Conflicting Test Results?

[LauraJade]

Hi so just after some advice really. Been having stomach complaints for about 6-7 years now. Very rare that I'll have normal BMs, nearly always diarrhoea. When I'm feeling really bad, up to 5 times a day, when I'm good, just once a day. Sometimes I'll just get really soft stools. Most of the time I have problems after I eat - like literally 15 minutes and I'm on the toilet crapping my guts out :ylol: The pain at that time is really bad but it eases a lot after a bm and is just an ache for the rest of the day.

First idea was Coeliac, but that came back clear (yes!! I love bread :lol2

Second idea was IBS, so my Dr put me on Peppermint Oil caps and Mebeverine to try and reduce the cramping etc, but they didn't work. I had blood tests done and they came back with a B12 deficiency. He put it down to diet (?) and gave me a shot. He asked me to do a stool sample (this was age 16) and I refused, being a teenager and all.. and didn't go back for a few years, just lived with the problems.

It got worse and more frequent episodes of feeling crappy a year or so ago, so I went back to me Dr and he referred me for a Colonscopy. I had that last November and it came back clear. I also had some bloods done again and was still B12 deficient, (since I'd only had the one shot at 16 and never went back for any more..didn't realise I had to!). Now I'm getting B12 every 3 months. I know when it's time to get one 'cause I start falling asleep at midday :ylol:

After the Colonoscopy came back clear (worse experience of my life ha) I was referred to a GI doc..he told me he wanted a stool sample and more blood..this time it said my B12 was up to normal (since I'm getting the supps) but my Globulin was raised at 6 (meaing inflammation in the body). He said he was testing my stool for Calprotectin, and if it was raised it would mean there was inflammation in the bowel, i.e. IBD.

I got a letter a couple of months back saying my stool results were back and my calprotectin level WAS raised, and I needed an MRI scan. So 4 weeks ago I had an MRI scan and just got a letter the other day saying that is clear also. I'm not back to see my GI until October..at which time I'm pretty sure he's gonna request a Pill Cam, since he's mentioned it before.

Since the last appointment with him, I've been getting recurring pains in my right side. It's not like a dying pain, more of a pulling, annoying pain that lasts up to a few days, it's really starting to bug me, cause it's hard to concetrate at work and stuff with this niggling pain.

So basically, to cut a REALLY LONG story short, with a clear Colonoscopy and MRI could I still have IBD? My blood and stools show inflammation, and I'm clearly having problems getting B12, yet both the other tests have been clear..?

I just want to know what it is so I can get sorted. I'm 22 and shouldn't have to be dealing with this crap :/ I feel like I live on Loperamide, and I'm constantly worrying about whether there is gonna be a toilet and how embarrassed I'm gonna be if I have to go somewhere public. It's gotten to the point where I'm reluctant to eat out, and I definitely wouldn't eat out very far from home, which sucks when it's friends birthdays and stuff

 

[StarGirrrrl]

So basically, to cut a REALLY LONG story short, with a clear Colonoscopy and MRI could I still have IBD? My blood and stools show inflammation, and I'm clearly having problems getting B12, yet both the other tests have been clear..?

Short answer- YES! There are several members here who had every single test come back normal, and it took a Pill Cam to find CD. It's a great test to have and it can be hard to get (especially in England) so glad you should be getting one. There are also other tests to visualise the small bowel, although the Pill Cam is the most detailed for sure.

B12 deficiency is a warning sign for Crohn's.

One more thing, when you say coeliac was ruled out, was this by blood alone? As the only way to be 100% sure is to take biopsies during an upper endoscopy. The blood tests are useful but alone they aren't enough.

Also did you have biopsies during your c-scope and they came back clear?

Is there any way you can get your appointment bumped up? Make it clear things have gotten worse, maybe go through your GP, or ask GI secretary to put you on cancellation list.

 

[LauraJade]

Short answer- YES! There are several members here who had every single test come back normal, and it took a Pill Cam to find CD. It's a great test to have and it can be hard to get so glad you should be getting one.

B12 deficiency is a warning sign for Crohn's.

One more thing, when you say coeliac was ruled out, was this by blood alone? As the only way to be 100% sure is to take biopsies during and upper endoscopy.

Is there any way you can get your appointment bumped up? Make it clear things have gotten worse, maybe go through your GP, or ask GI sebretary to put you on cancellation list.

Thanks for your reply!

Yeah it was blood tests for Coeliac. Is an upper endoscopy a camera down your throat cause I really don't think I could deal with that, I have such a sensitive gag reflex :| Can Coeliac cause bowel inflammation?

I could probably give the hospital a call and see what they say but I'm crappy with things like that! I'm on holiday next week, so maybe I could pluck up the courage to call them when I get back. I wish we could email GIs in the UK like they do in the US, much easier than phone!! :yrolleyes:

Also, another question, if it turns out I do have IBD, will I ever get rid of the diarrhoea or is that just something you learn to live with?

 

[StarGirrrrl]

Thanks for your reply!

Yeah it was blood tests for Coeliac. Is an upper endoscopy a camera down your throat cause I really don't think I could deal with that, I have such a sensitive gag reflex :| Can Coeliac cause bowel inflammation?

I could probably give the hospital a call and see what they say but I'm crappy with things like that! I'm on holiday next week, so maybe I could pluck up the courage to call them when I get back. I wish we could email GIs in the UK like they do in the US, much easier than phone!! :yrolleyes:

Also, another question, if it turns out I do have IBD, will I ever get rid of the diarrhoea or is that just something you learn to live with?

You are more than welcome

Yes that is what is an upper endoscopy, they can give you a numbing throat spray (mine was well weird, I knew I was swallowing when they asked me to but couldn't feel it at all) and make you sleepy, maybe if you don't get anywhere you could think about that. I was horrified at the thought of mine, and it wasn't nice, but I managed it! And no prep required apart from no food/drink for so many hours.

Ceoliac can certainly cause bowel inflammation. Because you become allergic to the gluten, it irritates and inflames the lining of your small intestine and destroys it (which is why only a biopsy can rule it out/in 100%, as they look at the bits under a microscope).

The last question is difficult to answer, as IBD effects everyone differently and so do the treatments. Some can go into a complete remission, for others symptoms persist. But I am fairly confident to say being treated has got to be better than going untreated.

 

[Carrie630]

LauraJade, My gag reflex is ridiculous but as far as I know it wasn't an issue when I got my upper endoscopy. They spray your throat to numb it, and one of the sedatives should help relax the gag reflex. I don't remember anything.

 

[Cat-a-Tonic]

Hi Laura Jade and welcome to the club. With regards to whether the diarrhea will ever actually go away - as Star said, it's possible but everyone is different. I'm currently in or near remission. I have diarrhea a few times a week, and it's usually associated with eating something I shouldn't (stuff like dairy, fried foods, etc can still have a bad effect on me even though my illness is pretty well controlled these days). At most I'll have diarrhea a couple times per day nowadays - but, my other symptoms, such as pain, fatigue, nausea, etc are pretty much gone. So it can definitely get better!

And I definitely agree with Star, if celiac is a possibility, don't rely on the blood test results, please do look into getting an upper endoscopy as that is considered the gold standard for diagnosing or ruling out celiac. That particular blood test is known as being very unreliable. My experience with the upper endoscopy was that it was very easy, the sedation pretty much put me to sleep and I awoke after the procedure feeling like I'd just had a lovely nap. No pain and I don't remember a thing.

Having said that, if you are dead set against having an upper endoscopy, you may just want to try giving up gluten for a few weeks and see if it makes a difference. Replace wheat with things like rice (you can get rice flour, gluten-free breads, etc at many stores nowadays). Keep in mind that it is possible to have both celiac and Crohn's, so if you do have both then going GF may not get rid of all your symptoms, but it should help somewhat. Also, if you do go GF, try to avoid corn. Many wheat-replacements use corn, which is very hard for people with Crohn's to digest. So if you do a lot of corn instead of wheat, you may just end up making yourself feel worse!

Sorry if that was a lot of info, I hope I didn't overwhelm you there. Anyway, I hope you get some answers and relief soon!

 

[allieinwonder]

You know, you and I are very alike Laura Jade! I too got sick around that age, and I am currently 22 with no diagnosis. I understand what you mean by trying to deal with this...I too got scared by doctors at the start, and stopped pursuing this.

As for the B12 defiecincy, inflammation, and a normal colonoscopy...it truly sounds like the issue is in the small bowel. Like others have said, a pill cam is the only test that sees the entire small bowel, and it has been a test that gets people a diagnosis when other tests were not able to. I personally have been told I might have small bowel crohns, and I just had a pill cam a few days ago. Its not hard, but it is time consuming (you have to wear a belt and let the pill travel through you for about 8 hours).

I hope you are able to get answers soon!

 

[LauraJade]

Thanks, I really hope I get the pill cam at my next appt then, I don't mind the waiting around, it's more the starving myself and moviprep I hate haha

If it was in my small bowel would that not have shown up on the MRI..? From what I've read so far, I get the idea the MRI isn't all that helpful in a diagnosis? What's the point in putting me through another litre of moviprep and hours of peeing out my bum for a crap test that wont help..they should just give the pill cam first..I guess it comes down to money..!

Good luck with your results!

 

[allieinwonder]

I personally haven't had an MRI, so I don't know..I'm sorry. I did have a small bowel follow through, and they did that to ensure the pill would get through my small bowel without getting stuck. They used to use SBFT to diagnose small bowel Crohns, but it can only see think inflammation and large ulcers, while the pill cam can see everything. I bet the MRI can't see everything as well.

As for the prep..yeah, it sucks, but I always remember that hopefully the tests I do will be worth it in the end. I had to do a full prep for my pill cam, and then you can't eat anything until the 8 hours of picture taking is up (I was allowed water and sprite, but even that was running right through me due to me being so clean lol). I ended up going 48 hours without eating, and when I finally could eat my stomach didn't want to handle food since it wasn't used to it at that point. It took a few days to be able to eat a full meal again. But in the end, if it gives you a diagnosis, it will all be worth it! The prep days are just a nasty memory in the end.

 

[StarGirrrrl]

Pill Cam prep's vary so it may be a case of fasting and no prep. They are also mega expensive so it's natural they would try everything else first. Although I was turned down on cost grounds (didn't fit either of the 2 criteria to get funding); I think since then (March) the spend on me has gone past a Pill Cam lol, had more tests, clinic appointments and A&E treatment.

CD can be a tricky disease to find, as I mentioned some on here had all the scopes & scans, normal. Then the Pill Cam found it.

Will keep my fingers crossed for you

 

[Omaklackey]

Upper endoscopies are done under sedation, SO gag reflex NOT a problem... Just thought you should know!

 

[LauraJade]

Thanks all!

I get that uppers are done under sedation but they said that with the colonoscopy..they gave me 3mg Midazolam and 100mcg Fentanyl and it had no effect, I remember every last second..they even had me pinned down..I don't trust the word "sedation" anymore!

Fingers crossed I get the pill cam

 

[StarGirrrrl]

Thanks all!

I get that uppers are done under sedation but they said that with the colonoscopy..they gave me 3mg Midazolam and 100mcg Fentanyl and it had no effect, I remember every last second..they even had me pinned down..I don't trust the word "sedation" anymore!

Fingers crossed I get the pill cam

Sorry to hear your c-scope wasn't great. The UK is one of the few places that only gives "twilight" sedation, not the proper knock-you-out stuff you get in the US.

Keep us posted!

 

[StarGirrrrl]

I could probably give the hospital a call and see what they say but I'm crappy with things like that! I'm on holiday next week, so maybe I could pluck up the courage to call them when I get back. I wish we could email GIs in the UK like they do in the US, much easier than phone!! :yrolleyes:

Hi LauraJade, sorry I didn't write this sooner but you should be able to email GI, even in the UK! I email Rheumy and GI's secretary all the time.

If you go to your Hospitals website and have a nosy, you may be able to find a list of Consultants email adresses.

Or you could try some google searches, like GI's name and area etc.