Trying to trace the actual cause of my digestion issues.
Posted , 7 users are following.
So I'm new here, first time post, apologies if I'm missing some required etiquette.
I've had various ongoing health problems for some years. With the fact that it's multi-systemic in nature this might even be the wrong topic for the post entirely - but that's what I'm hoping to determine.
My issues started about 5 years ago. Prior to that I'd led an extremely active and healthy life style.
At around that point I was given a preliminary diagnosis for a connective tissue disorder (suspected Marfan) but to this date, that's yet to be confirmed (negative blood work or major criteria thus far).
As times gone on I've started to suffer with digestive issues. Which can be a potential related issue to CTD but lacking a 'positive there', I'm addressing alternatives for my low quality of life.
It's been much the same as a lot I've read here already: gas, belching (which does relieve pressure / stressed feeling) changing stool patterns (ranging from normal to undigested food, hard and black, soft and foul smelling) abdominal pain (centred around the lower right quadrant/flank) and continuing general constipation.
As a result of that I also suffer from what seems to be acid reflux, which has been completely uneffected by ppi's such as lansoprazole, omeprazole (and actually got worse on them) along with alternatives like ranitidine. I assume it's directly related.
I've been for various scans; including ultrasound recently for gall/pancreas, general hospital X-ray, heart mri. Blood tested to death and back. Infact the only thing not screened thus far is the bowel, for whatever reason that may be.
Some time earlier it had been suggested I had IBS by a GP and I was prescribed peppermint oil, which made me nauseous but otherwise had no effect.
To add to my list of problems I've been waking up with a racing heart/tachycardia and inconsistent pains in my chest (centre and left side). Things again which can potentially be related to a CTD - but also possibly digestion in isolation and general nerve irritation.
In the background of all this: I have tinnitus at regular intervals, headaches in various locations, a feeling of disorientation and imbalance, tingling in the extremities and a general feeling of being unwell.
The overlap is considerable and my GP just seems overwhelmed by the different symptoms.
I've yet to factor in food intolerance but that's another thing that's been suggested. So I've rotated my diet over the course of weeks to try and see if things resolve with dairy/gluten and so forth. No change there either.
Until I get a definitive answer on my over all disorder, which as yet remains unproven to whether I even actually have one, or which one - I'm left to my own devices.
It's my personal belief a lot of wider problems are currently caused by my digestive issues and the has pressure it creates but it's a concern when you have potentially underlying and undiagnosed issues looming in the back ground as well.
Right now I'm almost permanently fatigued, so this likely won't be the best post! Apologies for that.
To that effect any advice on how to refine / perhaps make the search for answers a little more concise, would be appreciated.
Could IBS be the foundation of my wider problems or sinething else?
The NHS in the UK aren't fast to assign visits to different departments and as such the delays and Incontinuity between departments have been considerable whilst trying to find the underlying cause.
The digestion problem is quite circular, they prescribe me medication that seems to make little difference and I've grown weary of trying different products all to no avail.
Any further suggestions as to what to investigate next would be welcome too as its now been a good many years since I've really had an 'ordinary' day.
0 likes, 41 replies
aveline Amarna
Posted
I second keeping a diary/log of what you eat and your symptoms...there could be a pattern somewhere in this.
Whilst this absolutely could be IBS, some of it also sounds like Pernicious Anaemia &/or Low B12. Check your blood test results for B12 and Coeliac Disease - if you haven't had those tests in all of the bloodwork, that's due in the next batch... Sounds like you've probably had those by now, though.
Don't restrict your diet in any way until you have a true diagnosis. To start FODMAP now, if you haven't been tested for Coeliac, will throw off the results. Same for purely skipping gluten-containing foods. Use this time to see if you can pinpoint any triggers to your own system, while you're getting the right diagnosis.
I'm no doctor, but when I read your "multi-systemic" label, it made me think auto-immune...something like Coeliac, Pernicious Anaemia, maybe Rheumatiod Arthritis... You can search those conditions in these forums and I'll bet some of the posts will resonate with you, especially PA & CD. My son was suffering from a wide range of complaints and I took him to a paediatric rheumatologist, worried that I was wasting her time and he's just a whiny kid (he was 5). She discovered his CD and sent us to a GI for confirmation and now he's 8 and SO much better! I don't have it, but I have B12 deficiency & IBS and my symptoms are a bit like yours (minus Marfan, but some neuropathy symptoms are there).
Hang in there until you get the answers you need!! HUGS!
Amarna aveline
Posted
I will take all the help I can get certainly, so a more comprehensive food diary is certainly the right angle to start.
I'll bare in mind what you said when I'm discussing things with the GP tomorrow. It's difficult with all my background tests going on for CTD because with the frequency of visits and bookings to general hospitals; like the genetics team and cardiology among others; they are sick of the sight of me imagine.
They haven't been very forthcoming with this side of things so I'll try and get a better grip of where I stand with my blood work tomorrow. It's been routinely tested wherever/whenever I've been admitted but whether or not that shows everything that could be outlying or whether or not it needs a more specific examination I'm not sure. Another equiry to make in the morning!
I'm keen to eliminate coeliac now myself on route to an actual diagnosis, thanks for the help <3 >3 >
aveline Amarna
Posted
You're on the right track, even though it hardly feels like it! You can see by how long your thread is growing that you are not alone and we're all coming at it from different angles but still have had similar experiences to yours.
While you eliminate coeliac, please ask for b12 check - if it's CD or PA, you'll need injections to help (for CD you'd only need until your gut healed and could absorb from food, while if PA it may be tapered but always needed). I'm no dr. but my own experience suggests B12 deficiency in there with some other issue/s...GL!
astrozombie aveline
Posted