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Ehlers-Danlos Support UK
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Gastro problems

I have EDS type three and have always struggled with gastro problems. But recently they have gotten worse. My GP is doing a test to check for blood in the stool but if that test comes back fine I don’t think he is going to do anything which is worrying me as I am struggling a lot. My symptoms are:

•early satiety, struggling eating due to nausea and fullness

•bad nausea

•abdominal and stomach bloating, very bad and hurts

•tenderness of the stomach and abdomen

•abdominal pain

•burning feeling across stomach and abdomen

•strange noises from intestines

•very weird noises from my stomach, sounds like a hot water bottle being shaken.

•alteration between constipation and diarrhoea

•light coloured stools

If someone could tell me what could be wrong and what I have symptoms of I’d be really grateful.

9 Replies
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Cannot tell you what is wrong but I share some of them. A fair few people with EDS have either IBS or IBD, so it is worth googling the symptoms of both to see which one fits the best. I have occasional food intolerance for no random reason.

Good luck.

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You might like to read through the non-expert paper on gastro involvement with EDS before you next see your GP:

ehlers-danlos.com/2017-eds-...

And you could also try printing off and handing over to your GP the full peer reviewed paper on it:

ehlers-danlos.com/pdf/2017-...

Often GPs don't understand the full implications of EDS and gastro problems, so they need to learn more about it before they can help treat it.

Good luck!

1 like
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These links to recent discussions here may also help:

healthunlocked.com/edsuk/po...

healthunlocked.com/edsuk/po...

I’ve had 64 years of managing mouth to a**s hEDS-related GI manifestations. 2 1/2 years ago my lower GI issues began a severe sudden on set persistent flare. I’ve been undergoing NHS multidiscipline investigations into the causes underlying this flare and am finally benefitting from a combined therapy treatment plan + convincing diagnoses. So, am wishing you every best wish

Please let us know how you get on with figuring your version of this out

🍀🍀🍀🍀 coco

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Hi Alice2800

I had almost everything you are describing and went along all the avenues with GP and then went to consultant and had cameras said I have esophagitis and my sphincter at the bottom was not as great as it should be, typical for people with EDS, I got put on a course of Omeprazole a couple a day for a month or so then once daily for a further month or so, that was me and things seemed to improve for a while. I was then diagnosed with Behcet's disease and the consultant put me on Omeprazole permanently alongside the first line of treatment, which sadly did not work for the Behcet's so the next treatment was prednisolone (steroid) as well as the Omeprazole, the the stomach and abdominal symptoms continues all over again but much worse so I decided to remove the Omeprazole altogether and within a week everything settled down I am feeling so much better with stomach issues and my constitution appears to be working like normal.

Before ever being diagnosed with Behcet's and not taking Omeprazole I used to have bloating almost daily so removed all refined carbohydrates from my diet so no bread but pasta, rice, potatoes, cakes, sweets, crackers, desserts, I make everything fresh and my treats now are fruit and nuts, things did improve. I recently decided to try 2 slices of wholemeal toast, we were away, and I could not believe I would react in the way I did my bloating was back and gurgling etc. I then decided a week ago just to try some gluten free toast and got no reaction... So Alice maybe you could give removing carbohydrates / Gluten from your diet for a while and see if you have any relief and if you are taking any proton pump inhibitors such as omeprazole which is supposed to stop cells in the lining of the stomach from producing too much acid try giving them a short break for a week or so to see how you feel.

Good Luck, Gillian

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It's par for the course for many of us with eds. The gut is made of connective tissue, food just sits there, not enough peristalsis to move things along and bacteria can grow out of proportion whilst the food ferments. Add into the mix we are likely to experience dysautomonia which means our sympathetic nervous system is often switched on, due to high levels of pain and other stresses when we need the parasympathetic nervous system to be active for rest and digest. I have learnt over the years what helps me. I have to have eat small amounts - don't give the gut that is struggling too much to do. I use digestive enzymes to help breakdown the food as there is less active muscle contraction to churn it around. We also tend to produce less stomach acid as we age and the symptoms of low stomach acid is the same as high. Basically if the stomach needs to be at a certain level of acidity to stimulate the next part of digestion. Also you need stomach acid to allow the absorption of vit B12, essential for energy, bone development, blood cell development, brain and nervous tissue and a side effect of proton pump inhibitors are a lack of B12. Magnesium 400mg at night prevents constipation, I occasionally got the diarrhoea too but things are more normal now. I have difficulty with certain foods, heavy starchy carbohydrates just sit there, aa does high fat. Lectins are generally difficult to digest, even with the digestive enzymes I still get heart burn if I eat bread. Dairy sets of inflammation, my joints are burning within half an hour. Other things cause me problems, citrus makes me itchy. Caffeine also often interferes with digestion because it affects the autonomic nervous system again making the sympathetic nervous system active, fight and flight, too much adrenalin and not enough rest and digest. I make sure I sit and rest for as long as possible. If I get up too soon, blood is diverted away from the gut to limbs and I get indigestion. Long post, sorry, but I wanted to explain why I do these things so I hope it makes sense. Most of it I learned before diagnosis because I was struggling for 20years. I learned a lot from Dr Sarah myhill's website. When I am as diagnosed Dr Hakim said I had dysautomonia and suggested I have 4-6g of salt a day, (we actually need salt for digestion and unless you have high blood pressure or eat a lot of ready meals it is essential to add to food (helped my low blood pressure and pots symptoms), with 3 litres of fluid and an electrolyte drink on waking and before bed. Professor Aziz a specialist in this area also seems to work this way, low fodmap, low allergen

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Oh dear - I hate to say this, but please be sure that your GP rules out ovarian cancer. Your list of symptoms sounds all too much like that for ovarian cancer - been there, got the t-shirt, was diagnosed with and (so far successfully ) treated for ovarian cancer several years before I was officially diagnosed with EDS hypermobility type. As you may gather from the rest of the replies to your post, your symptoms are likely to be something much less worrying, but please, please don't take any chances!

Wishing you all the best,

Barbara

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Hi there- thanks for your reply! To tell you the truth ovarian cancer has been on my mind a lot because I have had a lot of gynae problems too :( spotting, pain, heavy periods, dyspareunia etc. I had an external ultrasound which didn’t show anything but I’m still worried :( because I know it doesn’t always show in early stages. I said this to my doctor and he said he wouldn’t do the CA125 blood test because I’m under 40... I’ve been referred to gynae so probably just going to have to wait til then to get answers 😓 xx

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Here are the NICE guidelines on detection of ovarian cancer: nice.org.uk/guidance/cg122/...

Keep a symptoms diary, especially of the symptoms mentioned in 1.1.1.2, and take those with you when you next see your GP. There are symptom trackers available on the web sites for Ovacome, Target Ovarian, and I think also the Eve Appeal which can help you to do this.

If you are suffering from the symptoms listed sufficiently regularly, your GP should order a CA125 test even if you are under 40.

Good luck!

Barbara

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Hi Alice,

Have you ever been tested for Celiac’s? Your symptoms sound A LOT like mine while I was eating a diet containing wheat/rye/barley. Once I went gluten-free, I became much better!

Good luck to you!

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