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Can inflammation be normal with crohns?

So I have a family history of crohns. Not a massive one or a close one but two people in my family have it. This year I've also been very very ill, having to miss 5 weeks in total off work and make 4 separate hospital visits. I have tummy pains most days, which I can only describe as similar to period cramps, however sometimes it's like someone's in their with a scouring pad. It wakes me up in the night it's that bad. My temperature won't regulate itself, I either become freezing or boiling, boiling hot especially some nights. I can sweat a lot too. I will have diarrhoea about 5 times a day, however if Im in that much pain I need codeine it seems to lessen it. Not that the codeine helps the pain much. There's also been 4 separate occasions that there has been bleeding, 3 of them warranting a hospital visit. I also get some mouth ulcers, I constantly have one somewhere in my mouth, and my elbows knees wrists ankles hands and toes are prone to becoming quite painful. I've also lost two stone in weight this year, and I'm now completely unable to eat gluten or dairy products, along with anything sugary or fatty. However when my blood tests were taken they came back normal except for dehydration(which is now a daily battle I seem to keep losing). I've been refered to a specialist, however everyone seems to think it is Crohn's disease. But nothing in my blood tests indicate this? I am so confused !
 

nogutsnoglory

Moderator
Blood tests are not reliable for crohns diagnosis. Inflammation levels can be helpful if already diagnosed to surveille the disease. They don't always come up as prob even when inflamed.

The key to diagnosis is colonoscopy or imaging such as MRI.
 

Lady Organic

Moderator
Staff member
My blood reports are always normal unless I am at a severe state of disease activity. Multiple different tests exists to check the different organs. cronh's can be anywhere from mouth to anus. All the symptoms you describe are compatible with a CD diagnosis, but only a GI can evaluate you and give you answers. Hopefully your appointment with GI consultant is coming fast so you get answers and treatments for your symptoms. when is your appointment?
 
My child had normal labs, stool, scans but the scopes revealed a totally different story.
I hope you get help soon.
 
Exactly, Blood tests are not reliable...
Last year, I had inflammation, shown on the CT scan while the blood test showed nothing.
 
Yes...ish. When she was in an active flare it was around 60 but in remission she's at 20 or under.
As you see not high numbers at all but a subtle difference.

Now her new GI doesn't use the test. She says it's not reliable but she has used it when I've asked for it. Mama's have a way of persuading.
 

Lady Organic

Moderator
Staff member
Oh ok, 60 is in the ''grey zone'' or unclear , but not confident normal. Well thats what i see in our chart here. I wonder if has happened to people to be in the normal zone under 50 and be in a active flare?
 
My dr did ibd blood tests ..
Test name 1 was: eXaIBD through eXagen diagnostics.. In people without IBD their results come back as 0.0.. When its over its consistent with IBD, ( crohns disease, or ulcerative colitis).
Test 2: eXaUC/CD expression index. That tells which one CD or UC you're consistent with.

It helped my Dr initially diagnose me. Then I got my official diagnosis the day I had a fistula surgery.

I hope this helps. Wishing you well. :)

Hugs
 
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