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Original poster

Ongoing stomach issues for DS (14)

27 replies

MrsJBaptiste · 19/01/2022 11:57

I put this on the Children's Health board this morning but haven't had any responses so am hoping someone on here can help...

My poor DS (14) is suffering so much and I just wondered if anyone has had a child with these issues and what they might suggest.

For info, DS is coeliac but this is managed extremely well, he will not let gluten near him and his most recent markers show that they are now completely normal after being sky high before he was diagnosed.

Since the summer, he has days where he wakes up with severe stomach pains and/or is retching and sick as soon as he wakes up or as soon as he tried to eat anything. This isn’t every day but on the days he’s like this, he’s deathly pale and will go back to bed for an hour or two before waking after it seems to have passed. He’s lost a lot of weight recently too as he’s obviously nervous about eating thinking he’ll be sick. This is obviously affecting school and he’s had 6 days off so far since September. Sometimes he’ll plough on and get himself to school because he feels he should but we feel so awful and if I’d been sick and felt terrible, I know I’d want to stay off.

We’ve been to the doctors and number of times, had additional online doctors appointments and are currently waiting for an appointment with Peadiatrics Gastro. We just feel so helpless as the doctors don’t seem to know what to do but it’s awful seeing him like this. He’s gone quite withdrawn and says he feels so down with it all and just wants to burst into tears sometimes (so not normal for a 14 year old boy).

Does anyone have any experience of anything like this?

For info, he’s tried - Gaviscon before bed, Omeprazole (not currently taking these), anti-sickness tablets and is currently on iron tablets.

Thanks.

OP posts:
SpinningTheSeedsOfLove · 19/01/2022 12:32

Poor lad. Could he have IBS on top of coeliac? In eating his scrupulously gluten-free diet, has he upset his got biome perhaps in some other way?

I can't eat gluten ('just' intolerance, not coeliac) and it took me a while to realise I was still in pain because of IBS/constipation/slow gut transit, and I needed to deal with that as well as avoiding gluten. Does that sound remotely possible?

LiveintheNow · 19/01/2022 12:36

Could be lactose intolerant too, often goes with coeliac disease. Also could be something like chrohn's which is also autoimmune, he probably needs more tests.

spiderlight · 19/01/2022 12:46

Has abdominal migraine been suggested? My best friend's son was exactly like this and it was entirely resolved by a migraine preventative medication.

Interested in this thread?

Then you might like threads about these subjects:

14 year olds Children's health General health
Original poster
MrsJBaptiste · 19/01/2022 13:28

Thanks all, that’s really helpful.

One of the doctors has suggested abdominal migraines but just said they’d go in time, he never suggested any medication.

I really hope it isn’t a lactose intolerance as I know we could manage this but that along with the gluten-free diet would just be so shit for a 14 year old Sad But… if it was that, we’d manage.

As for Crohn’s, hopefully this will be picked up in tests when he finally has an appointment with the Gastro clinic. Again, not nice for anyone but at this stage, we all just want a diagnosis so we can work on that. It’s the not knowing how he’ll be every morning that’s so awful as some days are ok, others are so worrying.

OP posts:
Starynight282 · 19/01/2022 13:39

Really push for that gastro appointment, they're the people who will have the answers. Don't just sit quietly and wait your turn, ring every day if you have to, harass them. Poor lad needs seeing urgently. I work in the NHS and consultants can and do bump the people who are making a fuss up the list. Best of luck to you all. I know what you're going through and I know the deep pit of hurt in your gut everyday your child suffers.

Original poster
MrsJBaptiste · 19/01/2022 14:38

@Starynight282 Thank you and your post has made me quite tearful. It's so true, we wake up every morning and can't relax until he's gone to school and even then it's with him looking pale and thin Sad

I haven't got a number for the Gastro team, just a text confirming I'm on the waiting list - can I get the number of the hospital website and phone that? Or do I need to harass the GP surgery for them to chase up? I'll do whatever, sometimes you need to be "that person" to get things sorted!

OP posts:
Peanutssuck · 19/01/2022 15:10

I agree with @Starynight282. My DD got diagnosed with crohns in a relatively short space of time, because I became THAT mother. It wasn't pleasant, but I did actually get an apology from my doctors in the end. You know in your gut that something isn't right with DS. The doctors should listen more to the parents imo.

Epwell · 19/01/2022 15:28

You could try him on the fodmap diet which is good for IBS. Lots of high protein and cut down on raw food. When I had IBS I went on the Atkins diet - it worked a treat, and it is coincidentally fodmap compliant. Also, no cold drinks, only warm/hot drinks - miso soup is a good one, or hot bovril or similar (not sure if ok for coeliacs though). Keep a food diary - you may find a common link to the sickness. And give him a decent quality multi vitamin as he may not be getting enough from his food.

Starynight282 · 19/01/2022 15:35

MrsJBaptiste if you know the hospital he's been referred to then yes you can just ring the paediatric gastro department, find out the names of the consultants and contact their secretaries too. You need to say that it's affecting his mental health now. Has he had his calprotectin levels checked? They measure levels of inflammation in the gut and are an indicator of IBD, its just a stool sample so worth doing. Also, if he's struggling to eat and is losing weight you can buy drinks and soups, they're heavy on calories and easy on the digestion, he can sip them through the day. I'll have a look for them now for you, I can't remember what they're called. It's a terrible thing to go through but once you get a diagnosis you'll feel much better, this horrible limbo is awful.

CurbsideProphet · 19/01/2022 15:41

What a terrible situation for your poor DS. I would look on the hospital trust website to get the number for PALS and ask if they can help get you in contact with the department.
Alternatively check the names of the Consultants and see if they also do a private clinic. (I once saw a Consultant privately and he moved me up the NHS list because he knew I needed urgent scans that couldn't be done privately.)

Starynight282 · 19/01/2022 15:43

They're called ensure, they're available on nhs prescription so they're legitimately used to rest the digestive system but you can buy them, I don't know about gluten content though but I'm sure there'd be an alternative available. An omega 3 and vitamin d might also help.

PoptartPoptart · 19/01/2022 15:46

Could it possibly be the iron tablets causing this?
Some common side effects of taking iron supplements are stomach upset (pain, bloating, diarrhea, nausea and vomiting).
Obviously don’t just stop giving them if they have been prescribed, but it’s worth mentioning and checking with the doctor.
Poor lad.

Starynight282 · 19/01/2022 15:49

That's true, iron supplements are harsh on the stomach. Spatone is a gentle one, its a clear liquid.

Original poster
MrsJBaptiste · 19/01/2022 16:27

Thank you again, this is so helpful Brew

OP posts:
Innocenta · 19/01/2022 16:39

Definitely push for the gastro appointment to be brought forward and made as urgent as possible. Stress the pain and the weight loss. Has the GP done any blood tests?

You could discuss the iron with the GP as it can be very hard on a sensitive gastrointestinal tract. (I can't tolerate it orally at all and have to get mine supplemented by IV when it drops too much) It can cause pain and nausea. But of course it isn't necessarily that.

If I were you I'd ask the GP to request blood tests on an interim basis unless the consultant appointment is brought forward.

Are you keeping a food diary? (Sorry if I've missed this, am hopeless today)

Rodion · 19/01/2022 16:44

He sounds a bit old for this but I'll mention it anyway as I have a child who suffers with it - ketotic hypoglycemia. On the days it is a problem they wake up pale and clammy, with tummy pain and vomiting. It lasts a couple of hours and then all returns to normal. It took a while to figure out what caused it but is now not a problem at all - I make sure they eat enough carbohydrate in their evening meal and it doesn't happen. I just wondered if his coeliac disease means carb intake is very low some evenings and might trigger this. But it's not very common in older children so could be totally off the mark.

GoodnightGrandma · 19/01/2022 16:48

Has he had any help for his mental health ?
Talking this through with someone might be helpful as it’s so very difficult be dealing with this on top of the usual teenage problems. Is there any pastoral care in school ?

Remmy123 · 19/01/2022 16:51

Hi OP

I have replied on childrens health. You absolutely need to push for an urgent referral or go private if you have private health?

It's no way to live. As others have suggested scrap iron tablets as they are harsh on the tummy. Consider a good probiotic ( Dr Formulated probiotics for kids are v good)

My son has IBD,, not the same symptoms as everyone is different, and I gave him probiotics whilst waiting for an appointment.

He also needs a stool test done.

I appreciate the worry as I have been there but please do keep pushing for urgent referral - make sure they are aware of weight loss and struggle wuth school and mental health x

Remmy123 · 19/01/2022 16:59

... also keep a good diary as may coincide with when he wakes feeling sick, include any drinks (fizzy / milk etc)

FrenchyQ · 19/01/2022 17:01

I was going to suggest lactose intolerance too. My husband has been a coeliac for about 15 years but only recently found out he's lactose intolerant too.

masha17 · 19/01/2022 17:09

Sorry to read this. Has he been tested for intestinal malrotation? It's most commonly diagnosed at birth but not always and often overlooked in later years. It can present as frequent vomiting and pain in older children.

Turmerictolly · 19/01/2022 17:17

Can you afford to go privately? Probably about £250 for an initial consultation plus the costs of further tests but the GP may be able to refer for blood tests, test stools etc.

Saladd0dger · 19/01/2022 17:39

Get other vitamins tests. Especially b12 & folate

Original poster
MrsJBaptiste · 19/01/2022 20:18

Thank you so much everyone and sorry for those of you are going/have been through something similar. There is nothing worse than seeing your children feel so awful, no matter what age they are.

I'm definitely going to be harassing the hospital for his Gastro appt but we are lucky that we can consider going private which may be an option to get things moving.

I'm taking everything on board - being "that parent", the vitamins, the high calorie drinks, the diet monitoring and anything else that has been suggested, you have all been so helpful Flowers I've told him to stop the iron tablets as even these have improved his iron levels, it's just not worth it if it has this affect (although it may not be this)

Just thinking of some options and knowing we WILL get this sorted at some point is a positive. He's ok now but I'm already dreading tomorrow morning which is no way to live for any of us...

OP posts:
Tomnooktoldmeto · 19/01/2022 20:39

Fellow coeliac family here, have you tried a gut reboot with good quality pre and pro biotics? DS18 gets like this as do I and often find the bacteria is uneven in our guts but generally settles with a reboot

The only other odd thing I can think is has he recently got a girl friend? Some lipsticks contain gluten and can unwittingly gluten a boyfriend who isn’t aware and so you think you’re leading a perfect gluten free life but are being micro contaminated regularly