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Could this be Ehlers danlos syndrome?

18 replies

ladyflower23 · 03/03/2025 10:33

My DD suffers with abdominal pain whenever she gets ill and has been diagnosed with Mesenteric Adenitis (lymph nodes in abdomen swelling caused by virus etc). However she seems to get stomach pain/nausea very easily and I'm starting to wonder if it is just the swollen glands causing the issue.
She has had to sit out on sports day a couple of times because some of the activities were making her tummy hurt/feel sick. She had to give up swimming lessons for the same reason. She is now wanting to give up her Jazz dance classes because they do stomach contractions and they really hurt her. She nearly threw up at the last lesson and was in tears when I picked her up. She has also been complaining that her feet hurt when landing on doing a certain type of leap they have to do. And the final thing, her dance teacher pointed out that when she puts her arms out to the side they over extend past her elbows (not sure how to describe this but sort of looks like she has wings in a child's drawing of a bird!). Her finger joints also crack when she bends them back. Been googling as wondered if there could be a connection between these things and Ehlers Danlos syndrome came up. Does this sound familiar to anyone who has this/have DC with this condition? Thanks

OP posts:
Hermyknee · 03/03/2025 10:59

https://www.arprheumatology.com/files/article/1340_prevalence_of_celiac_disease_in_children_with_joint_hypermobility_file.pdf

I don’t know about Ehlers Danlos syndrome but I would go to the GP and discuss having a coeliac test. Do not reduce gluten before she gets a blood test so they get a true picture.

Phunkychicken · 03/03/2025 11:03

I have EDS and that alone isn’t enough for diagnosis, it’s a big long list of things.

Also, since Drs don’t ‘believe’ in it anyway and can be quite eye rolly when you mention it.

It does help understand why things happen but doesn’t fix them or have a magic solution. For me it helped the GP see that it wasn’t in my head yet despite telling the dermatologist that my skin doesn’t hold stitching I still have a big open hole in my face from where the biopsy wound pulled apart the day after my stitches were removed. 7th time this has happened

ladyflower23 · 03/03/2025 11:21

Hermyknee · 03/03/2025 10:59

https://www.arprheumatology.com/files/article/1340_prevalence_of_celiac_disease_in_children_with_joint_hypermobility_file.pdf

I don’t know about Ehlers Danlos syndrome but I would go to the GP and discuss having a coeliac test. Do not reduce gluten before she gets a blood test so they get a true picture.

Thanks for this, it's really interesting. I think she was tested for celiac when she was little and it came back negative. I took her to the doctors because she has been complaining of tummy ache a lot and her poo had gone very pale and floating (sorry for tmi). They did a blood test which I think they said was for celiac but it didn't show anything. She also gave a stool sample that didn't show anything and eventually it went back to normal. I'll ask GP if I can see her records so I can double check that she was tested and also ask if there is possibility of false negatives.

OP posts:
ladyflower23 · 03/03/2025 11:27

Thanks for letting me know of your experience, it sounds unlikely she could have EDS from what you say as she's generally fit and well apart from her ongoing stomach dramas!
I had a friend at school with EDS and her sister also. I remember he sister having a lot of issues with her skin splitting and my friend would have to spend days in bed with pain. I didn't realise doctors viewed it as 'not real'. I'm sorry you have experienced this. The situation with your biopsy sounds really painful and upsetting x

OP posts:
Phunkychicken · 03/03/2025 11:32

It is worth running through the checklist though, and also looking into JHS. Severity of symptoms does not equate to severity of ‘illness’ as it were.

None of my DCs has EDS but one has scoliosis /POTS/splitting skin/migraines and another has awful mesenteric adenitis/tonsillitis /gut issues (malabsorption and dysmotility) so it’s worth looking up symptoms to see if any fit. It does seem, in our case at least, that parts can be passed on sadly.

The gastro I saw said even if not officially coeliac lots of EDS/JHS patients do benefit from giving up gluten

LovelyDayInnit · 03/03/2025 12:08

Have you considered reflux?

Mummybearsthename · 04/03/2025 22:55

Have you considered mast cell activation syndrome? It often goes hand in hand with eds

CerealPosterHere · 05/03/2025 09:20

I have EDS and so does dd. You could google the beighton score and work out a score. Dd is affected with her digestive system with it and struggles to eat but I’m fine.

btw a negative coeliac test a while ago doesn’t mean it would still be negative now. The gene for it has to switch on at some point. Dd also has coeliac, it seems eds and coeliac are quite common together.

farmlife2 · 05/03/2025 09:24

It doesn't sound like what I'd associate with it, but I'm not a doctor, just a patient. You need to get a proper assessment done of all the markers of hypermobility (though that doesn't necessarily mean EDS. hEDS is a form of it that is a bit milder, so to speak). Has she had stool tests done? Is she constipated? IBS/IBD, so many options. She needs a full work up really.

Waterlilysunset · 05/03/2025 09:25

Sounds like my coeliac disease

ladyflower23 · 05/03/2025 21:53

CerealPosterHere · 05/03/2025 09:20

I have EDS and so does dd. You could google the beighton score and work out a score. Dd is affected with her digestive system with it and struggles to eat but I’m fine.

btw a negative coeliac test a while ago doesn’t mean it would still be negative now. The gene for it has to switch on at some point. Dd also has coeliac, it seems eds and coeliac are quite common together.

Thanks. I did the beighton test on her and she scored a 6 out of 9. So from what I understand this would mean that she is hypermobile?
That's interesting about celiac and the general switching on. I didn't realise it worked like that. It would be a nightmare if she was celiac because she's a super picky eater so would be very difficult!

OP posts:
ladyflower23 · 05/03/2025 22:03

farmlife2 · 05/03/2025 09:24

It doesn't sound like what I'd associate with it, but I'm not a doctor, just a patient. You need to get a proper assessment done of all the markers of hypermobility (though that doesn't necessarily mean EDS. hEDS is a form of it that is a bit milder, so to speak). Has she had stool tests done? Is she constipated? IBS/IBD, so many options. She needs a full work up really.

She had a stool test about 6 years ago because of pale stools but the results didn't show anything and then they went back to normal after a while. She's nearly 10 now so I'm not involved with her bowels anymore but she says she goes every day and it's normal poo!

The real problem is the stomach pain when ill (every type of illness, even just a cold it's so bad she can't walk upright) and more recently pain when doing sports.

I probably need to just go to the GP for another review. I know it will likely involve tests which she will hate and might end up none the wiser so weighing up if its worth it!

OP posts:
farmlife2 · 05/03/2025 22:04

ladyflower23 · 05/03/2025 22:03

She had a stool test about 6 years ago because of pale stools but the results didn't show anything and then they went back to normal after a while. She's nearly 10 now so I'm not involved with her bowels anymore but she says she goes every day and it's normal poo!

The real problem is the stomach pain when ill (every type of illness, even just a cold it's so bad she can't walk upright) and more recently pain when doing sports.

I probably need to just go to the GP for another review. I know it will likely involve tests which she will hate and might end up none the wiser so weighing up if its worth it!

Stomach pain can be a symptom of anxiety (without wanting to be dismissive, because it's so frustrating when doctors write things off as anxiety. I'd also ask for a calprotectin test for your daughter, just to cover that base.

Mummybearsthename · 06/03/2025 07:48

My son has EDS, MCAS and POTS. He gets such bad stomach pain sometimes that he can't sit or stand. All 3 conditions can cause stomach pain.

Is the stomach pain only when she is ill? Does she have any other MCAS symptoms?

It's horrible seeing them suffer, isn't it!! Sending hugs

Squeakpopcorn · 06/03/2025 07:52

Regardless of the cause, pain which is impacting on her life to this extent should warrent a trip to the GP.

user593 · 06/03/2025 08:03

Echoing @farmlife2’s post, I get horrible stomach cramps and throw up when I’m anxious or nervous. It’s always been that way. Could it be that sports is making her anxious?

Seeline · 06/03/2025 08:48

My DD used to get awful stomach pain every time she was ill when she was young. The GP said it was the glands fighting infection (so I assume the lymph nodes!). She grew out of that in her teens.
But at 18 she was diagnosed with hEDS. The GP had diagnosed fibromyalgia, but DD asked for a referral - the Rheumatologist diagnosed hEDS.

verysmellyjelly · 06/03/2025 09:40

Many children are benignly hypermobile without having EDS. Only a specialist paediatrician can diagnose.

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