Diagnosis help please - what next? - Crohn's and Colit...

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Diagnosis help please - what next?

Laundretta
Laundretta

Starting around a year ago, my 18 YO daughter started having bloating and pain in her abdomen. This progressed to cramps and blood and mucus in her stools. The GP tested for bacterial infection (Clear) parasites (clear) and inflammation markers seen in IBD which were High. her bloods were normal other than a high inflammation marker, which went down on a re-test a couple of weeks later. She was referred to a consultant. She's had a colonoscopy with biopsies, which we are told are 'normal' and she's had a camera capsule Upper GI which is also 'Normal'. She has eliminated some trigger foods from her diet - mostly beans and chickpeas etc which cause gas. She's not sure if there is bleeding any longer, but other symptoms persist. She is also easily fatigued, her knees are sometimes puffy and sore.

Over the last month she has been taking Vitamin D and a decent B complex supplement plus some probiotics such as Kefir and Biomel, but she doesn't report any difference in symptoms.

She has been referred back to the GP, basically with a "there's nothing wrong with you" diagnosis.

What do we do now?

Thanks in advance XX

9 Replies
oldestnewest

I would request a cal protectin (one word) test, which will give an inflammation reading from her faeces. If this is high, then I would request a referral to St Marks Hospital at Northwick Park, which is, a centre of excellence for all things bowel related.

The hospital really is Tops for Bottoms, and is based in North West London (Harrow)

Laundretta
Laundretta in reply to FRreedman

Hi

Thanks for the reply. She’s already had a high calprotectin result.

This is what convinced the GP to refer her for. We’re in Sheffield.

Should we ask for a further CP test?

FRreedman
FRreedman in reply to Laundretta

I would, and has she been referred to Sheffield NHS Teaching Hospitals Trust, as this is the nearest you have to an IBD speciality centre. I believe they are investigating how IBD affects young lives.

Laundretta
Laundretta in reply to FRreedman

Yep, and they have just discharged her back to the bloody GP without the follow up appointment that was promised irrespective of the colonoscopy and camera pill results. 🤯

bantam12
bantam12 in reply to Laundretta

I have ulcerative colitis which started in my mid teens, it took about 30 years for me to get an official diagnosis and proper treatment having previously been put on and taken off medications when Drs changed their minds over what I was suffering with.

I know how awful this is for your daughter and you of course, I hope she gets some help very soon.

Laundretta
Laundretta in reply to bantam12

Thank you xx

Ceres777
Ceres777 in reply to bantam12

Have you gone under surgery?

Laundretta
Laundretta in reply to FRreedman

Is calprotectin a specific marker for IBD or is it found without IBD signs too? I’m sure there are many undiagnosed IBD sufferers who are stuck with an IBS diagnosis.

FRreedman
FRreedman in reply to Laundretta

I'm not a doctor, just a sufferer. As far as I know the first marker is normally the general symptoms of gut pain, wind, lethargy, exhaustion, and either diarrhoea or constipation. The second mark is Calprotectin level in faeces, ( The higher the level the greater the risk of IBD as opposed to IBS). It is then a case of let's find where it is- colonoscopy , endoscopy, Barium enema, Barium meal. I have never found anyone with first and second marks who has not gone on to test positive for IBD, and I have had this for 51 years. IBS is generally diagnosed when the first mark is reached, but the second is negative. What have the doctors diagnosed your daughter as suffering with?

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