Undiagnosed - does this sound like Crohns? Terrified :(

[Anonyworry]

I want to apologise first for making this kind of topic here, I know many people live life fine with Crohns but I am suffering very badly from health anxiety.


3 weeks ago I awoke with painful trapped gas that lasted all day, it resolved in the evening with some watery diarrhoea.

Since then, every morning I have a lot of gas and gurgling and flatulence, and sometimes again later in the day.

My stools are sometimes soft sometimes normal and once every now and then quite loose.

I haven't noticed any blood or mucous and I don't have a tender abdomen. I do sometimes get niggly cramps that last a few seconds and pass. My stool test was normal but I'm waiting on bloods.

I'm 26 and I know this is a prime time to get Crohns. I know it could be IBS but I haven't had a day without this gas and flatulence since it started and when it did start I did also have a mouth ulcer.

My health anxiety is killing me now and I am basically convinced this must be Crohns.

 

[24601]

You don't have anything to apologize for. We all have questions like these and yes, while some people do get by okay with Crohn's, too many of us have a hard time with it and regardless of which camp you fall into (or in fact wherever you are along that spectrum) I think I can speak for pretty much everyone in saying that we understand that fear about what it will mean to live with this disease.

While your symptoms may not be the typical presentation of Crohn's, there are a lot of us who are atypical. So it is possible that you have Crohn's but it is by no means certain and I would try to wait until you have all the test results back before you get into worrying about that possibility too much. Crohn's is normally confirmed with a colonoscopy but there are other tests that would strongly suggest Crohn's.

Do you know what the stool test you had done was for? A faecal calprotectin test would be useful in looking for inflammation in the bowel but it may be that your doctor was concerned about you having picked up a particular bug since that could cause the increased gas production in your bowel. It is possible that even if the test came back negative that you could have an infection or an imbalance of bacteria.

You're also right that your symptoms are consistent with IBS. I would wait until you get the blood tests back and see if they suggest inflammation and try not to worry until then. I think that's the most important thing right now because the stress isn't good for you. I know it's easier said than done but for now, if you can, try not too worry too far ahead.

Have you tried anything to help relieve the painful gas? Some people find some success with drinking peppermint tea. For me I've found the most relief by adjusting my diet - less carbohydrates and higher protein, and adding in a probiotic. Perhaps a useful thing right now would be to keep a food diary and see if your symptoms are affected by any particular foods.

 

[Anonyworry]

Thank you so much for your reply. I have had a very difficult 12 months with stress and particularly health anxiety and this issue has actually been the worst I've had yet despite my efforts to make a fresh start for 2015

In what way does this presentation not seem classic for Crohns? I have a hard time telling exactly how that is but little things like the fact I get a niggly pain bear my belly button sometimes, the fact I had a mouth ulcer when this started and the fact that I've not had a day without bloating/gas at all since it started made me worry it wasn't IBS and was Crohns. Oh and th fact that this seemed to start suddenly one day made me think perhaps it was inflammation preventing gas from escaping.

I don't know if that was tested for in my stool but I may ask them to do so. I suppose I will end up having a colonoscopy anyway as bloods are sometimes normal in Crohns, I just hope I can control my anxiety until then currently it is ruining my life.

 

[Clash]

I'm so sorry to hear of your struggles.

Although, some CD members have gas, trapped gas and niggly cramps there are many other things those symptoms could be put down to. Off the top of my head, IBS, h. Pylori, parasite infections etc could produce those symptoms.

Although, your symptoms don't scream Crohn's disease I think you are right in moving forward with further testing for answers.

Hope you find relief soon.

 

[24601]

Well, my doctors always tell me that gas isn't a symptom of Crohn's Disease itself, though it can be a symptom of some of the complications of Crohn's, if that makes sense. So if that's your most significant symptom then it is an atypical presentation.

The symptom that people, including doctors, most commonly associate with Crohn's is diarrhoea. And that can be frustrating for many patients like me who present with constipation because the possibility of Crohn's can often be overlooked for a long time.

We do all present differently though - sometimes the only symptom is fatigue, other times a patient might only have mouth ulcers and there are those who have nothing but elevated inflammatory markers in the blood. I'd say most people do have some combination of pain plus bowel disfunction be it diarrhoea or constipation. The important point is that there really is a wide variety of presentations for Crohn's and you don't need to be typical - but it will probably make your doctor look for Crohn's sooner.

I completely understand that you are anxious, especially with this coming on top of a stressful time but my advice would be to try to take things one step at a time and to try not to worry about this possible diagnosis quite yet as you aren't quite there. I'm not saying don't pursue the testing but as much as possible try not to worry - it just doesn't help. While Crohn's is a possible explanation for your symptoms, it seems IBS would fit them quite well too, amongst other things. And whether it is Crohn's or IBS the stress can exacerbate your symptoms so I think that finding a way to lessen your anxieties will be really beneficial - I mean we can all benefit from that Also btw I'm quite an anxious person at times so I understand that that can be very difficult but it's so worth doing. So whatever activities you find relaxing or, if you're into it, practising meditation or anything that makes you feel calm, try to do that a little every day. It's a skill that will help you cope in the event of any diagnosis.

When you get the blood test results back you may well have a better idea of what's causing your symptoms, but hopefully you are able to talk openly with your doctor and can say that you are concerned that it is Crohn's (if you haven't spoken about it already). Ask them if they've ruled it out for you and if so why.

And do update us all on your test results and your path to diagnosis - whatever it may be. There are so many people here who have so much experience and a wide knowledge and also who understand what it feels like to go through that process. I hope you get some relief from your symptoms soon but know that there is support here whatever happens.

 

[Anonyworry]

Thank you guys so much for your time and patience.

Can you tell me what it is about what I'm experiencing that isn't like Crohns?

It is very confusing to read Google which suggest things like, pain around the belly button is classic, and then at the same time classic in IBS.

It is true that my main symptom is this gas an flatulence but I do have soft stool too. It seems to change from day to day, one day absolutely normal, the next day quite loose, but usually it is just a bit softer than normal. I'm going once a day usually, sometimes 2 or 3 at most, I suppose that's not very classic.

 

[The Real MC]

If it is any comfort, a Crohns attack has one primary symptom that you are not reporting.

The only conclusive test is a colonoscopy. More likely you have an IBS than an IBD.

 

[Anonyworry]

Regardless of my diagnosis this experience has proven again to me how much I need to work on my anxiety, for the last 48 hours I have thought of nothing but my bowels and Crohns disease. I am in a kind of petrified trance

It just feels all a bit too coincidental. The fact that this all started so suddenly, the fact that it hasn't really let up in the 3 weeks I've had it. I even had a tender right lower quadrant on the day that it started. The mouth ulcer.

I guess it's true I don't really have any pain or tenderness since that day and I have been going to the gym as normal etc and have normal bowel motions every few days but I understand this is pretty normal even in Crohns presentations?

I guess I'm now looking at a long drawn out serious of investigations eithr way..

 

[Clash]

I'm sorry for your health anxiety. I would request a fecal calprotectin stool test since it tests for inflammation in the GI tract. It can't definitively dx CD but can help determine which way to go with further testing.

I'm not the one with CD, my son has it, but I had the symptoms you described along with intermittent pain. I had the colonoscopy and endoscopy and SBFT since my son has CD, just to be sure. I was positive for h. Pylori but no CD. The meds for h. Pylori resolved all my symptoms after about a week or so.

I hope you find relief and answers soon!

 

[Anonyworry]

I'm sorry for your health anxiety. I would request a fecal calprotectin stool test since it tests for inflammation in the GI tract. It can't definitively dx CD but can help determine which way to go with further testing.

I'm not the one with CD, my son has it, but I had the symptoms you described along with intermittent pain. I had the colonoscopy and endoscopy and SBFT since my son has CD, just to be sure. I was positive for h. Pylori but no CD. The meds for h. Pylori resolved all my symptoms after about a week or so.

I hope you find relief and answers soon!

Thanks for your reply!

I can let myself admit that there are potentially other causes but something about this just seems too suspicious. The pain more on the right than left, the sudden onset etc.

I am calling my GP twice a day to see if my results are back, when they are I'll ask my doctor to book a colonoscopy regardless.

Honestly I feel like it's just a matter of time before I make a more permanent account here.

 

[ryanroks1]

Hello!

I know we briefly chatted on PM, but reading this thread makes me feel a great deal of empathy. Health anxiety is extremely tough to deal with since it can actually worsen the symptoms as well as causing unnecessary worry. I've always feared the worst, so since experiencing my IBD symptoms, I've been very, very scared.

Please believe me when I say it gets better. I still haven't had my colonoscopy, but the treatment I was given has really put my mind at rest and relieved my symptoms. I agree with others that your symptoms are more typical of IBS, but it's best to have an open mind until you hear further from your doctor. I found that looking at all the symptoms actually made my symptoms worse because I was looking out for them - sort of a negative placebo.

I started with blood/stool sample tests and they showed inflammation. I was told that the main difference between IBD/IBS is blood in stools, and the stool sample is good at determining the difference. Within three weeks, I was going to the toilet once a day with Pentasa and I'm beginning to go out and carry on with normal, daily activities. While things are still not perfect, the fact IBD treatment IS helping has stopped be thinking of the other possibilities and decreased my stress, also helping with the symptoms.

You'll get through this, and you have a whole forum full of people who are willing to support you. Try to relax, and I wish you all the best with your results.

 

[Anonyworry]

Thanks for your kind words and time! I'm really struggling immensely with anxiety but you guys are so supportive, it's amazing.

I honestly feel like Ryan your story and mine are too similar to ignore though, and I an bracing myself.

 

[crohnsinct]

I am also so sorry for your anxiety and also want to echo that the gastro tract is a complicated thing and there are many sources for the issues you are experiencing. It could be a long road to diagnosis so anything you could do to help you relax about things will be of great help. I also want to echo the use of the fecal calprotectin test. Results of that test usually will point you in a more clear direction.

Is your anxiety because you are afraid of Crohn's? Please try not to be. There are many, many people with IBD who are living very full and happy lives. I have two daughters with the disease. Neither one has missed a day of school in the past three years due to Crohn's complications. My oldest daughter with severe disease at dx three years ago, returned to running on her high school track team two hours a day and then jumping in the car to go to club swim practice for another two hours just three weeks after her release from the hospital. She is on the headmaster's list at school. My younger daughter while just dx'd has been having symptoms for years prior but never missed a day of school. She plays softball, is on the honor roll and plays in the honors band.

I don't know if the adult forum has success stories but maybe pop over to the Parents forum and read the success stories. Maybe that will help with your anxiety?

Please also try to remember that many people come to forums while they are experiencing difficulty and when they are well are off enjoying their lives...as they should be. So a lot of what you see in a forum can give you a distorted view of what life with any disease might be like.

I might also venture a guess that because you are not experiencing the "typical" symptoms of Crohn's maybe...just maybe...if you do have it, you are catching it very early and it is mild. This is what happened for my younger daughter. Because of her sister's history, we were able to move testing along and she has only mild disease and we hopefully have been able to stop it in it's tracks.

Sending fast result vibes your way...waiting is just the pits and something I don't do well at all.

Keep us posted!

 

[Anonyworry]

Thank you Chrinsinct, that was very good advice and I will take it.

I can't really express how impressed and moved I am by how supportive this community is, even to someone like me who may not even have it. In fact, I am a doctor, albeit only of 2 years and my medical knowledge has done nothing to make me think logically during health anxiety, but I feel like this experience and seeing this community will change the way I practice and has taught me a lot.

 

[crohnsinct]

They are a great group here. I would be lost without them.

Sometimes you know too much if you know what I mean...with my first daughter I was a lot calmer even though she was very ill. With my second daughter I was climbing the walls...all because I knew a little too much.

Well if there is one positive to come from all of this it is that you are smart enough to use this experience in how you will practice in the future. Great perspective!

Here is a link to the success stories I was referring to...it could be hard to find otherwise.

http://www.crohnsforum.com/showthread.php?t=27079

 

[Anonyworry]

They are a great group here. I would be lost without them.

Sometimes you know too much if you know what I mean...with my first daughter I was a lot calmer even though she was very ill. With my second daughter I was climbing the walls...all because I knew a little too much.

Well if there is one positive to come from all of this it is that you are smart enough to use this experience in how you will practice in the future. Great perspective!

Here is a link to the success stories I was referring to...it could be hard to find otherwise.

http://www.crohnsforum.com/showthread.php?t=27079

Thanks I will take a look.

I don't know what to do with myself now really. I keep trying to analyse my symptoms over and over to see if they re Crohns lik.e

 

[Anonyworry]

Can I ask if it is particularly indicative of Crohns to have brief niggly/pinchy pains in the lower left abdomen or if that is still possible in IBS?

 

[crohnsinct]

I don't know what to do with myself now really. I keep trying to analyse my symptoms over and over to see if they re Crohns lik.e

Been there done that.! While my younger daughter was in undiagnosed land and we were waiting for testing. It is a waste of your time really. What will be, will be whether you research it or not. Crohn's is such an od disease. A person can have the tell tale symptoms but then there are so many atypical presentations. Then even the "tell tale" symptoms can also be attributed to a host of other things.

I found if I HAD to research my time was better spent on the "if it is Crohn's then what" aspect. So I was ready for what further tests had to be done, how they were done, prep etc. Also readied myself for treatment decisions and knew what to expect sort of thing. That also did a lot to calm any fears because I saw that it really didn't have to be so bad.

 

[crohnsinct]

Can I ask if it is particularly indicative of Crohns to have brief niggly/pinchy pains in the lower left abdomen or if that is still possible in IBS?

Hmm. I can't say. One of my daughters had no pain the other had pain right under her belly button and it was pretty much constant. You can bang your head against a wall trying to make sense of this disease. It defies all logic.

I think your best bet at this point is to try to get that Fecal Calprotectin test done as that is a very good indicator of inflammation in the intestines. If the number is high then docs usually will move to scopes. If it isn't, majority of the times it is something else. Even if it is high it could still be something else but more likely IBD and scopes will tell that story.

Have you been screened for Celiac?

 

[Anonyworry]

I'm waiting for the coeliac screen too but I don't seem to have any problem eating bread etc

I didn't realise I had the telltale symptoms I guess I'll just have to wait now

 

[Cat-a-Tonic]

Hi Anony, welcome to the forum. First of all, I'd like to say (and I realize this is easier said than done) - try not to worry so much. Regardless of whether you have IBS or IBD or something else, worry and stress will make you feel worse. Do some deep breathing, take a walk, do some yoga, listen to some music - whatever it takes to get your mind off of this and de-stress at least a little bit. I'm a natural worrier as well and trust me, when I'm stressed or worried, my symptoms are much worse.

Other people have touched on this topic but I also wanted to say - the main "red flag" symptoms that would indicate that you have something more than IBS are: unintentional weight loss, blood in your stool, pain that wakes you in the night or waking in the night with an urge to defecate, fevers and night sweats. Have you had any symptoms like those?

Regardless of what you may have or the status of your diagnosis, we welcome everyone here. We even have an Undiagnosed Club for those of us (myself included) who haven't yet been able to pinpoint our illnesses just yet. The Undiagnosed Club can be found here:
http://www.crohnsforum.com/forumdisplay.php?f=75

I hope you get some answers from your upcoming tests. Good luck and welcome!

 

[Anonyworry]

I have lost some weight over the last month or so and more so in the last 3 weeks but I have also been eating very little due to intense anxiety. But yes that's a possible

Night sweats, I have terrible nightmares and wake up feeling or but I don't have the proper bed drenching night sweats.

No blood or mucous, I do wake in the night but not from pain, more from nightmares. No nocturnal diarrhoea etc. I just have one stool a day and it's usually soft, sometimes ok, once a week or so it's watery.

No fever that I have noticed subjectively and didn't have one when I first presented to the dr.

Really my main symptoms are morning Gas burping and flatulence, noisy bowels at times throughout the day, intermittently loose stools and occasional niggly pinching pains in the abdomen (lasting a second or so and changing in location all the time).

I have no tenderness to palpating currently.

I'm starting to feel nauseous too but only since this week after my anxiety levels have reached the most they have ever been in my life. I literally spent 3-4 hours just lying on the bed in intense thought about all of this, missing breakfast etc I know that's really not healthy I should probably just accept that I have a pretty serious issue with anxiety at times, I mean I have given myself benign fasciculation syndrome already and had an episode of psychiatric dissociation lasting about a week before. That's not just every day anxiety I guess..

 

[crohnsinct]

I'm waiting for the coeliac screen too but I don't seem to have any problem eating bread etc

I didn't realise I had the telltale symptoms I guess I'll just have to wait now

Oh no! I didn't mean to worry you. I was speaking in generalizations...you meaning "a person" in general not you specifically. I will edit that now

 

[Kiannacampbell]

Hey, I think you should get a scope done. If there is no inflamed parts then the doctors can say you have IBS. Or maybe it's your anxiety?

 

[24601]

It sounds like you should definitely pursue treatment for your anxiety in parallel to any investigations of your physical health. I'd hate to think that you'd 'just accept' it when anxiety, too, is something that can be treated.

It seems like right now that your anxiety is the most debilitating thing you are dealing with and it has got to the level where you would really benefit from counselling and/or medication.

To be clear I do think you should continue with your GI appointments and any tests your doctor thinks should be done but I really think treating your anxiety is very important too.

 

[Anonyworry]

Can anyone tell me what mucous in stool looks like?

I checked my stool carefully this morning, it wasn't watery just mushy, and it hard a few little nuggets of a kind of a paler, harder substance mixed in with it, it had the consistency of soap.

 

[Anonyworry]

I have just passed another soft mushy stool and looking closely I could find pale rubbery chunks throughout. I can't think of anything else this would be other than mucous.

I am pretty certain I have Crohns.

 

[Anonyworry]

I've just had my results back, with the exception of celiac:

FBC (CBC), CRP, ESR etc. all normal

I don't know if my doctor requested a calprotectin on the stool, I'm going to ask them when they call me

I don't know whether this is any reassurance or whether I basically have to push for further tests and wait

 

[Clash]

Mucus is gelatinous consistency. It is shed from the mucosal lining and occurs from time to time in most everybody. I don't have crohns but have had mucousy stools at times.

Generally with the fecal calprotectin stool test the stool has to be sent off and can take about a week to 2 weeks for results. There are a lot of ins. companies that don't yet cover it since it isn't considered a standard in testing. Most GIs will mention the coverage issue when offering it.

I hope you find some answers soon.

 

[Anonyworry]

Mucus is gelatinous consistency. It is shed from the mucosal lining and occurs from time to time in most everybody. I don't have crohns but have had mucousy stools at times.

Generally with the fecal calprotectin stool test the stool has to be sent off and can take about a week to 2 weeks for results. There are a lot of ins. companies that don't yet cover it since it isn't considered a standard in testing. Most GIs will mention the coverage issue when offering it.

I hope you find some answers soon.

This substance was quite firm, basically like rubber. I could break it apart but only with force. I can't think what else it would be

In the UK it seems they do calprotectin on the national health service but if it requires being sent off in a separate preparation then I assume it wasn't done on mine.

 

[crohnsinct]

Blood results are encouraging! While it certainly does happen in some IBD patients that their inflammation doesn't show in blood labs it is the exception rather than the rule. So I would be encouraged by those results.

What you are seeing doesn't sound like mucus to me. Maybe bits of undigested food?

I would definitely try to get that fecal calprotectin test. It is a very good indicator of intestinal inflammation. Warning though I have heard of some pretty long waits in the UK for results so just be prepared.

Will your GP give you a referral to a GI?

 

[Clash]

Ahh.. I didn't notice you were from the UK, stool collection might vary as well. Hopefully, your doc can give you that info.

 

[Anonyworry]

Blood results are encouraging! While it certainly does happen in some IBD patients that their inflammation doesn't show in blood labs it is the exception rather than the rule. So I would be encouraged by those results.

What you are seeing doesn't sound like mucus to me. Maybe bits of undigested food?

I would definitely try to get that fecal calprotectin test. It is a very good indicator of intestinal inflammation. Warning though I have heard of some pretty long waits in the UK for results so just be prepared.

Will your GP give you a referral to a GI?

I suppose I shouldn't have googled "ibd with normal bloods", pretty much eradicated my feeling of encouragement, but I will try and take what you say on board.

My GP will probably give me a referral if I ask for one, which I probably will.

M final lingering anxiety is that, last year during a very stressful period I develop a rash on my arms near the elbows. It's slightly itchy, slightly dry and red, like little raised mosquito bites. The doctor couldn't make anything of it at the time and it seemed to come and go based on my stress levels.

Now it is has flared up and is across my hips.

I imagine there is a pretty close relationship between IBD and skin rashes, but I am trying to tell myself it is stress related.

 

[Cat-a-Tonic]

Anony - mucus in the stool, for me, literally looks like somebody blew their nose into the toilet. It's the same type of mucus as if you blew your nose - it can be clear, yellow, green, tinged with blood, etc. What you describe doesn't sound like mucus to me. What have you eaten recently? If I see something unidentifiable in my stool, it usually ends up being something I had eaten that didn't digest fully. Mushrooms turn into little black lumps in my stool. Grapes break down but the grape skins don't, so when I pass the skins it looks like little contact lenses. Etc. Look back over your diet the past few days and see if you can figure it out. Keeping a food journal can also help you track things like this and correlate symptoms with what you've been eating. And please note, if it does turn out to be something you ate, that still doesn't necessarily indicate Crohn's. People with healthy digestive tracts sometimes pass partially digested/undigested food (corn being the one that jumps to mind).

 

[Anonyworry]

Anony - mucus in the stool, for me, literally looks like somebody blew their nose into the toilet. It's the same type of mucus as if you blew your nose - it can be clear, yellow, green, tinged with blood, etc. What you describe doesn't sound like mucus to me. What have you eaten recently? If I see something unidentifiable in my stool, it usually ends up being something I had eaten that didn't digest fully. Mushrooms turn into little black lumps in my stool. Grapes break down but the grape skins don't, so when I pass the skins it looks like little contact lenses. Etc. Look back over your diet the past few days and see if you can figure it out. Keeping a food journal can also help you track things like this and correlate symptoms with what you've been eating. And please note, if it does turn out to be something you ate, that still doesn't necessarily indicate Crohn's. People with healthy digestive tracts sometimes pass partially digested/undigested food (corn being the one that jumps to mind).

Yeah that's how I've always imagined it and seen it in photos etc. but this stuff does seem like how I would imagine dehydrated mucus to be.

If it's not something people who do have mucous are familiar with then I guess maybe you're right and it's just partially undigested food.


The other thing is that I did cry a lot yesterday and swallowed a lot of my own nasal mucous. I know I'm obsessive in thinking about these things, sorry.

 

[Anonyworry]

I have just done another small BM that was quite solid but it did clearly have a thin layer of clear mucous around it. Hopefully that's normal..

I spoke to my GP and I'm going to have a calprotectin done.

 

[24601]

That definitely seems like a good place to start.

Reading back over your posts, I do have a question. What has made you think that the sudden onset you observed of your symptoms is suggestive of Crohn's?

 

[Anonyworry]

That definitely seems like a good place to start.

Reading back over your posts, I do have a question. What has made you think that the sudden onset you observed of your symptoms is suggestive of Crohn's?

It's more that I didn't think it was suggestive of IBS I guess.

 

[Anonyworry]

Hi guys,

After a few days on citalopram and diazepam due to my anxiety getting very severe I noticed my bowels starting to return to normal.

However I have woken up this morning with another small mouth ulcer on the gum of my teeth.

This is now the second in one month, I can't recall having had that happen ever before.

I am very worried once again, and not sure how much of a red flag this is.

 

[Clash]

I'm not sure how prevalent one ulcer is as my son, in the beginning, would have many during a flare. Maybe someone else has experience with this scenario.

Might be a good idea to get your vitamin levels checked. Even those without IBD can become deficient in B12 and this can cause mouth ulcers.

 

[Anonyworry]

I'm not sure how prevalent one ulcer is as my son, in the beginning, would have many during a flare. Maybe someone else has experience with this scenario.

Might be a good idea to get your vitamin levels checked. Even those without IBD can become deficient in B12 and this can cause mouth ulcers.

I went to see a dentist just now and she said that the ulcer didn't appear as you would expect with IBD, that it seemed like a normal aphthous ulcer probaby due to stress.

You see for me even as a doctor (albeit a very junior one) we learn initially just sort of.. Tick boxes for diseases. I know that "crohns can present with recurrent mouth ulcers" but we aren't taught what type they are etc. I feel like knowing a bit but not a lot is terrible for health anxiety.

As you say the dentist said that crohns ulcers tend to come in little cobblestone clusters, last quite a while and are quite deep.

I'm sorry to keep bothering you all with my anxieties, I'm hoping when my calprotectin is back I'll be able to put this bac and forth to bed one way or the other.

 

[crohnsinct]

I am glad the dentist put your mind at ease a bit. When was your sample handed in for the FC test?

 

[Anonyworry]

I am glad the dentist put your mind at ease a bit. When was your sample handed in for the FC test?

I handed it in last Thursday so apparently it could be a few more days/a week.

I do feel like a bit of an idiot for not thinking that there would be a difference between ulcers of different kinds and that an aphthous ulcer would not necessarily be related in the way that people describe "ulcers in IBD".

 

[Anonyworry]

Hi guys,

Still waiting for my calprotectin.

A week ago I was started on citalopram and diazepam and my symptoms resolved entirely. I had no bloating and no diarrhoea.

However all that progress seems to have disappeared in the last 2 days and I am back to having morning bloating with pretty loose stools.

I was wondering if anyone knows if this is particularly characteristic of anything? I am really confused about my symptoms still and I don't know if I should continue towards scopes even if my calprotectin turns out to be normal.

 

[crohnsinct]

Normal fecal cal results do not typically move a GI to scopes but rather an investigation as to what other cause it may be.

Given your symptoms, I am still wondering about Celiac. I know you said you have no problem eating bread but I am not sure what you mean by that. The problems caused by celiac do not always come on immediately upon eating the bread or food containing gluten. Celiac does not necessarily have to have a high FC value. If none of the Celiac panel blood tests come up positive(and find out how many tests they ran, it is possible to be normal on one and not another so you really need the whole panel run) a GI will likely not do an upper scope (the gold standard to dx Celiac). But as I was prepared to do with my younger daughter you can trial a pull of gluten to see if it helps your symptoms. Just don't do that until you know for sure you are done testing for it and the GI will not move to upper scopes as pulling gluten before testing will affect the results.

 

[Anonyworry]

The doctors are all still telling me it's likely IBS, but I don't know how many celiac antibodies they tested so I can check that.

I did notice that when my symptoms improved they first became very classically IBSy in the sense that I was passing 2-3 very small, hard stools a day. Then they became completely normal with just one normal sized hard stool a day, before everything went downhill again.

They went downhill the day after I had the freak out about the ulcer so possibly it's stress related.

I just find it hard to believe this can all be anxiety..

 

[crohnsinct]

Sure can! Anxiety and stress can wreck havoc on a body! And gastro complaints are the most common! Have you found an activity or counselor who could help you with dealing with stress and anxiety?

 

[Anonyworry]

Sure can! Anxiety and stress can wreck havoc on a body! And gastro complaints are the most common! Have you found an activity or counselor who could help you with dealing with stress and anxiety?

I don't want to bore you guys but for me my life started heading downhill since a car crash this time last year. It gave me eye floaters that triggered health anxiety, and when they turned out benign it moved to one another thing. I have given myself quite a few somatic symptoms of stress, for example "benign fasciculation syndrome" where if I am in a stressful period, little muscles all over my body will periodically twitch. It's not disabling just something you notice when you think about it. At one point I became so anxious I had a period of dissociation.

So yeah I had CBT last year but I'm going to start it again now.

I found out last week I can have an eye operation that is relatively safe to finally cure my floaters, I just want to get my life back on track and at the moment the biggest hurdle seems to be my bowels. I just would have thought if this was anxiety related that I would have developed it already by now!

 

[Anonyworry]

Hi guys,

Finally got my calprotectin back, it was 35 ie. normal. At this point do I just accept that this is IBS?

My only other change in symptoms has been that recently I will find that eg. in the morning before I have passed a motion, I will wipe and there will be a smear there, not mucous but faeces, only a smear nothing solid. I suppose this could be "leaky gas" which I suppose could also be IBS but again it's another thing really playing on my mind.

I wonder if it is just... normal, because it's not making a mess anywhere it's literally just when I wipe, or if maybe it's the effect of diazepam or something?


I will also ask that it was anti-tTGA that was tested for coeliac and may ask for haematinics.

 

[crohnsinct]

That fecal calprotectin result is very encouraging as far as any possible IBD goes.

Most normal cal protectin results will be put down to IBS but it could possibly be celiac or a few other things. I used to have a nifty flowchart that showed possibilities given abnormal and normal readings but can't seem to get my hands on it right now. I will keep looking for it.

Either way, I think you can relax a bit about Crohn's for now and keep chasing the celiac panel and work on stress relieving.

Good luck!

 

[Anonyworry]

That fecal calprotectin result is very encouraging as far as any possible IBD goes.

Most normal cal protectin results will be put down to IBS but it could possibly be celiac or a few other things. I used to have a nifty flowchart that showed possibilities given abnormal and normal readings but can't seem to get my hands on it right now. I will keep looking for it.

Either way, I think you can relax a bit about Crohn's for now and keep chasing the celiac panel and work on stress relieving.

Good luck!

Yeah I've been a bit obsessive about the calprotectin result and four that studies show that a normal result is about as close to ruling out IBD as it gets and that the issue is more with false positives.

I did have the full celiac screen but that on the other hand seems more prone to false negatives so I may have it repeated in say 6 weeks.

Actually for the first time I have met someone personal with Crohns, just be coincidence this week, and you would not even imagine it, definitely a success story despite being through a horrible time when first diagnosed, is currently a hugely successful, active and happy person despite her condition. I know her condition is probably mild but i take my hat off to everyone here for your personal strength and I hope I can achieve it myself someday.