel capsule? Since my blood screen was negative and my duodenum biopsy was also negative should I give it up thinking it's celiac or could my damage be lower in my small bowel and the capsule will pick it up? I read online about what the test is supposed to help diagnose and it sounds like they are more looking for more commonly deformed blood vessels that could be bleeding, and less common chron's or tumors.

Thanks for your help,

Kathy

[mef]

This doesn't answer your question per se, but you mentioned you cut out wheat. When you do a celiac diet, it's more than just wheat that you don't eat. Even if you don't receive a celiac dx, and the wheat free diet helped, why not stick with it? You don't need a diagnosis do a gluten-free diet!

As a side note--I was slightly anemic prior to dx with celiac.

Good luck with the capsule study! I hope you find some answers soon.

[Half full]

I had the capsule endoscopy done, because I had a mild anemia as well. I do have some positive celiac antibodies as well (TTGA about

30 and Gliadin Igg about 40-45), but two endoscopies had negative biopsies. The capsule endoscopy was to look for ulcers or Chrohn's, but my GI doctor said sometimes they can see celiac as well.

My capsule endoscopy showed some blunting of villi in the beginning of the small intestine. So for me, I think it was quite valuable. I'm trying the gluten-free diet for 9 months while my blood tests are being monitored.

I would definitely eat wheat for a good while before the test, though, because that way any villi abnormalities may be picked up.

[Kathy Mac]

Just wanted to give you an update. I did have the capsule study and my Dr. saw a very small ulcer in my small bowel. He believes it is IBD and has referred me to another GI Dr. for an enteroscopy to confirm the diagnosis. He thinks my reaction to gluten is IBS related - either way he says if it doesn't feel goood to eat it then don't eat it.

Kathy

[Kathy Mac]

OK so now I feel like a ping pong!

I went to the GI Dr. that my GI Dr. referred me to for an enteroscopy. Aparently it is an endoscopy that goes a lot further into the small bowel (about 1/2 way down - or 1/2 way up if they start in the colon) and can take biopsies (which the pill cam can not). I guess not many Drs have the training to do the enteroscopy.

I had to get my test results/Dr summary etc for my consult with the enteroscopy Dr. It seems the pill cam showed 1 small "aphthous ulcer" in the small bowel which I guess can indicate chron's so that is why I'm going for the test, but the note also says he should repeat the small bowel biopsies to rule out sprue, etc... so he must still think celiac is a possibility.

I met the new Dr. for a consult and he was really nice, young, and very open with information - which I'm not used to and I appriciated. He told me that he was leaning more toward Celiac then Chron's. He told me that my endoscopy results from 07 showed "some mild prominence of intraepithelial lymphocytes with preserved villous architecture" and this is sometimes a leading indicator of celiac. My other Dr never told me about this I guess becasue in itself it's not conclusive. My recent endocopy biopsies in Jan were normal, but I'd been on a gluten-free diets for most of the last year - so no suprise. I've been eating as much gluten as I can since the begining of Jan (when the GI test started up again) and I feel aweful. Hopefully the next test will be conclusive.

I would really just like to know what it wrong ...... wish me luck .... the test is March 4th.

Kathy

[Kathy Mac]

So I went in for the enteroscopy ..... I was all doped up from the sedative, but the Dr. talked to my husband. He was all excited because he was able to see my whole small bowel and usually they can only get about 1/2 thru it in one procedure. So he saw everything there is to see I mentioned my celiac concern before the procedure and he said he was sure to take a bunch of biopsies for it. He also said he saw a couple of spots of something he'd never seen before (what could that be) and biopsied those too. I should know the results next week. Since I can't imagine there is another test they will subject me too, my husband and the rest of my family are putting me back on a gluten free diet. I feel just aweful after 2 months of eating it.

Hope no one minds my updates ... it's kind of cathartic for me.

Kathy

[maile]

Glad to hear the enteroscopy went well....as for updates, please do continue!

[rubyred]

Hi Kathy,

Definitely keep us updated! Your story is actually very similar to mine. I've been to a few different GIs and had numerous tests. At first I was told IBS in addition to stomach ulcers about 6 years ago. Then 2 years ago, I had more testing done because of increased symptoms (gas, bloating, D, etc). My new GI suspected crohn's. She found some ulcers, inflammation, and I'm not sure what else, which led her to believe I had crohn's. She was so sure she started me on pentasa right away before viewing the biopsies. One week later, I was told I don't have crohn's because the biospies were negative. After the negative tests, she just assumed it was stress and IBS without exploring other options. One year later, I saw another GI for more tests because I just wasn't satisfied with the other one and I was having major symptoms. My endoscopy showed "mild blunting of villi." But the biopsies were negative. I had chronic gastritis and esophagitis. But those didn't explain my main symptoms, which were GAS, loose BMs, bloating, etc etc etc. Also just a month ago, I had a blood test which showed borderline anemia.

Anyway sorry to take control of your thread. Just thought that we have a lot of similar problems and have been through a lot of similar tests, etc.

I hope you do find your answer!! I'm still looking, although I've been gluten free for about 7 months. I just saw Dr. Fasano (I'm very lucky I live in Baltimore and can see him). He looked at my lab results and told me he can't diagnose me with anything before seeing the biospy slides but he believes it is celiac because of the blunting of villi and my response on the diet. I'm waiting for him to look at the slides then hopefully he can diagnose me, if Celiac is in fact what I have. Good luck and keep us updated!!

[Kathy Mac]

Thanks for the encouragement.

RubyRed,

Our issues/experiances do sound similar. Sorry to hear that - hang in there and I hope you get a diagnosis soon. I'm cauiously hoping that the recent biopsy results will tell me something, but I've had so many tests come back normal that I'd be shocked if it was anything but that. The really wierd thing is that I was almost relieved when my Dr had a preliminary diagnosis of Chron's because it meant I could identify my enemy and fight it more effectively. How crazy is that to be relieved to think I have a chronic uncurable autoimmune disease where 80% of the patients have to have bowel surgery? Well, I'm glad I don't have Chron's, but I'm really tired of being sick and tired with no hope of feeling better. I like reading the posts on this board and seeing where people found a diagnosis and more comfort (celiac or otherwise) ... it gives me hope.

Who is Dr. Fasano?

Laugh loud, long, and often,

Kathy

[rubyred]

I know exactly how you feel! When my GI told me I don't have Crohn's, I was honestly a little sad because I really thought I had my answer and I was done searching. Obviously I'm happy I don't have a chronic illness either haha but searching for a definitive diagnosis is clearly quite difficult and stressful! So many of my tests have come back negative as well. My bloodwork for Celiac has come back negative twice. I will be shocked if Dr. Fasano actually confirms a Celiac diagnosis from my biopsies, especially since whoever read them before decided they were negative. I've had so many negatives, I've questioned my own body and my symptoms. I've thought in the past, well maybe this is just how people feel, the diarrhea, gas, bloating, etc. Maybe this is normal and I'm just an annoying complainer. But since I've gone gluten-free, almost all of my problems have disappeared. I'm still working on eliminated 100% of the gluten, and not just 95%. I really need to be more careful with cross contamination, but that's another story! It's hard when you don't have a definite diagnosis, to justify the strictness of the diet (at least for me personally). I don't think it's necessarily hard, but it does take time to learn the ins and outs.

I really do want a diagnosis, because once I have one, I can do whatever I need to do to be healthy. I know a lot of people struggling to get a diagnosis feel the same way. Oh and Dr. Fasano is a leading celiac doctor who is from Italy and has done many field changing studies.

[Kathy Mac]

Wow, we have had REALLY similar experiances!

My blood tests have come back negative for celiac twice too. I really haven't eaten much gluten in the past few years so I have a kernal of doubt that they were accurate. I question my own judgement on the severity of my symptoms everyday. But in moments of clarity I know it's not normal. And I swear that eating gluten free does help. After eating it for the past 2 months I feel worse than I have in my life. Even my Husband, Sister, and some good friends have urged me to go back to gluten free. I wanted to wait until this one last test was over because I can't do that again. And I have to say, how barbaric is it that I have to make myself sick enough for the damage to be substantial so it can show up on a test to be diagnosed. That's just cruel! I want heathcare like in star trek where they wave a gadget at you and poof you know all the detail of what's wrong (a girl can dream ).

This time I know the Drs have done their due diligence so if the tests are all normal then it's not anything obvious and horrible so that would be good and I'm really goning to give gluten free a fair shake to see just how good it can make me feel. I hear what your saying on the point that a diagnosis would help you stick closer to such a strict diet. My problem with gluten free has been that I'll stick to it really well then start feeling better and convince myself that since I didn't get a diagnosis that I was had celiac that it must be OK to eat a little gluten sometimes. What tricks the mind can play!

I should know more this week so stay tuned and let me know how it works out for you.

Kathy

[Kathy Mac]

OK, so tomorrow is 2 weeks since my enteroscopy and still no results! Holy cow how many biopsies did he take!?! They said the results are typically avaliable 5-7 business bays after the procedure and we're going on 10. Just venting a bit. I'm anxious to hear the results. I carry my cell phone with me everywhere, just in case they call. I guess they come when they come. I'd rather them be correct then fast (but correct and fast is even better )

Kathy

[Kathy Mac]

So now I'm getting mad. Still no results! I left messages Monday, yesterday, and today and not even a call back. It's been 2 1/2 weeks since the test. Has anyone else had to wait that long for biopsy results? I'm assuming this means they haven't found anything crazy or to bad since I hope they would have call for that. But even if the results are normal or not done yet they could at least call me back

I'm not very paitent so the suspense is killing me.

Kathy

[lizard00]

So now I'm getting mad. Still no results! I left messages Monday, yesterday, and today and not even a call back. It's been 2 1/2 weeks since the test. Has anyone else had to wait that long for biopsy results? I'm assuming this means they haven't found anything crazy or to bad since I hope they would have call for that. But even if the results are normal or not done yet they could at least call me back

I'm not very paitent so the suspense is killing me.

Kathy

My husband found out he had high cholesterol about a year ago. He had the tests run, and had an appointment scheduled about a week later. So, no one called about his results, and he didn't think they would because he was going in. He had to change his appointment because of the doctor, and couldn't get an appointment until about a month later. During this whole time, no one once called him to give him his results. When he went in, the PA seemed to be SOOO concerned this his cholesterol was through the roof. But they let it go about a month and a half before they told him.

Moral of the story: Just because they don't call you doesn't mean your biopsy couldn't have turned out to be positive. It's a shame they haven't returned your calls yet, though. I hope you hear from them soon. The hardest part is always the waiting.

[Kathy Mac]

So the results are in........ the biopsies were negative for celiac. He did see a small ulcer, but thinks it was due to taking over the counter pain relivers (which I don't take very often - 1x a month maybe). However, just in case he wants me to take a blood test for IBD to totally rule out Chron's. Seriously we are back on Chron's!!!!!!! I don't think it's Chron's and I'm not so sure about the test he wants me to have -- Prometheus IBD test - has anyone had this test? Did it tell you anything?

Anyway meanwhile I went back on the gluten free diet. 2 weeks later I feel almost normal again. My fatgue is much better, no more frequent BMs, my gas and bloating are way less. And my husband wouldn't let me go back to eating gluten if I wanted to. He is convinced gluten is my problem. So if it's not celiac it is definatly IBS or gluten intolerance or some other reason not to eat it.

Thanks for listening,

Kathy

[rubyred]

hmm, I'm sorry you've been back and forth to so many tests with no answers! It's sooo frustrating! One thing to be thankful for is your doctor(s)....they seem to be taking you seriously and really trying to find an answer - not just saying, "it's IBS" or "it's stress."

I think so many people don't have a definite diagnosis when they decide to go gluten free. For me, it was harder I think. Not having that medically supported diagnosis makes it difficult to justify the strictness of the diet. But it sounds like you have a supportive husband, so that's half the battle! I'm still waiting for the review of my slides to come back. Either way, I'll stay gluten free. We all know our bodies so much better than any doctor. One GI doc I saw said there could be varying degrees of celiac. I don't really know how much I believe her; that's like saying, you are only a little pregnant. But maybe she meant that in the beginning of the disease, there's not enough damage to get a positive biopsy? Maybe the "minor" abnormalities we've both had on our endoscopies indicate "early" celiac (or whatever you want to call it). Who knows. This disease is still in its infancy regarding medical research. I wish you the best of luck though! Still keep us posted, if you find you have IBD or whatever. I'll keep you posted when I find out about my biopsy and what the expert in the field says! Maybe it could help you too....