Adult Dd feels sick and bloated all the time and has lost 20% of her body weight

[CoffeeBoy]

She’s 21yo. She does have a few underlying health conditions, EDS, coeliac disease, fibromyalgia, POTS. I genuinely believe she doesn’t have an eating disorder and she is not getting glutened. She has a terrible reaction to getting glutened and it’s very distinctive, projectile vomiting, shaking, slurring her words, collapsing. Only happens like once or twice a year.

she always feels nauseous, if she eats she feels sick, really bad stomach pains. She’s frequently sick. I would say she vomits a few times every week, sometimes for an entire day. So if she eats something for lunch she won’t be able to eat for the rest of the day as she’s in so much pain.

she has been to the gp dozens and dozens of times over the last decade regarding this and they have been useless. She got the coeliac diagnosis 5 years ago which we thought would be the answer and things improved for a bit but then we are back to square one. It doesn’t seem to be a food allergy as it doesn’t matter what she eats. She went dairy free for six months and was no better. She had an an endoscopy 5 years ago which did say she had a hiatus hernia. The GP prescribes omeprazole which seems to make no difference.

she was having a blood test yesterday and they weighed her and she’s dropped from 55kg to 45kg. The nurse to,d her she’s underweight and needs to eat more. Well yes, but how.

she has another gp appointment in a few days and she wants me to go with her which I will. I’m just not sure what to ask for next. Last time I went with her I asked if she might have gastroparesis which people with EDS can get and the GP looked at me like I was insane and said no.

are there any protein shakes, etc which might be worth trying? I actually think she’s incapable of eating now and maybe we need to look at a liquid diet to get calories in?

Have a look at SIBO, I have this along with all the conditions your DD has. It's really common in people with EDS because of slower motility. There's two main types... Hydrogen type generally causes diarrhea, and Methane type (also known as IMO) causes constipation, but you can have both types and they can then kinds cancel each other out. My main symptoms are constant nausea and severe bloating

But I'd also look further into gastroparesis too as in my experience it's not something most GPs seem to know about

And two other things I'd consider are H. Pylori and B12 deficiency (common in people with EDS and/or Coeliac)

Following as this sounds very similar to my 19 year old daughter who is just having tests. I am coeliac so I thought it was that but her tests are negative. She does suffer with her mental health and she is wondering if it is an ED but I'm not so sure. Hope you find some answers.

Poor girl. I am glad she has you to support her. I know from my own experience how frustrating it is to know something is wrong but not be getting answers

Gastric problems can go alongside those other diagnoses. Dd is similar and we are waiting on gastro appointment. Gastroparesis and MCAS are common ways gut affected alongside eds etc

Thanks everyone. I’ve never heard of SIBO but that looks possible.

she was negative for h.pylori and her vit b12 is normal (actually was high last time she had it tested).

i just know if I mention SIBO to the GP they will look at me like I’m mad the same way they did when I mentioned gastroparesis. I’m really going to push for a gastro referral though. Might even look at private doctors as she can’t carry on like this but no idea how much it might cost, we could pay a few £hundred for a consultation but not £thousands for investigation. But maybe we could get some direction and go back to the nhs.

My daughter is coeliac , has PCOS and CFS and she has the same symptoms , she is having blood tests for Addison’s disease after Christmas . I have it and nausea and bloating were my first symptoms ( before I started actually vomiting ) , my mum also had it so it seems to run in our family . Get your GP to do a 9 am cortisol level . Hope your daughter gets an answer soon .

Yes I think your GP is failing you now by not investigating. Definitely push for a referral on those 2 things and if you get no where on the NHS I would go private. Once you have found out what the underlying issue is you can go back to the NHS. Good Luck.

I am assuming they have done the basic tests like blood sugar and sugar tollerance?

Tbf i had a gp tell me this year that adults and anyone over 6 dont get croup, as someone who has been diagnosed by a different gp as an adult with croup and knowing teenagers with asthma that also get croup, I would say that not all GPs are specialist in all the things. It would be impossible. if it is a different GP maybe mention the thing that they looked at you crazy. You might get a different result, you might get reassurance. Thankfully the treatment is the same path so the precise diagnosis for me was not important. But in this case it could be and thus worth asking again imo.

It could well have a psychological rather than physical cause even if she isn’t making herself vomit deliberately. My niece was in a very similar position with regular vomiting and lost a dangerous amount of weight. It hasn’t been treated really but she has been on a feeding tube and gained weight. She is very happy to be fed through the tube.

Was she taking B12 supplements when she got tested? If so, then the result could be falsely high. And if not, then a naturally high B12 level can be another sign of SIBO

You can get home tests for SIBO, they cost about £180 and are actually better than the NHS ones as they test for both types whereas the NHS usually only tests for Hydrogen type

That’s interesting. Yes, she was but had only started taking them the week before so doubt they’d have made much of an impact.

This need investigating - 45kg is a low weight. Keep an eye on her weight and her general health - keep going to GP if she continues with symptoms (and consider a&e if she is worsening and you are concerned).

Most important is to be referred to a specialist - probably gastro. The suggestion to do cortisol is good - perhaps they would do a more detailed test for Addison’s (usually done in hospital - either outpatients or as inpatient) and look at things for thyroid too. There are many medical causes to rule out - I’m sorry you are going through this.

Possibly but I’m worried this is what the doctors think just because they can’t find a physical cause. Easier to write it off as anxiety, stress, heartburn and send her on her way. She’s not someone who is stressed about anything apart from her heslth and she wasn’t stressed about that until she got sick. She’s certainly not enjoying being poorly, but I get what you say it could be subconscious but my feeling is that there’s a physical cause.

She did have a thyroid test recently but a basic one, so they didn’t test for antibodies but said the tests they did do were fine.

Get her tested for Addisons / adrenal insufficiency. Have a google. She will need an early morning cortisol blood test. Nausea, losing weight and stomach pain are all key symptoms and it often occurs alongside other autoimmune issues.

They tested her blood sugar but don’t think she’s had a sugar tolerance test.

Thanks, definitely going to ask for this. I do worry they think I have munchassen by proxy! 🙈😁

btw it was Mumsnet who diagnosed her with coeliac and eds after I started similar posts in years gone by after getting nowhere with the GP so I have faith in you guys! 😁

With EDS/POTS/fibro, gastroparesis isn’t uncommon. It’s delayed gastric emptying. Definitely look into it.

Sorry, look further into it!
I’m coeliac and I have hypermobility disorder but thankfully not full blown hEDS. Your poor DD.

This sounds very tough and I really feel for you and your daughter - my 19 year old daughter has also suffered from severe digestive issues and intermittent chronic fatigue. I would agree with everyone above who has mentioned gastroparesis, I think this is definitely something you should get checked out.

If you can possibly afford it, I would definitely recommend paying for an initial consultation with a private gastro; most also work for the NHS, so they may be able to refer you back to their NHS clinic if your daughter needs any costly testing which you can't afford.

I would also suggest that your daughter has her thyroid hormones checked via a private blood test. We were repeatedly told by our GP that my daughter's were absolutely fine, however it was only when I paid for a thyroid panel via Medichecks we discovered that her Free T3 levels were extremely low (our GP had only very basic testing which didn't check FT3). Once my dd started on thyroid replacement medication, her digestion improved quite quickly. At the start of this year, dd had felt so sick after eating, she started eating less, and then lost a lot of weight which caused her thyroid hormones to drop (we assume) which slowed her digestive system down even further, so she then ate even less - it became an awful vicious circle, or at least this is what we think happened. Eventually her health collapsed completely in March of this year and she was bedridden for about two months.

My dd has made an almost complete recovery over the course of this year, although she still has issues with fatigue. The thyroid medication has definitely helped and she's also taking digestive enzymes which have made a huge difference. She also found the low fodmap diet to be beneficial when her digestive issues were at their most severe, although she's now back to eating normally which seemed unthinkable to the start of this year. She was also tested for Sibo at the height of her illness, although this came back negative.

Good luck to you and your daughter, I hope you manage to find out what is causing her issues.

Have they done a stool test? Couid it be Chrones?

I was going to suggest hiatus hernia but I see she’s already been diagnosed. When mine flares up I drop weight like crazy and can’t keep anything down. Omeprazole seems to make me worse. The constant vomiting continues to irritate stomach lining and sends acids crazy so it’s like a viscous circle. I don’t really have advice only sympathy, I never feel worse than when I have a flare up, it really is horrendous.

Thanks for the further messages. Yes her stool has been checked and her gastro consultant said years ago that it’s not Chrones.

@MasalaDosaMum2 sorry to read your Dd has also been unwell. Think we will definitely have to follow up private consultation as getting nowhere with the nhs. I asked Dd ages ago to do a private thyroid test but she doesn’t want to do the finger prick! I’m going to try and get a gastric emptying scan organised.

@imagiantwitch that’s interesting, I didn’t realise that hernias could flare up like that, just assumed it would be constant so yes that’s possible that it is just the hernia then as she has limited periods where she seems better.

@CoffeeBoy - if you go with Medichecks you can have the bloods done at a local phlebotomy clinic. When you order the blood test on their website it will give you the option of either doing it yourself or having blood taken at a local clinic. My dd did once attempt to do a finger prick test and it was a complete disaster (the blood went everywhere except the test tube!) so we now go to a local clinic. It costs an extra £30 but it's money well spent as far as I'm concerned. Good luck!

Haven't RTFT so apologies if not relevant but could it be FPIES? She may need to do a full elimination diet, such as AIP, to figure it out. If all she's done is cut out dairy then that may not be enough.