My story- What can it possibly be?

[alybaly402]

Hi! My name is Alexandra.
I just turned 18.
I have histroy of UC (mom) and Celiac (cousin) in my family.
I've suffered from severe constipation all my life. I've been on mirilax for, like, ever. I also have Reflux.
Well in the summer of 2012 my stomach started to feel uneasy (just, kind of different). And just before I went to camp I got a HUGE stomach attack. Full on chills, gas, pressure and diahria. I also ended up giving myself a panic attack with it (which made it worse). My parents wouldn't take me to the ER b/c they thought it was all anxiety. My parents took my to my pediatrician who and took blood (I have a negative pcanc and 1:20 p anca) and they put me on a fiber pill.. But said they wouldn't worry. Well things started going downhill from there. Eventually when school started I started to have trouble keeping food down. Whatever I ate, I pooped out and It gave me a stomach ache. My parents eventually took me to a pediatric GI. He ran tests and said I had a high calprotectin level so he did a colonoscopy and upper endocopy (November 2012). He found nothing. He diagnosed my with IBS.
After that my symotoms started to fade. No more diarhia. And I could eat without pooping and stomach aches. I still get stomach attacks (infrequently- but i'm constatnly anxious about them) they consist of A LOAD of pressure, gas, Constipatio that progresses to diarhia, chills, shortness of breath (bc of the pain severity) and I would rank them as a 9 on a pain scale. I really suffer.
My mom recently took me to a new GI (non pediatric) who again ran tests. I again had a high calprotectin level. He doesn't want to do another colonoscopy because he said they other GI did a good job. He wants to do a capsule endoscopy though.
Does anyone know what I could have? I really want some answers. I feel like nobody believes me. Everyone just tells me I have anxiety and I do this to myself. I DON'T!!!
I'll be happy to answer any questions. :ghug:
ps- I really appriciate all the support on this website. Thank you.:ghug:

 

[valleysangel92]

Hello Alexandra!

Welcome go the forum!

I'm so sorry to hear that you've had such a hard time of things "/ .

Unfortunately it's pretty common for people to be labelled as having IBS and/or anxiety, it seems to be a get out clause when the doctors can't say what the real problem is.

Your symptoms could be a number of things, including crohns and coeliac disease.

Do you find your symptoms get worse if you eat a lot of bread or pastry?

I'd advise keeping a food and symptom diary just incase there is a link between what your eating and the severity of your symptoms since crohns symptoms can also be effected by some foods.

The capsule endoscopy should help to see if there are any areas of inflammation in the intestines but because they cannot be used for biopsies they might miss anything that's at a microscopic level.

This isn't in your head, we know that here and we are here for you. You can ask us anything and we'll always do our best to answer you. Keep us posted on how you are doing.

 

[alybaly402]

Thank you so much! It's nice to know that there are people who understand.

 

[Daisy123]

I haven't had a capsule endoscopy but it sounds like your new GI is taking your symptoms seriously. It is possible to have both IBD and IBS, I have both. But pain on the scale of 9 suggests that there might well be something inflammatory going on.