Hi all. Iv come to this forum for some help! 3 years ago I was diagnosed with coeliac dies ease following a gastroscope biobsy. Since then I have remained gluten free and my symptoms after around 3 months improved. However my bowel habits remained abnormal. Constipated then loose ect ect but never any blood or mucous. I went to the dr 6 weeks ago following a 2 week episode of exrutiating pain in abdo after eating, followed by loose stools and brown/orange jelly mucous :/ urgh sorry! Literally doubled over and then left with a raw gnawing feeling in my abdo. 6 weeks down the line I'm still suffering. Iv lost 7 pounds this week. I'm scared to eat because of the pain and nausea. My gp sent two urgent referrals following pr exam, one 6 wks Ago which the hospital say they never received and another 3 weeks ago which isn't received either! I went to er Friday because I wasn't getting anywhere and was told my bloods were normal but to treat it as ibd. I'm am now waiting for a colonoscopy but want to know. If its uc or Crohn's can I have stools that aren't always loose? And normal bloods? PLEASE HELP
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Are my symptoms ibd? Please help
- Thread starter Nursemel
- Start date
- Location
- Vancouver,
I don't have Crohn's. But, I do see mucus frequently along with occasional blood. My bowel movements go up and down too. I don't think that this is celiac disease from what you're describing. But, your best bet is to be checked out by a GI. Sounds like you're not getting what you need from the emergency room. Afraid that I don't have much advice. But, am hoping with you that you'll get some relief soon. Sending you lots of hugs.
Thanks for your reply. I don't think it's coeliac either considering iv been living of cereal for past 5 weeks and haven't eaten in over a week now at all and the pain is still their constantly. Not getting any help that I need from er so back to doctors I go again tomorow 
thanks for your reply
thanks for your reply
DustyKat
Super Moderator
Hi Nursemel and :welcome:
I am sorry to hear of all you are going through.
It is possible to not have diarrhoea and also normal bloods and still have IBD. My daughter was certainly a case in point for that.
I assume they checked for inflammatory CRP and ESR when they did bloods?
When you see the doctor ask that they do faecal calprotectin. It is also possible that this result too can return a normal result but it is less common and if inflammation is present you will know that it is intestinal.
Scoping is still the gold standard in getting a diagnosis for IBD so the sooner you can get one done the better. I hope they don't keep you waiting too long!
Perhaps in the interim the doctor could look into some EEN (Exclusive Enteral Nutrition) for you? It will help rest the bowel and hopefully alleviate pain but at the same provide all your nutritional needs. In one way though I am loathe to suggest it because it can have the potential to heal the bowel quite well which can be counter productive if you are undiagnosed and awaiting a scope.
I hope you can get a scope ASAP followed by solid answers and relief! if you have any other questions please don't hesitate to ask!
Dusty. xxx
I am sorry to hear of all you are going through.
It is possible to not have diarrhoea and also normal bloods and still have IBD. My daughter was certainly a case in point for that.
I assume they checked for inflammatory CRP and ESR when they did bloods?
When you see the doctor ask that they do faecal calprotectin. It is also possible that this result too can return a normal result but it is less common and if inflammation is present you will know that it is intestinal.
Scoping is still the gold standard in getting a diagnosis for IBD so the sooner you can get one done the better. I hope they don't keep you waiting too long!
Perhaps in the interim the doctor could look into some EEN (Exclusive Enteral Nutrition) for you? It will help rest the bowel and hopefully alleviate pain but at the same provide all your nutritional needs. In one way though I am loathe to suggest it because it can have the potential to heal the bowel quite well which can be counter productive if you are undiagnosed and awaiting a scope.
I hope you can get a scope ASAP followed by solid answers and relief! if you have any other questions please don't hesitate to ask!
Dusty. xxx
Dusty
Thankyou so much for your reply. I am really feeling in limbo at the moment and really feel like this keeps getting blamed on my coeliac disease. I have put in a stool sample so will ask my dr tomorow if they are testing it for what you said. I am a nurse myself and the way I was treated in er was unacceptable they didn't even check my vital signs ie: blood pressure temp pulse rate and I had to ask them to take bloods! Iv lost so much weight this week and at the start of this episode I did have dioreah so thought maybe it was Crohn's it's just the not having any now that made me unsure and the normal esr and crp. I ate some grilled chicken last night and was in agony 30 minutes later doubled over with stomach pains and vomited just want to get to the bottom of it (pardon the pun!) I am due for a scope but both my referrals have been lost so awaiting tomorow to see my gp about it and hopefully she can re book it ASAP. I am meant to be going to Rome on the 30 th but feel its doubtful unless I get treated soon because I can't eat. They haven't offered me and diet( we use moulin in uk it's probable the same type of thing you mean it's a milkshake drink with all your nutrition) I guess I am just anxious to know what it is. Does it sound like Crohn's in your experience? I'm so sorry to hear your two children are sufferers that must be awful.
Thanks again dusty
Mel xxxx
Thankyou so much for your reply. I am really feeling in limbo at the moment and really feel like this keeps getting blamed on my coeliac disease. I have put in a stool sample so will ask my dr tomorow if they are testing it for what you said. I am a nurse myself and the way I was treated in er was unacceptable they didn't even check my vital signs ie: blood pressure temp pulse rate and I had to ask them to take bloods! Iv lost so much weight this week and at the start of this episode I did have dioreah so thought maybe it was Crohn's it's just the not having any now that made me unsure and the normal esr and crp. I ate some grilled chicken last night and was in agony 30 minutes later doubled over with stomach pains and vomited just want to get to the bottom of it (pardon the pun
!) I am due for a scope but both my referrals have been lost so awaiting tomorow to see my gp about it and hopefully she can re book it ASAP. I am meant to be going to Rome on the 30 th but feel its doubtful unless I get treated soon because I can't eat. They haven't offered me and diet( we use moulin in uk it's probable the same type of thing you mean it's a milkshake drink with all your nutrition) I guess I am just anxious to know what it is. Does it sound like Crohn's in your experience? I'm so sorry to hear your two children are sufferers that must be awful. Thanks again dusty
Mel xxxx
DustyKat
Super Moderator
Hey Mel,
It can be hard at times but my kids are doing well at present thanks hun, they are both in remission.
It is difficult to say if it is IBD but certainly with the symptoms you have it is definitely something that needs to be ruled in or out. You will also find that while not hugely common it is not an unusual for people with IBD to also have coeliac.
If the scopes return normal results and symptoms persist then push for imaging of the small bowel if it is not offered to you. As a nurse you would know that scopes only reach so far and therefore leave almost all of the small bowel uncharted.
I hope things settle or are at least getting sorted soon and you are able to go to Rome.
Dusty. xxx
It can be hard at times but my kids are doing well at present thanks hun, they are both in remission.
It is difficult to say if it is IBD but certainly with the symptoms you have it is definitely something that needs to be ruled in or out. You will also find that while not hugely common it is not an unusual for people with IBD to also have coeliac.
If the scopes return normal results and symptoms persist then push for imaging of the small bowel if it is not offered to you. As a nurse you would know that scopes only reach so far and therefore leave almost all of the small bowel uncharted.
I hope things settle or are at least getting sorted soon and you are able to go to Rome.
Dusty. xxx
DustyKat
Super Moderator
No worries.
You reply the same way as you do here. Under my message there is a reply text box.
Dusty.
Hi, sorry you're having such a tough time. Unfortunately it does take a long time to diagnose conditions sometimes, and as I'm sure you know, there are many, many conditions which could cause your symptoms besides coeliac and Inflammatory Bowel Disease. I guess you're using the NHS? Just be aware that the waiting lists for tests can be many months long, and it can take just as long to get to see a consultant. It would be quicker if your symptoms were regarded as serious enough to warrant an urgent appointment though, and it does sound like your GP tried to fast track things a bit, if the referrals hadn't got messed up.
Usually you're referred to a consultant (gastroenterologist) before you have tests, at least that's the way it's always been for me - have the consultation and then the consultant orders whichever tests he thinks you need. Have you been referred for a consultation, or just for the colonoscopy?
You said you haven't eaten in over a week - what are you living on? Just liquids? You can ask your GP for meal replacement supplements which provide a lot of calories and all the vitamins and minerals you need, or you can buy brands like Complan from chemists. I'm not sure which brands are gluten free though.
If you do go ahead with going to Rome, you might need to check whether you need travel insurance - I'm not sure which countries it applies to, but if you've got travel insurance which doesn't cover your current illness, you may run into difficulties should you need emergency care while there. Since you are having appointments now they will know you were aware of the condition prior to travelling, so you'll probably need to get cover for an existing condition. Sorry, I don't think I did a very good job of explaining that!
Usually you're referred to a consultant (gastroenterologist) before you have tests, at least that's the way it's always been for me - have the consultation and then the consultant orders whichever tests he thinks you need. Have you been referred for a consultation, or just for the colonoscopy?
You said you haven't eaten in over a week - what are you living on? Just liquids? You can ask your GP for meal replacement supplements which provide a lot of calories and all the vitamins and minerals you need, or you can buy brands like Complan from chemists. I'm not sure which brands are gluten free though.
If you do go ahead with going to Rome, you might need to check whether you need travel insurance - I'm not sure which countries it applies to, but if you've got travel insurance which doesn't cover your current illness, you may run into difficulties should you need emergency care while there. Since you are having appointments now they will know you were aware of the condition prior to travelling, so you'll probably need to get cover for an existing condition. Sorry, I don't think I did a very good job of explaining that!
Thanks for replying unxmas. I am already under a ge consultant for my coeliac but I am now waiting to see him regarding this matter. As 2 urgent referrals have been lost/not sent? I have been waiting over the weekend as my doctor is not back in untill tomorow. I was told at the hospital that I need to then contact her regarding the colonoscopy. As you can imagine this is very frustrating! Yes I know their is so many things it could be I'm only enquiring here as the dr who saw me in er seemed to think it was ibd. I'm not sure what I think really. I have been living this past week on cereal it's the only thing that doesn't Overly upset my stomach. Thanks for all the advice on Rome too I always travel with insurance so that's not an issue but don't think I'll be going to be honest. Thanks for your advice and guidance. Just want to get it sorted. You explained really well thankyou