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Ehlers-Danlos Support UK
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EDS and eating problems?

Hi, does anyone else have stomach problems relating to hEDS? I’ve been constantly really bloated and an hour after I eat feel like I’ve been stabbed in the stomach! I eat a mainly organic diet with no processed foods, and although I take dihydrocodiene for dislocations don’t have anything else that could cause this, and it’s keeps being suggested it could be hEDS related, I only got diagnosed a year ago so am a bit new to all this! (On a plus point I’ve lost 3 stone and it’s been really good for my joints, so that’s something)

:)

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I have been up all night in a load of pain, with a strong reaction to a pizza I ate the day before. I was very bloated, with my abdomen 'tight' and waves of pain as parts of my gut cramped over and again. A bit like food poisoning but without 'the sweats'.

I know that many with hEDS also have food intolerance and ibd type symptoms. Causes seem to vary and include dairy, meat and my own personal trigger, random wheat.

Normally I eat a low carb diet which keeps the chances of this occuring low, but I 'treated' myself.

One way to check what food type is causing it would be to use a food intolerance test. Alternatively, try removing one food type for a couple of weeks - an exclusion test.

Bear in mind that is it not always constant - mine is very random and occasional. I knew someone with hEDS who was gluten-intolerant for a year but then became tolerant again.

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I used to be like this all the time bloated with severe pain at times under my ribs.

I removed all refined carbohydrates from my diet and like you eat mainly a plant based diet, on the occasion when I have refined carbohydrates mainly eating out and at relatives I do get a reaction BUT I also had another huge trigger I knew nothing about until I carried out a big process of elimination with foods and the only thing left for me to remove and try and get rid of this daily bloating was the very thing I had been given to protect my stomach and that was Omeprazole... I reduced this to every other day then got rid of it altogether and gone was the bloating, this was over 12 months ago, the only time I get bloated now is literally through refined carbohydrates but not nearly to the same extent.

I did a lot of reading about this and found I was not alone.

Don't forget that some drugs such as dihydrocodeine increases transit time through your GI tract, causing a general slow down of traffic in your digestive system, and as a result of the delays, motility problems and lots of bloating.

Hope you can get some relief really soon.

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Glad you dropped that medication. Generally people require more stomach acid for digestion as there's inhibition through inhibited organs like the gall bladder, as opposed to less. So nice to hear of your win! 😄

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Hi - sorry to hear you are suffering. Can relate to your problems, my daughter (26) was diagnosed with hEDS in April-18. One of her main problems (apart from constant pain, fatique, joint problems) is severe gastro problems. Bloating, pain, contipation, on and off paralysis of her intestines etc.

She can only stomach Ensure Plus Juce protein drinks in the morning/during the day or fresh vegetable/fruit juices and she deals with the nausea and bloating by taking Domperidone . For constipation she has been prescriped Prucalopride (from prof Aziz, neuro/gastro specialist). Both seems to give her some relief. She can’t tolerate gluten and too much fiber in her diet. Hope you find something that works for you. 😊

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Hey

I got diagnoses this year thought it was fibro but now there more then sure it EDS.

I have sever digestive issues and was told by my osteo that this is normal as we are not only over mobile outside we are internally to... i was told my colon was very kinky lol a kinky colon which makes it hard for my food to go through.

I therefore gave up red meat , dairy and gluten , and any stodgy kind of food... which has worked a treat. Plus added bonus lost 2 stone.

I also eat alot of anti imflammatory foods ie green foods. Lotsa fruit and veg.

I take a high dose of glucosamine and peppermint oil capsules and do yoga which has helped me alot.

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Thanks everyone. I went to my GP and got to have a test for some stomach ulcer causing bacteria and been given Omeprazole to take after the test next week, which I hope helps but gutted I have to take another big pharma medication. Will try cutting out carbohydrates, we have a bio-digester here and anytime bread gets put it we get loads more bio-gas so makes sense that it’ll do the same to a person lol. Will try changing my diet and if that doesn’t work will try the Omeprazole. I’m still convinced it could be hEDS related but fingers crossed change in diet is sorted. My husband is celiac so will try sticking to his no gluten diet for a week and see how it goes :)

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In my experience this definitely can be hEDS-related! I’ve posted on here wcuite a lot over the past 5 years while a tertiary care multidiscipline hosptial team investigated my version of this. Will add a link to one of those posts. For what it’s worth: i think you’re being v sensible about this, and managing it appropriately (i’m 65 and have been managing my version of this since childhood similarly). I hope you figure your version of this out asap. 🍀❤️🍀❤️ Coco

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Here are 2 posts re hEDS gastro manifestations

healthunlocked.com/edsuk/po...

healthunlocked.com/edsuk/po...

I posted these a year ago. Since then intestinal obstruction caused me to loose a lot of weight & become unable to tolerate food by mouth, so i met NHS criteria for prescription Exclusive Enteral Nutrition (EEN...basically v fancy predigested amino acids that give the small intestines a total rest from digesting food - this is not a Sip Feed ie not a nutritional supplement/food replacement like Complan, Ensure etc all these do need to be digested by the small intestines)...i had to start with months of EEN alone and no food by mouth until i became a bit less symptomatic. i’ve been doing v well on EEN for 9 months, still ongoing - although now i can just about tolerate a bit of ultra low residue/low fibre food like plain rice cakes + a tiny bit of plain icecream etc

Meanwhile further tertiary gastroenterology investigations (video capsule endoscopy (retained) + MRI enterograph) have found no Crohns or cancer. Now my medics think i have always had a rare progressive immune dysfunction & connective tissue disorder-related enteropathy, due to my hEDS my + my infant onset SLE (lupus) & simultaneous Primary Antibody Deficiency Disease. Basically, all my life i have been managing Intestinal Insufficiency, which has now segued onto the Intestinal Failure spectrum.

I LOVE EEN cause it has got me back to my right weight and my bloated sore abdo + all the other manifestations are damped down low now! Such a relief after decades of managing constant mouth to a*s GI tract suffering

My case is extreme, but i am a 65 year old complex patient with these 3 v early onset primary conditiins causing chronic dysfunction etc all pver my body. Luckily, am in care at a wonderful NHS university hospital in East Anglia...but i do WISH i could come to see hEDS expert consultants in London just for their thoughts on my stuff...

And this link gives you a great recent discussion here about us & gastro issues:

healthunlocked.com/edsuk/po...

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Thanks so much for that, those are really interesting reads. I have MS as well so was wondering if my weird immune system is impacting on it too. I’m glad you’ve found something that works for you, really hoping this doesn’t last too much longer. I’ve got a really good and supportive GP too so that really helps.

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Thanks for explaining immune dysfunction is in your mix too: makes sense to me! Am so glad if anything in those links helps you get your head around this...am also so glad your GP is good & supportive - the info source links in these discussions might help your GP too (my Gastroenterology dietician rushed out to buy herself a copy of the wonderful new hEDS Guidebook and is THRILLED with it). Hope you’ll let us know how you get on XOXO

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Barnclown - you are such an inspiration dealing with all this, and sharing with us too.

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Am so glad jay...this stuff is v personal isn’t it...a bit like talking about mental health more, i’m relieved everyone is talking about lower GI issues more too... all my life i’ve had to fight VVVVVV HARD to figure out whassup in my abdomen etc, cause the medical establishment kept stonewalling, gaslighting & occams razoring me...and well intentioned complementary therapists just advised me as if i was a “normal” person. Basically, i managed by listening to my body & giving what it was asking for...yes i’ve had to have lots of investigations, several surgical interventions & some prescrip meds, but lifestyle management has been KEY to slowing the relentless progressiin from intestinal insufficiency into failure

recently, during the past 6 years of abdomen multi-system i’ve had top gastroenterologists & gps admit to me directly that no one knows much about small intestinal function, that IBS drives the medical profession to distraction, and that urology + gyn issues OFTEN are triggered by & interrelated with gastro issues. Now i am DELIGHTED our hEDS experts are OPENLY focusing on the gastro issues of hEDS & making great info accessible to us...and, after my lifetime struggling with this stuff, i VVVVVV MUCH want future generations of patients & doctors to be frankly & openly & constructively & realistically discussing all this.

Thanks again: your kind words mean A LOT to me

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Yep it's par for the course, slow or fast transit time, which is why most of us get diagnosed with IBS. I personally cannot tolerate hard to digest foods - certain starchy foods like rice, grains, heavy fats. I use digestive enzymes to help break food down and stick to a low starch diet, use sweet potato, riced cauliflower, carrots, etc in small amounts. I can tolerate coconut and almond milk - less joint pain with that. Have smaller meals. It helped with the sliding hiatus hernia I had developed, not due to being overweight. I too lost a lot of weight 1.5stones and under 6stone wasn't a good look on a woman of 54 when I finally got diagnosed after years of suffering. The menopause really made everything bad. I eventually went on bioidentical hormones and the oestrogen helps with digestion, not so great with progesterone but at least I have a couple of good weeks and the bone and joint pain is so much better. I use magnesium at night for cramps which also helps the constipation I had. I manage it all better now but there are times when it's not so good. Fatigue puts everything back. I stay clear of ppi mess, never helped and my brain, muscles, bones and energy needs the B12. Hope you find something that helps, it's all trial and error, we are all different xx

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Stomach problems? I think since I ever breathed. Look at what goes in first (food, water, medication) look at what is in environment first or simultaneous (think bacteria, mold, virus, dust). After getting all those right and removing triggers via avoidance you're very unlikely to have reduced the problem to entirely manageable. Sensitive everything! 😘

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hi, its been well known that dihydrocodiene is a cause for stomach pain, i was on a codeine based medicine and as soon as i came of them it stopped.

I realise you need pain relief but you could ask your GP for a lesser aggressive pain relief. i use nefopam and it does not take all the pain away but has little to no side effects

kev

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I was actually diagnosed with EDS after I started getting stomach symptoms back in 2015. I was treated for a stomach ulcer for months and also tested for helicobactopylori after i started to get pain, nausea after eating anything spicy, acidic eg fruit, curry, alcohol. I couldn't keep anything down at one point and lost around 3 stone in 3 months.

Other symptoms presented such as tiredness, pain (always had pain and "dodgy joints ") and after ultrasound, endoscopy and ct scans my gastro dr wanted me to see rheumatology as he suspected EDS from my symptoms and past history.

I was finally diagnosed with EDS, POTS and Mast cell activation syndrome and with modified diet and taking Lansaprazole and cyclazine daily I am managing my symptoms much better. I have tried to stop them as don't really like taking meds either but my symptoms come straight back and it's miserable so I have just got to put up with taking them for now.

Good luck, I have found going vegetarian and really reducing dairy has helped too.

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It’s been a total nightmare. Ended up in hospital Friday night and haven’t been able to eat for a week, they’ve ruled out h.pylori, parasites, and have referred me to tests with the advice if I pass out to go to a&e, really wouldn’t be surprised if it was EDS related. Got to go for tests and biopsies soon to check for ulcers and stuff. Does anyone know if stomach ulcers are related to EDS?

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Hey

I just kind of fell into this post.

I got dignosed quite recently as i have been wrongly diagnosed with different things for years until now.

Now it all slots into place and makes sense.

All the doslocations and operations blah blah.

So i actually saw a physio who specialises in rhemotology problems.

It was very interesting as after all the mobile test she said “ do u have ibs?” I said “ yes” and she explained that it not just ur outside It also all ur organs that are super stretchy. So u may want to eat little and often so u dont over stretch ur stomach when u eat and ur colon when ur trying to digest and empty💩😂.

I have got gluten , processed, only eat white meat. No alcohol as i find they all inflammed my body.

Is there any supplements u can suggest for the pain ?

I take glucosamine.

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