IM SO SCARED

[Micheal123]

Hi, I am 19 years old and have been experiencing symptoms from I was 12 or 13.. It all Started with a clear like Mucas, then after a while I started noticing that My stool would Become different, I have not had blood in my stool as far as I know but I do tend to get mucas mixed with my stool somethimes. I lived with these symptoms without going to the doctor as I thought it might be apart of pubirty. Then When I was 17 I took the very wrong decision to type my symptoms into google and the first thing that popped up was Bowel Cancer. I automatically panicked and organized an appointment with my doctor. He asked me a few questions and done a recital examination, He then told me he believed it might be IBD but give me no real information other than I would need blood tests and multiple tests at the hospital. I went for my bloods the next day and a week later found out everything was normal bar my liver which was just below normal but the nurse said it was common for my age (17 at the time) to have a low liver. 

I was finally called to the hospital to get more tests done, Including More blood tests and the doctor felt my stomach and assured me I wasnt dying. I was later called for the camera to be put up But I refused and decided to live without medication.

For the last two years I was treating my Symptoms like they where IBS, Noticing that certain foods upset me and others didn't.

Recently I woke up and went to the toilet and green diarrhoea with blood on the tissue paper (Caused from an anal prolapse from pushing to hard). I went straight to the doctors as I thought I might have left it too late.

After talking to my doctor she was Shocked that I have been living with suspected IBD without medication and told me that 7 years of Crohns  Without medication would leave me a lot worse than what I was, she said I would have had A lot more Symptoms and would have been extremely ill. She now Suspects it might be IBS after all instead of the initial IBD a different doctor had told me I had Two years prior.

She also suspects it might be Celiac.

I am going for blood tests next week which I am so scared of because I am afraid I have left it too late.

I have began eating Gluten Free things and Drinking Almond Milk instead of regular Milk and I am now trying a new diet for the week.

Has anyone else had an experience like mine. and is 7 years too late.

Im not Underweight but I am at the Low end of Normal. 10 Stone. Im not pale as far as I know haha.

Thanks

 

[SLLRunner]

Welcome, Michael!

I am sorry you are not feeling well, but I'm glad you are being tested for celiac.  Now is not the time to go gluten free.  Very important: continue to eat gluten until all testing is done because, otherwise, your test will not be accurate. 

 

[cristiana]

Hi Michael and Welcome!

It sounds like you are doing absolutely the right thing.

Just to reassure you that prior to my diagnosis I too had bleeding  - mine was caused by such bad diarrhea I had fissures.  Prior to that probably since my teens I had had episodes of what I would call 'nervous stomach' from time to time and other odd symptoms but it wasn't until six months prior to the diagnosis that things got really bad on a daily basis and I sought the doctor's intervention.  I too had odd liver readings.  My gastroenterologist says this happens to some celiacs.  I was in my mid-forties when all this happened - some people go on for years like this.   And yet make a full recovery, once they are gluten free compliant.  But as SLL wisely says, continue eating til you are through with the tests.

Totally understand that you are scared - a lot of us have been very scared en route to our diagnosis.   So do keep coming back to the forum if you want to chat whilst you wait for the results.  You will find a lot of help here.

All the very best.

Cristiana

[etbtbfs]

Gluten sensitivity affects a much larger proportion of the population than the official 1:133 celiac figure.  You are doing exactly the right thing by kicking gluten out of your life.

[Jmg]

40 minutes ago, etbtbfs said:

Gluten sensitivity affects a much larger proportion of the population than the official 1:133 celiac figure.  You are doing exactly the right thing by kicking gluten out of your life.

Just to repeat the warning above, please don't go gluten free yet. Your doctors need you to keep on your regular diet whilst they're testing. Otherwise you may wind up with a false result.

and please don't be worried, yu are taking steps to find out what's wrong and you have found a doctor who is taking you seriously. This is positive. Trust her and go ahead with the testing, you can always make changes to your diet once it's over, but make sure you keep your doctor informed  

[Micheal123]

Thank you so much guys

[Micheal123]

On 6/8/2016 at 2:55 PM, cristiana said:

Hi Michael and Welcome!

It sounds like you are doing absolutely the right thing.

Just to reassure you that prior to my diagnosis I too had bleeding  - mine was caused by such bad diarrhea I had fissures.  Prior to that probably since my teens I had had episodes of what I would call 'nervous stomach' from time to time and other odd symptoms but it wasn't until six months prior to the diagnosis that things got really bad on a daily basis and I sought the doctor's intervention.  I too had odd liver readings.  My gastroenterologist says this happens to some celiacs.  I was in my mid-forties when all this happened - some people go on for years like this.   And yet make a full recovery, once they are gluten free compliant.  But as SLL wisely says, continue eating til you are through with the tests.

Totally understand that you are scared - a lot of us have been very scared en route to our diagnosis.   So do keep coming back to the forum if you want to chat whilst you wait for the results.  You will find a lot of help here.

All the very best.

Cristiana

So You had symptoms in your teens and got it diagnosed in your 40s?? So is that a good sign that Im not dying? lol

[cristiana]

Hi Michael.   I was silly.  I went through stretches of having bad stomach pain and diarrhea - usually at times of high stress - and because IBS was so talked about I assumed (always dangerous!) that was what it was without ever checking with my doctor.  

Things got a lot better for a while - not sure why.  Then they got a lot worse - hence I was finally diagnosed.

I live in the UK and very sensibly a lot of literature is now aimed at persuading people with IBS to get checked for celiac disease as there has been a lot of misdiagnosis.    You will see from this study that this side of the Atlantic it is estimated 36% of Celiacs are misdiagnosed with IBS.

Open Original Shared Link

Whilst everyone's story is different, I think your symptoms could well indicate celiac disease so you are doing absolutely the right thing getting checked out.  As my doctor told me when I was in 'the waiting room for diagnosis', "Just see where this leads".  One step of at time.  There are lots of chronic conditions of the gut but many are eminently treatable.  You just need to find out, either way.  When do you get your results?  

 

 

[Treece68]

I was diagnosed with IBS after a month of pain and missing school in 2003 because the doctors simply could not figure out what was wrong with me. Now 2016 after 4 months of pain I have celiac took me 4 1/2 weeks of gluten free eating and I feel so much better. It is going to be OK

[Micheal123]

16 hours ago, cristiana said:

Hi Michael.   I was silly.  I went through stretches of having bad stomach pain and diarrhea - usually at times of high stress - and because IBS was so talked about I assumed (always dangerous!) that was what it was without ever checking with my doctor.  

Things got a lot better for a while - not sure why.  Then they got a lot worse - hence I was finally diagnosed.

I live in the UK and very sensibly a lot of literature is now aimed at persuading people with IBS to get checked for celiac disease as there has been a lot of misdiagnosis.    You will see from this study that this side of the Atlantic it is estimated 36% of Celiacs are misdiagnosed with IBS.

Open Original Shared Link

Whilst everyone's story is different, I think your symptoms could well indicate celiac disease so you are doing absolutely the right thing getting checked out.  As my doctor told me when I was in 'the waiting room for diagnosis', "Just see where this leads".  One step of at time.  There are lots of chronic conditions of the gut but many are eminently treatable.  You just need to find out, either way.  When do you get your results?  

 

 

I have to get blood tests done next wednesday. My auntie has told me the same as the doctor that if it was something that would kill me.. I would have already been dead. I feel your right about the stress, I have began trying to relax alot more and already I feel alot better.

[cristiana]

Michael, well done for booking those tests.  

I can only speak for celiac disease but if you have read other posts on this forum about stress you will see that anxiety and depression are often very common before diagnosis.   I have never been exactly laid back but prior to my diagnosis I was experiencing terrible out of the blue anxiety - so bad I didn't know what it was at first!  Once I realised what it was I decided to try to take some steps to tackle it.   I've posted a lot on the forum about it.  

Anyway, it was discovered that I had very low B12 and was iron anemic - my doctor put me on supplements and that helped tremendously.  It is worth getting those levels checked out,  as well as vitamin D.  I expect they will check them but if they don't, request them.  If we have damaged guts our absorption of these and other key nutrients is compromised.

Our emotional well-being can have a big impact on our gut - hence the expression 'nervous stomach'!   Try not to spend too much time mulling over the problem - I used to force myself to do things like visit a friend, even vacuuming the lounge rather than sitting around thinking about feeling terrible, and although I didn't always feel like doing something, I usually felt better for it.

[GFinDC]

Hi Michael,

Getting the testing done is a good thing.  I hope you saw the advice about staying on gluten until all the tests are done though, including an endoscopy.  After the endoscopy and test results are back is the time to go gluten-free.

There are lots of people who are willing to help you this forum. so do come back and update us when you get your results.  Celiac disease is the only autoimmune disease where we know the trigger, and can control it.  So we have a big advantage over people with other AI diseases.  We can make a huge positive impact on our health by controlling our diet.  

[Awol cast iron stomach]

Hi Michael,

I hope your testing leads you to more a definitive answer and you are well on your way to improved health. I am on this journey too being formerly told IBS but with my husband's support realize it might be gluten. I got glutened In March and have had a range of emotions as I try to process this.

Try to focus on the relief you will experience of catching on to this while young and getting on this healthy New path ASAP . Glad your Dr. is on the case. My biggest feelings I grapple with currently is frustration and disappointment for falling through the Celiac cracks all these years. I'm glad your symptoms got you to this path of diagnosis the sooner the better. Best Wishes and to your health. 

If you focus on the path of discovery you'll leave the fear behind.

[Micheal123]

Hi Guys Just a wee Update.

Got The blood tests on Wednesday, Went very well didnt faint haha Just waiting till Tuesday for results.

My medication the doctor gave me has helped me alot with symptoms.

I have been told im severally Anxious.. Last night had Diarrhea but bloody mucas but Im almost certain the bloody mucas was from pushing too hard..

I have decided if I get Bloody Mucas in stool again, I will go straight to the doctors. Im going there later to pick up a prescription  so I will tell them about Last Night ..

Thank you all so much for your amazing support

Have a Nice Day

Peace, Love 

Micheal x

[Jmg]

It's good to hear you're making progress Michael and that the medicine is helping. Hopefully the blood tests will give you and your doctors some answers.  

In the meantime, you mention anxiety. There's a lot of advice on the web about dealing with anxiety, I quite like this one:

Open Original Shared Link

it's quite long but it has a lot of interesting information in there. 

All the best!

Matt

[Treece68]

Do you have your results back yet?