7 year old chronic nausea, swollen stomach, pain after eating, always cold

[SuperAmoo]

Hi just putting this out there for ideas - DD has had stomach problems all her life that we've managed at home. Mostly recurrent stomach bugs, feeling sick ( rennies have helped the past), intolerance to gluten, dairy, eggs and soya that comes and goes. Extreme vomiting has a baby up to about 10 months. She had a stomach bug on 16 Dec and was very sick, she seemed to recover but since 31 Dec she has been at home with stomach pains, hardly eating, unable to lie down flat to sleep and, especially in the mornings, turning white as a sheet or even green and nearly vomiting. She says she can't lie down flat because the food in her stomach feels stuck and it hurts. I've put her on a gluten, egg, dairy and soy free diet but it hasn't helped, instead she's getting worse. She looks so ill. In the morning when she has to get dressed, she turns blue with cold and is the same when she has to go outside. Going to talk to doc on Monday. Does this sound familiar to anyone? Really worried.

Supermoo.

Keep on battling.
I know it's really hard when they make out you are being dramatic. But you are not and it will be worth the battle.

Good luck and sending you warrior vibes.

Have you had any luck with a gastro referral, at least then you'll see the experts.
Although her diet is free of wheat gluten, gluten is also in barley and rye (so is also in soy sauce, malt vinegar, any cereals with barley malt extract) so is she getting any that way. Although oats do not contain gluten, they are often contaminated with gluten, so coeliacs are advised to only have oats labelled 'gluten free', even then protien in oats is similar to gluten and many coeliacs cannot tolerate them (the recommendation is to avoid all oats for first 6 months of a GF diet).
Ds2 has only just gone GF, but DS1 has been GF since summer and has had no problems with rice and corn, though I do read labels carefully as some brands say 'may contain traces of gluten' and I avoid these.
I remember with my DS1 continually taking him to the GP, and continually being fobbed off. The routine was always the same - check ears, throat, temp- all fine must be a virus. He was so pale and had cold hands even though it was August. You could see his ribs clearly but he had this great big swollen belly (like a famine child). The triage nurse took one look at him in A&E and said ' his colur and tummy are not right'. I could have kissed her, it was the relief that someone else could see it. trust your gut instinct, keep pushing, you know your daughter best.

Thank you - I suppose that's why I'm not sure about coeliac as she doesn't have a swollen belly - but it's her colour more than anything - she looks SO ill. She seems slightly better so she's going to bed now. Does anyone know how long it should take a coeliac to feel better once the offending stuff is out of their diet? (I'm just giving her nuts, fruit, plain crisps, vegetables, tuna, salmon and potatoes).

My DS2 never got the swollen belly. If you are confident she is not having any gluten in her diet and is still ill then trust your instincts that it's not coeliac. DS2 recovered so quickly after he was GF, DS1 has only been GF a week, and though he has other complication at the moment (we've spent most of today in A&E) his energy levels have really improved.
With DS1 I could see improvement almost immediately, he had chronic fatigue, 20 months old and wouldn't sit up, let alone move around. Ist day gluten free started walking across room, after a week alot more active but he had lost muscle tone whilst ill so not as confident
on his feet as he had been. 6-8 weeks before back to his old self
Something else to consider is does she have any deficiencies? DS1 has vitamin D deficiency because of coeliac, has only just started supplements and I'm sure this has helped his energy levels.

Super Answer to your Q is 3 c.3 months (that's how long the villi take to return).

Reason Coeliac is so so lethal/systemic is as it destroys the villi in the stomach (essentially the l'il standing up wafty bits that catch and absorb nutrients from food). As Coeliac is an auto-immune disorder, the body reacts against gluten and the villi are destroyed - hence can be on healthiest diet in world but will be savagely malnourished (both per se and in appearance). There is NO way your GP should have let you leave without a Gastro referral - WHOLLY poor practice.

Most GPs knowledge (if they have it..) of Coeliac is what used to be called 'classic coeliac', i.e. very obvious and rapid digestive onset issues (aka vomiting/nausea/loose poo etc) immed after intake. This is now known to NOT be true - most coeliacs present with either a range of gastric symptoms (hence the frequent misdiagnoses of IBS/Crohns etc; NO symptoms (that's actually scarier in L/Term); or what is known as 'Cryptic' Coeliac - where what even the average GP would not see as Coeliac. Cryptic Coeliac includes Neurological symptoms (suggest google Dr Hadjivasilliou at the Sheffield Hallam - a Neuro who stumbled across statistical irregular frequency of undiagnosed Coeliac in his patients with Neuro SYMPTOMS, but after those with an actual Neuralgia cause were excluded).

One in a hundred people have Coeliac, but it is the single most under-diagnosed condition known to exist - current stats put only 1 in 8 as diagnosed (IE I:100 have it but only 1:800 diagnosed). Long-term effects (please do NOT panic, this is VERY long term effect in context of a Coeliac continuing to ingest gluten for years) are as serious as stomach cancer and bowel cancer. IE it is NOT a trivial condition but it IS very easy to manage once have diagnoses.

DD def WILL need to have gluten in system in order for the blood marker to pick it up, but given how poorly she is now, gluten loading will make her iller in the short-term. Ergo, it is VITAL she see's a Gastro ASAP so that the gluten loading is done under med management but to a point sufficient were it's presence is detectable.

The Q's I asked were all ones that are indicative of cryptic Coeliac presence, hence asking them even though was aware some may seem a tad random (i.e. the skin ones - but is also a dermo link that presents in many way, inc. that post bath type one).

If I were you/it was my DD, I would simply take her to an A&E you KNOW has a good Paed Unit (not all have sep. units), insist on review by most senior registrar on night-duty and remain there until seen by Gastro tomm. You need to know one way or other and once in the system/with a diagnoses, will be a (relative) doddle thereafter. Your worst case scenario is that Coeliac is excluded but 1) that's still one step closer to a proper diagnosis as excludes it; 2) you WILL remain in system with a Gastro who can pursue other avenues of I/V.

All best - and do not take 'no' for an answer anywhere. YOU know your child best.

Oh - tummies. Swollen belly is indicative of 'classic' coeliac'; emaciated belly indicative of 'cryptic coeliac' - ergo would NOT exclude coeliac from your thinking simply as doesn't have swollen belly. Spectrum of symptoms you describe sound like a combination of presence of cryptic coeliac AND then ALL the symptoms you would see in anyone severely malnourished - i.e. poor circulation/cold limbs; appalling pallor etc etc. Hence why SO many symptoms all at once as an undiagnosed cryptic coeliac is dealing both with the malnourishment per se, AND the - vast - symptom spectrum (whether Neuro, Dermo, Gastric) that cryptic coeliacs can present with.

Hope helps. Do please keep updated? Again, all best.

Praying - that is an act of ferocious kindness, to post to help someone else when you have so much on plate. Have been thinking of you so very much, the 'dancing on table' was such a beautiful image in the midst of all. Hope all going as well as poss can.

Super - to clarify re your specific Q re IF is Coeliac/how long recover etc. The 3 months is how long it takes the villi to recover/grow back but if it is what DD has then will start to feel better in shorter time than that.

Repeat from very first post, am NOT a GP, but would repeat even louder what already said AND what Praying has said she would do - DD really needs to get to a paed A&E ASAP as you need a diagnosis, & GP obv failing you (was also baffled by the Domperidone script given GP issued it both without knowing cause, and also without - unless I missed something in your posts - DD actually having the primary symptoms that Dom. is used for). 100% concur with you BTW re the poor practice of issuing drugs to treat/mask symptoms too, but whilst doing NOTHING to progress diagnoses.

Hello all, I thought today was going better - it seemed to be abit better during the day - less nausea and less pain - but she's gone green again now and is saying her stomach hurts more than ever. All she had today was plain hula hoops, apple, grapes, sunflower seeds, pistachio nuts, cucumber, tuna, plain crisps and tinned peaches. I thought she'd be improving by now - with two days totally grain free? Surely if she was coeliac she's be feeling better?! I tried to book an appointment today with a paediatrician at the private hospital locally and was told that although I would pay for the appointment, I could only have an appointment once my daughter had been referred by her GP. Is that how it works everywhere? I keep thinking maybe I'm being silly and she should just go back to school - would you send your child to school with chronic stomach pain and nausea? The school has started hassling me to get her back in.

Wow that sucks!

My DD has been in a similar situation in the past (when she was in Yr 4 and again in Yr 7, now she is in Yr 10) and I took her to A&E. We spent all day there, peadiatrician came to A&E, she was tested for all sorts and a plan of action was drawn up and everything was fed back to the GP. It seemed to be the only was to make progress. More recently my DS was referred to peadiatrician but the waiting list was so so long I asked to be referred privately which does have to be done through GP.
In Yr 4 her abdominal problems were a result of antibiotics given for impetigo and in Yr 7 it was post viral/chronic fatigue. We got no support from junior school at all-never even phoned up to see where she was, but secondary school has been just fantastic and still are as she still has the odd down day. There should be support available via your local education authority for "children not at school" but you may need to plead your case. My daughter had one to one at home a couple hours a week in Yr 7 which really helped.
Good luck and make a big big fuss, and go to A&E. Thinking of you both xxx

She sounds very similar to my own DD, especially over this Xmas period when it was just one bug after another & it floored her :( - at 7 we were in a similar situation too, no real answers bar IBS & the rest I worked out for myself as far as food intolerance goes - like yours, if mine has a long stretch of good health her lactose intolerance goes completely, if she's run down then she struggles to digest both wheat & dairy, she's also intolerant to chemical additives.

At about 8, mine started to have accidents, fractures, sprains, back to back for almost 2 years, often from the simplest of accidents, she also complained of aches & pains, headaches & exhaustion from as far back as I can remember, also at times over sensitivivity issues, with touch, sound & sometimes light, sometimes anxious too, though this was always slightly there, it got worse if she was ill, which generally became more frequent.

Like I say, no real answers for years, fobbed off as growing pains, IBS & picking up various bugs, over time I worked out how to manage it all holistically with diet & supplementing with spirulina if I was worried she wasn't eating well or it was passing straight through her, using things like manuka honey & turmeric to calm her stomach/IBS as needed -

Her IBS was mostly under control bar a bad few months when nothing seemed to work & then by chance we realised it was her preventative Asthma inhaler that was making it all worse, stopping that was pretty much an overnight cure of the ongoing bad IBS symptoms, though she did stil ave flare ups, we could usually pin point a cause, diet or stress.

Anyway, eventually we realised that DDs extra bendiness wasn't normal, ( it was to both me & DH as were were the somewhen young) & thanks to an awareness flyer doing the rounds on Facebook we suddenly realised there was something that strung all DDs symptoms together - Hypermobility Syndrome - she was finally diagnosed just before Xmas & it now all makes sense - in that she's getting older (10) & hormones play apart in it getting worse. - it's a defect in the collagen that can affect every thing from skin to stomach to joints & can be mild, or severe, or vary

• it also means she has a fibromyalgia like over sensitivity to pain - if she's ill or run down, then it's like the volume button on her pain signals turns up - IYSWIM - inbetween she can be healthy & bouncy & full of beans, but her slack joints mean her body works harder at doing al the normal stuff, so she can get over exhausted more easily, so run down & ill.

She does also get the painful lymph nodes in her stomach - Mesenteric Adenitis with every even minor illness she gets, this isn't uncommon & could well be your DDs problem alone, but in my DDs case she feels the pain of it more so, because of her hypersensitivity, it can get so bad they have us rushing her down to A&E with threats if suspected appendicitis, so it IS very painful for her & can make her feel sick, exhausted, look grey, dark circles & not want to eat, but though it looks & feels like a stomach problem is actually isn't

If you DD is flexible, good at ballet, gymnastics etc, then look into HMS, if not, then look into Mesenteric Adenitis
HTH

I should add, temp control issues are also common with HMS, not saying it isn't Coeliac - but that was ruled out for DD early on - one thing though, when they do the coeliac blood test, make sure she loads up on gluten before hand, the tests aren't accurate if not - DD had to have it twice, as we weren't told that & our GP didn't ask what DDs diet was like & just presumed she ate lots of gluten foods - like you, if she's flaring up, we know to cut out stuff she doesn't tolerate well, wheat & dairy in her case - she's not allergic & is fine when she is well, though we don't give her a lot of it anyway - so bear that in mind if you are cutting out gluten now -

good luck - I feel for you & her, been there, done that & it is soul destroying :( - I'm with the others, kick your GPs backside xx

Jump the queue, take her to kiddies A&E xx

Superamoo - what brand where the crisps? KP plain hula hoops state 'may contain gluten and wheat' on their allergy info, and every packet of Walkers crisps that I've looked at states 'may contain traces of gluten'. I always go for pombears and plain Kettle chips as these both state gluten free on the label. Crisps are prone to contamination if the factory also makes flavours that contain gluten.

Oh pants I just looked at the hula hoops packet - you're right. I'll make sure I don't give her any more hula hoops. Thanks everyone for all your comments and suggestions. She is very good at ballet and swimming but I wouldn't say that she's uber-flexible - I will look into it though. I just want her to have a scan so we can rule out a tumour or growth first and foremost. She says she feels like there's a cannon ball in her stomach and she says she can't lie down because the pressure on her stomach is too painful. I think I'll let her get some sleep and take her to A&E tomorrow if she's still in pain.

Actually Supermoo that is pretty much exactly how DD describes the Mesenteric Adenitis - it is literally swollen glands, so there is a swelling there, possibly more than one & it can be painful - it's lymph glands fitting a virus, but very inflamed & painful - though this last bout, DD also had a partial blockage in her bowel, she was in agony, didnt sleep for days & looked like death - it took A&E to diagnose it all & a dose of Senna to sort it out, she still had the gland problem for a few days though, so was still in pain & looked ill, just not agony as she had been -

Sorry I can't link, don't know how on the iPad, but google Mesenteric Adenitis good luck, hope you get help & answers soon

Super Hula-Hoops are gluteny - that is one of the probs of G/F as people can cut out what they believe to be gluten (usually the obvious things like bread, cereal, pasta etc) but STILL be ingesting gluten. Food manufacturers use gluten containing products to 'pack' food out, and then there is the issue of poss cross-contamination in prod'n (Hula Hoops good e.g. of this).

I think I'll let her get some sleep and take her to A&E tomorrow if she's still in pain. Super, clearly only you can decide what to do, but the clearest and firmest advice (apols, aware I sound strident here but I AM genuinely concerned) I can and will give you is to PLEASE drop the 'if' and just take her to A&E with Paed Unit ASAP. Is manifestly SOMETHING seriously not right even if her symptoms DO alleviate for today, so please please PLEASE take her today. (Am sending this with love and kindness, NOT criticism so please don't take it in any way other than care from another Mamma who does, unfortunately, know more about this than she'd have chosen to and who IS really worried about your DD). Please let us know how got on?

Super,

I think it is a really bad idea to exclude food groups from children without it being recommended by a medical specialist and without adequate supervision. How are you ensuring she is getting all the macro and micro nutrients that she needs? It always scares me when amateurs recommend excluding food groups from childrens' diets. It just is not that simple and you need to be really careful that they are getting enough calories as well as enough iron and all the other vitamins, which may require supplementation.

You sound like you are having an awful time and really need your daughter properly investigated under a paediatric gastroenterologist. I would push for an emergency referral . Not sure the A&E route would do it for you as, unless there is something obvious like a blockage, I doubt they could schedule all the tests that you need. If you can afford it, I would book a private appointment. If not, I would sit on your GP (metaphorically) until you got an emergency referral to someone who could really help you. It is just not good enough to leave a child in pain and unable to eat properly.

The problem with her symptoms is they are too general for anyone to guess a diagnosis. Nausea and pain could come from the gallbladder, liver, appendix, spleen or gut. They are all linked. And it could be caused by a virus, a bacterial infection, some kind of immune problem or intolerance or even a tumour.

I just don't think people thinking that the symptoms are the same as their children who had one of the above is that useful (sometimes with v specific symptoms it is). It could be many things but without scans, blood tests, endoscopies, colonoscopies etc, you are just not going to know.

I disagree larry I'm sure the OP is sensible enough to take our experiences with our own DCs as ideas, rather than fact for her own DD - knowing others experience can make us better equipped to pin point symptoms to pass on to our Doctors, this can be especially useful if the symptoms are as you say very vague & varied - as was the case with my own DD - in our case it took years for our Doctor to finally take things seriously, she didn't diagnose DD, I did, with the help of info such as is posted in this thread - it then took a fight for me to get the required referral - after years, it took the specialists 15 minutes to diagnose I was right - I'm not in any way medical, I just did my research, which i suspect is kind of what the op is doing here - gathering info & seeing what fits her DD.

I do agree cutting out whole food groups can be dangerous though, it needs careful thought, investigation, learning well on nutrition & often supplements of some sort of another - ideally that would be done under medical supervision, but sadly if my experience is anything to go by, then by the time you actually get heard & get to see anyone, your DCs have been unnecessarily ill for years - getting a gastro referral for my own DD was easier than the Rheumy one, but still took a long time - seeing the nutritional therapist with her, longer still - only to be told I had already Sussex it all out myself & was already doing all the right things - by the time we got there, if I'd just sat & waited & done nothing to help DD myself, then she would have been extremely ill indeed & would probably have never made it to school for months on end, so yes, not ideal that we have to self educate & find ways to treat our DCs in these situations & in an ideal word you would be right, but sadly IME as far as GPs & NHS referrals go, it's not an ideal world - we had far more joy with paediatric A&E

Rockin,

I too am a fan of doing my own research and often get it right. I agree it can be useful to ask a doc if they have considered X, Y or Z. But, if you self diagnose and treat, it can be very dangerous. For instance, how do we know the OP's daughter is not anaemic now? Is she having regular bloods done? Without red meat it is hard to keep iron levels where they need to be. Feeling cold and lethargic are both symptoms of anaemia. Maybe what she needs is a large rare steak...but maybe it isn't, we just don't know. Some of the conditions being suggested are 1/1000 or lower. Of course, she may have them, but they are extremely unlikely. Meanwhile relatively common disorders are hardly discussed.

People must do what they want and, if they use suggestions wisely, they can be extremely helpful. The reason I posted is that it seems (and again, maybe I am wrong) that huge groups of food are being cut out of a child's diet without appropriate supervision or monitoring, which could actually be quite dangerous. If I am mis-speaking, I will just be ignored, which is fine. If not, though, I hope the OP will take note and get her child the appropriate tests and supervision etc, which I appreciate is not easy.

I hadn't read the OPs posts that way, she seems sensible so I doubt it's the case & I expect she's approaching the diet issues with common sense - but yes you are right, if that was the case then it definitely needs pointing out as it can be a mine field balancing a restricted diet, especially with DCs