I have a history of SLE, POTs and EDs type 3. When I have a flare up of my conditions, which seems to be ongoing at the moment after having sepsis.
My question is that usually my digestive tract behaves itself. However, I have had a lot of excessive abdominal bloating recently which has meant that I can't fit into any trousers other than maternity trousers.
I just seem to swell up and its so much worse when I stand.
I have had a lot of antibiotics (5 weeks).
I am taking my usual pain meds and laxido which usually take care of things. I've recently had to increase my steroids and am having usual things like cider vinegar, anti inflammatory diet (I'm very strict).
So basically I think I'm doing all the right things but my peristalsis isn't kicking along very well.
My question is, why does abdo bloating happen with EDs??
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happytulip
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I get abdominal bloating amongst other symptoms with apple cider vinegar. I can't do any type of ferment or out come the hives etc. Histamine intolerance can show up later, but in earlier stages it's kinda dose dependant. Sometimes affects you more than others. The "bucket" effect.
Thats interesting, thanks for the reply. I actually find that cider vinegar helps the bloating and has anti inflammatory properties for my SLE. Its strange how different people are affected by different things.
Not sure what medication you are taking, I have EDS 3 with gastric and oesophagus issues etc. I also have Behcet's disease (BD) I was taking medication for this and I blamed this on my terrible bloating but when this got changed to another completely different type of medication the terrible bloating was still there...
Next I changed my diet removed all carbohydrates in the form of bread, pasta, rice, potatoes, anything made with flour, sweets, chocolate and don't have processed foods either, but still the bloating... although I had lost 2 stone with little effort which was a bonus
Next I decided to remove the one last thing that had been constant in my daily life, it was the one medication I had been told should be helping me, I had done a bit of research and yes found this can and does cause bloating. I advised my BD consultant and GP who were against me removing it from my life but I decided to go ahead anyway so I removed my Omeprazole and it worked I have been Omeprazole free for over 12 months and yes I get the odd bloating but it's usually because I have eaten something that does not agree with me I had taken lanzoprazole before that which had the same bloating issues.
Looking back at my letter I was Interested that when I saw the Gastroenterologist years ago he put me on the Omeprazole for a set time only, 2 tablets twice a day for a month I think then daily for a month or so and yet I listened to 2 other professionals who advised I was best staying on this every day.
Recent article states:
Irritation caused by excess stomach acid can be painful, and over-the-counter acid blockers, including proton-pump inhibitors (PPIs) like Prilosec and Prevacid, can be a tempting short-term fix. But these drugs may ultimately make the problem worse.
“PPIs and other types of acid blockers change the pH of your stomach from acid to alkaline, turning it into a nice, friendly place for bacteria to settle and multiply — and produce lots of bloat-causing hydrogen and methane gas,” writes Chutkan. “If you’ve been taking acid-suppressing drugs for more than a few months, it could be the reason you’re bloated.”Irritation caused by excess stomach acid can be painful, and over-the-counter acid blockers, including proton-pump inhibitors (PPIs) like Prilosec and Prevacid, can be a tempting short-term fix. But these drugs may ultimately make the problem worse" full article here:
So true gillian! I’ve explained more about my version of this in my reply, below...but inappropriately long prescribing of daily PPI (+ domperidone for oesophagitis + gastropoaresis), ie 6 years 2003-9, is now acknowledged by the nhs to have aggravated my childhood onset mouth to a*s AID/CTD-related enteropathy...recently even a few days on PPI alongside extra pain meds needed for my spine condition made my GI tract manifestations flare: PPIs are now poisonous to me! And these days medics have to be extremely cautious about prescribing them long term. Confirmation of the harm PPPIs can do to the GI tract is now official...NB PPIs have not caused my GI tract enteropathy which includes bloating & distentiin in its manifestation! This enteropathyvis due to my underlying hEDS + SLE + PID prinary illnesses & their secondaries (sjogrens, small vessel vasculitis etc)
Hi. I have EDS also along with other issues. Get a Gastric Emptying test done and endsocopy which is where you swallow a capsule and wear a device which reads how it is digested. You may have Gastroparesis which will explain your symptoms, but there is no cure! Hope this helps and gives you some answers at least? Good luck.
It might be the anti inflammatory diet that makes you bloated. Some fruit and veggies produce gas and makes you really bloated. I would really recommend to do a fodmap diet (recommend for Ehlers Danlos patients) to find out what is the cause of it. For me it is; apples, broccoli, some leafy veg, beans, onions etc. Those foods are healthy but does not suit my body.
It’s worth trying it out. I hope you find something that will help you.
Hello HT: You know that my mix is similar to yours, and very early onset. My lifelong chronic mouth to a*s GI tract manifestations include bloating & distension. These manifestatiins are now finally diagnosed as being due to chronic progressive AID/CTD-related enteropathy characterised by slow transit dismotility + visceral hyperreactivity + maladsorption.
At 65 this stuff has progressed to the point that my small intestine has become so debilitated that it can’t digest anything other than ultra low residue non fermentables eg plain rice cakes, so gastroenterology & rheumatology & immunology have my small intestines resting via prescription predigested amino acids via Elemental Enteral Nutrition (Nutricia Elemental 028 Extra) long term: as soon as i went onto EEN the bloating & distention went down dramatically. I know that at my univ hospital the gastro multidiscipline feeding issues team has a high proportion of hEDS patients like me in care, often tube fed...so i feel lucky to be able to take enteral nutrition by mouth
And immunology’s daily antibiotics are equally as key to my gastro combined therapy treatment plan as rheumatology’s immunosuppression meds, because the antibiotics keep my enteropathy related SIBO (small intestine bacteria overflow) controlled and my lupus meds damp down the enteropathy related inflammation
The wonderful new official guide to hypermobile syndromes that was published this year includes really good up to date info on hEDS & the GI tract which i’ve found v helpful. if you don’t have it already, think about getting it, here is a link that explains how to (the link to buy it is in the replies):
Hope you figure your version of this prob out soon: it’s miserable, i know!
XOXOXO Coco
I get this at times. Any fizzy drink, or eating certain sweets (I had a terrible episode after pigging out a bit too much on Dolly Mixture once) is guaranteed to do it with me. I generally look about five/six months pregnant when it occurs. Why it happens - I wish I knew. And it doesn’t always follow a set pattern. I’ve had it occur when I’ve eaten nothing which I would normally associate it with.
Whilst I have been on PPIs in the past that’s only happened three or four times and I try to avoid them now - I’m one of those who really suffers from the rebound affect when coming off them. But I used to get bloating long before I’d even heard of PPIs (or other acid suppressing medication) so I can’t really pin it on them.
And your point makes me want to emphasise that in hEDS, meds (eg PPIs) alone are unlikely to cause chronic predispositiin to GI dysfunction illness...instead its underlying health conditions (eg connective tissue disorders like hEDS + any immune disease + any genetic predisposition + environmental stuff) that science thinks cause GI dysfunction illnesses in hEDS...so meds CAN contribute towards the manifestations caused by hEDS GI issues, as can lifestyle management eg diet, excercise etc. But meds are not the only factor causing our GI stuff
This is all explained, better than i ever can, in the new official guide to hEDS published earlier this year + the official article i’ve given links to in my above reply.
Your point matters a lot to me...because i’ve suffered with my version of CTD/ AID progressively debilitating GI tract enteropathy including chronic slow transit dysmotility for 65 years and i cope best when i understand my illnesses as best as is currently possible.
Thanks for all the replies. I am on a PPI but have to be at the moment because of of the meds I'm taking.
My abdominal bloating started way before I started PPIs and I have had a paralytic ileus on 3 occasions. After speaking to my POTs nurse specialist and GP we think its a combination of SLE flare causing a POTs flare which is really slowing up my peristalsis.
I've also recently had sepsis and had to endure the IV domestos that they pumped into me plus the hospital food. I usually follow a FODMAP diet but in hospital they fill you up with sugar, fat and carbs. I really eat carbs and the diet in hospital really messed things up and flared my lupus more. Fortunately I had friends who bought me "clean food" from the M&S downstairs.
I've also had to massively increase me steroid which Barnclown will know will be devastating for me as I had worked so hard to reduce by so much all year. Now I'm back to square one!
Thanks for all of your input. Its much appreciated. Just wish I had a magic wand!
When you find that Magic Wand, hope you’ll share it around!
Am TOTALLY relating to your reply. VVVVV grateful to you for this discussion...sometimes we are just stuck having to live through all this...like right now my nightmare collection of chronic severe lower spine conditions are acting up BIG TIME so have had to take ankylosing spondylitis strength NSAID + PPI long term alongside my steroids etc...all of which triggered a greater degree of GI enteropathy pain, bloating, distention, frequency etc etc etc...i’ll need weeks to settle this down
Only another with our sort of mix REALLY understands what living with all this is like
Hi - my daughter (26) has severe problems with her digestive system. Can hardly eat and has to massage her stomach for hours every day to get air/ matters through, so frightfully skinny now
She takes procalupride to get the gut moving alongside a handful of dulcolax and many glycerin suppositories every day. So sad and feel for you all.
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I had taken lanzoprazole before that which had the same bloating issues. 
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