So worried about DS

[WeAreSailing]

DS 13 has been seen by a gastroenterologist with chronic cramp, diarrhoea, constipation type symptoms.

He has had bloods and stool sample
tests and heard nothing back so assume nothing too major (although we do have a follow appt up in 2 weeks).

However DS's symptoms are getting worse with a day off school virtually every week. He wakes up about 3am with awful cramps followed by diarrhoea a few hours later. The poor boy is exhausted, not to mention the work he's missing. He has been prescribed Buscopan but it's not making any difference. Am now really worried about him.

We have requested a GP referral to a dietician but have no idea where to go with this.
Obviously we will tell the consultant that the symptoms are getting worse but can anyone give me a head's up on what I should be asking/what I can be doing in the meantime?

Bump

Sorry to hear about your DS. Don't know what your circumstances are but can you go private for dietitian appointment? I unfortunately know two people waiting around 4 months for initial appointment on NHS...

Poor thing. I would ask about coeliac disease when you go back. Coeliac UK are s great resource and worth looking at before he's seen.

It's so stressful Sailing waiting for an answer isn't it? DD was diagnosed with Coeliac disease earlier this year and I was having some similar symptoms. But blood test doesn't show a problem with gluten for me. However, since cutting out lactose all my abdominal symptoms have gone. Could this be a possibility for your son? He does need to continue to eat gluten though if he is awaiting testing. As previous poster says, Coeliac UK very helpful.

Coat My bloods have always been negative (there's a percentage of people this will be true for) and I was diagnosed by biopsy. If your DD has a diagnosis I would really push fir further testing.

I was lactose intolerant at diagnosis and tbh that was making me feel more unwell than the CD gastric wise.

Sara may I ask what prompted you to have a biopsy if your blood test results were negative? How did you go about it - was it done privately?

I had an endoscopy for an unrelated issue that came back positive for CD. It was a shock but after being GF for a year or so all my other ailments cleared up! With this illness you do not realise how tough you feel until you feel better. It kind of crept up on me.