Does this sound like Crohns? Are tests 100% accurate

[NicoAndTheNiners]

17yo dd hasn't been well for a while now, started over a year ago and comes in bouts/flares but each time seems worse.

So a year ago was diagnosed with vit d deficency and anaemia. Took vit d tablets and iron tablets.

Main symptoms are tiredness, joint aches/pains, she sometimes gets really bad rib/chest pain which the Drs said was Chostochronditis. Fine one minute and screaming in pain the next, can last a few minutes or an hour.

Feels sick all the time, is sick several times a week when she's poorly but then can have weeks when she's fine.

Regular diarrhea, but then a normal stool the next day, then more diarrhea a few days later.

Heartburn, weight loss, palpitations.

Had blood tests last week and came back with normal Hb but ferritin of 9 which I know is low. So back on more iron tablets.

Checked for celiac, thyroid and diabetes and they're all normal. White cell count also normal.

Waiting for stool results now and have another GP appt next week to discuss those. So I'm guessing there'll either be signs of colitis or Crohns from that? If the stool shows signs of this should I expect a referral to anyone or would the GP manage it?

GP says if stool samples are negative he will refer DD to the hospital to see a specialist - what should we expect at that point in the way of further tests?

Hi Op, I don't have all the answers, but know that the blood test for Coeliac is unreliable (positive is positive, but negatives can be false) and biopsy during an endoscopy is more reliable. With those symptoms, I imagine and endoscopy would be on the cards.
Sounds horrible. Did your GP test for B12 levels? Any tests for autoimmune conditions?

A biopsy will be grim.

It involves a gastroscopy and a small sample has to be taken from the duodenum, however, the test is definitive.

www.nhs.uk/conditions/coeliac-disease/diagnosis/

He didn't test for b12, because I asked what the levels were and he looked a bit sheepish and said he didn't know.

dd asked him about if her bloods had shown any sign of autoimmune disease as we do have a family history of (different and rare) autoimmune stuff. GP explained that there's not a specific blood test as such but what he had requested didn't show any signs which would make him request more tests.

The biopsy doesn't sound good, but I suspected an endoscopy might be next and I guess if they're doing that they may as well as do the biopsy. I hope the sedative is good! She's needle phobic and it was hard enough to get her to have the blood tests done!

A biopsy won't be grim, I assure you. It's done as part of the endoscopy (camera down through the throat) or colonoscopy (the other end) and your DD won't know it's being done, it's just part of the procedure.

You can opt to be sedated for the endoscopy, which I did as I have a fear of vomiting and was freaked out by the idea of having something put down my throat. I don't remember the actual procedure, just flashes of the beginning and end. I was fine afterwards and allowed home maybe half an hour afterwards.

I would also ask for B12 to be checked. You can ask for a print-out of the blood test results. There are lots of people here who could help you make sense of them.

Good luck :)

The stool sample won't indicate Crohn's or US. It has to be diagnosed by colonoscopy.

Sorry, should have been Chron's or UC (ulcerative colitis).

Was she tested with the calprotectin stool test?

Not sure what stool test ,still waiting for results. Think he said something about inflammatory markers in sample which could indicate inflammatory bowel stuff?

They'll test for faecal calprotectin, which can be indicative of inflammatory bowel disease, but is not definitive or specific.

I’ve had Crohns / colitis for 30 years. Diagnosis is better but still v difficult.
Best thing is calprotrctin test done on stool sample - plus it checks for blood in stools accurately too.
Blood tests should have CSR (sedimentation rate - an indicator of inflammation) full blood count, u&e and liver function tests.
These tests differentiate between crohns (which is an ibd) and ibs.
The most thorough way is for a colonoscopy but they will only do that if absolutely necessary.
There are new tests being developed where you swallow a tiny camera in a pill and poo it out. Not sure how widely they are available though.
I’d suggest going to the Nat addict if crohns and colitis website as there is tons of info. They have a helpline too.
Also worth trying: yoga for relaxation, aloe Vera gel drinks, plenty of water and walking. Keep an eye on her weight - weight loss is an indicator too.
I hope she hasn’t got this but it does sound inflammatory related, so keep at it until you get a firm diagnosis.
If it is crohns she would be under a gastro consultant , assisted by the GP.
Hope this helps, good luck to your girl x

Sorry for the typo! www.crohnsandcolitis.org.uk/

I've had UC since 2003 and went on one of the biologic drugs (Entyvio) a year ago and am now in full remission. I had my first ever normal colonoscopy two months ago.

There are good treatment options available now that didn't exist five or ten years ago. The problem with the older medications and alternative therapies is that none of them stop the immune system from attacking and damaging the GI tract. The new biologic drugs can do that.

The iron deficiency could be from her periods and be causing the joint pains and palpitations, and the bowel troubles could be irritable bowel so don't panic yet about Crohns. Irritable bowel is common 1 in 10 and can have quite severe symptoms sometimes.
The blood test for Coeliacs is 95% to 96% accurate because sometimes people don't make t antibodies, so you also have to look for absolute t antibody levels, but most places do this as standard now, so the blood test for Coeliacs nowadays can be relied on (having just had a child diagnosed with Coeliac, and having every single symptom on the list myself, but a negative blood test I have been doing a lot of research on this subject LOL).
They can check stools for crohns but if it comes back positive would probably still do the colonoscopy to confirm diagnosis. If stool test is negative I think they would be unlikely to do endoscopy.
It's very difficult to say what will happen to your child though - no one here on the internet has examined her, seen her test results or spoken to her.
Good luck, I hope she gets some answers soon.

Thanks everyone, it's been helpful. Googled the fetal calprotectin test and understand that more now.

If lots of autoimmune in the family, it might be worth asking the GP if they can test her ANA. Also test for coeliac.

Just googled ANA test as I’ve not heard of it. GP said he tested her for lupus and she was negative for that so I assume that was an ana test? He also tested her for celiac and said she was negative for that.

Hi OP my dd had similar symptoms. She's had bloods done came back fine and calprotectin which as pps said shows inflammation and if there's any blood. Nothing showed from this so she is being treated for IBS and on Buscopan which is helping and randomly also seems to help period pain. We have noticed that the cramps and urgency seems to flare/worsen after eating diary and when stressed/tired which is hard as she's Year 11 and doing GCSEs. Hope you get sone answers and your dd feels better soon.