IBS - at wits end!

[WeAreSailing]

14 yo DS has always had a 'sensitive stomach' which started as cows milk protein allergy as a baby.
However, He did appear to grow out of this and has been on a full diet since 4 yo.

But for the last 18 mths or so he
Has been suffering from bouts of alternating diarrhoea, cramps and constipation. Virtually a day off school every week because it is so bad particularly 1st thing in the morning.

Poor boy even rang us from a sleepover yesterday saying he couldn't get off the toilet and was in agony

He has seen a gastroenterologist who after testing has discounted the more worrying conditions and diagnosed IBS. He has also prescribed Imodium and buscopan but neither seem to help.

The dietician suggested a dairy free trial but this didn't make a significant difference either.

Am so worried about DS; he looks exhausted, pale and not a spare ounce on him. On top of that is the fear of getting caught short at school and suffering in silence.

Desperately need some help in how we can tackle this or at least ease his symptoms.

Has he had a biopsy to check for coeliac OP? There's a blood test for this but it's not 100% reliable.

No the consultant has discounted coeliac on basis of blood test

www.nhs.uk/conditions/coeliac-disease/diagnosis/
cks.nice.org.uk/coeliac-disease#!diagnosis

Have you read the links above? With symptoms like your DS has I would read up then go back to your GP. Hope you find out what's going on and he feels better soon :)

Am I able to insist on a biopsy?

If you're concerned about coeliac, could your DS try a gluten free diet for a few weeks and see if it helps?

He does need to be eating gluten for the tests to work though (both blood test and biopsy).

It sounds miserable for him - I hope he finds something that helps soon.

Paediatric dietician at hospital put my DC on the FODMAP diet to identify what foods were the triggers. Absolute game changer for us, all symptoms disappeared within 6 days and the culprits were very easy to spot when they were reintroduced.

Thank you
Cable...what triggers did you discover?

Bump

If he's had no biopsy then Id not be so quick to met them rule out Crohns disease or coeliacs. He'd need sedation for an endoscopy biopsy which is why they are keen to avoid it but sometimes it really does help to know what is going on inside.

Does he follow a diet of any kind? As you need to be eating a lot of gluten for any chance of it to show up on the bloods and they’re not overly reliable either. I have two kids with coeliac and both were diagnosed via bloods but sometimes bloods come back negative. It’s definitely worth asking.

This sounds much more severe than general IBS. This isn't normal and not good for a growing body.

I would be wanting to get it properly investigated. Has he had a colonoscopy/endoscopy?

I'd be concerned about IBD (has he ever mentioned blood?), coeliacs or food allergies/intolerences.

Does he have a carb-heavy diet? I am an IBS sufferer. When I started a low carb diet (similar in some ways to the FODMAP), which was for weight loss, I was amazed when I realised my IBS symptoms had completely gone.

If he's eating lots of bread, cereals, pasta and sugar/chocolate, then it might be worth cutting back on this.

But I'd also want to rule out coeliac too.

Hi op
Your son sounds very much like me as a teenager. Pretty much overnight I woke up with IBS out of nowhere.
Mine was predominantly diarreoah but then I would take so many Imodium it would turn to constipation.
When u say Imodium don't work, how many does he take? I ended up taking 2 a day for 3 years, (plus more if i was particularly bad) then when things started to get better I dropped to 1 a day for another 3 or so years.
Imodium slow down the tummy spasms and allow the stool to pass through slower, meaning the water is taken out and the poo is firmer. If taken regularly and a small dose they may start to do something?
I had every test going, endoscopy, colonoscopy, biopsy, mri, ct. One where they inflated my bowel like I was a tyre (bloody awful). Blood tests. Every exclusion diet under the sun
The result was "we can't find anything wrong" . I was told it must be in my head and anxiety causing it.
Don't get me wrong -anxiety DID end up making it worse because i was so scared to leave the bloody house! But that wasn't what started it! It came from nowhere.
I wont lie it ruined my teens. For around 6 years I was skinny as i was too scared to eat (dropped from 9st to 7). I was scared to drink alcohol, I left parties early, I cancelled weekends away due to worrying. I left a friends wedding before food in fear of getting poorly
I spent an entire work trip abroad in my room because all the excursions were a 1 hour coach journey away with no toilet on the coach.
My family were driven insane.
One day I woke up and I didn't have the cramps or the morning diarreoah that I usually had and that was the start of the end. I was 21.
I am now 30 and aside from having maybe 1 day every 3 months or so (I guess like a lot of people do) i am absolutely fine.
I didn't change anything, nobody could explain why I got better but one doc did say your body goes through changes every 7 or so years , almost like a new cycle of life. Some people notice changes in their hair, others their skin, others their digestive system.
I guess that what im trying to say is sometimes they may not have the answer but please let your son know that hopefully this will get better.
In the mean time, push push and push again for every test going. And perserve with the Imodium.
Good luck x