blood work result please explain my concern

[florida2001]

Hi,
my daughter had blood work done before iron infusion, did not get chance to discuss the results with the doctor yet, but how wuld you interpret these results? I see from it she is anemic, but I also see her CRP and sed rate is within normal range. I do not understand this. She has not started Humira yet due to insurance delay. She was diagnosed sometime in January with Crohn. She has no symptoms at all. before this blood work she was on penicilin due strep. not sure if this has something to do withe inflamation level in normal range. my concern here is that why if she feels good, her CRP, sed rate is in normal range she shuld start Humira? Could there be mistake in diagnosis? I am attaching the blood work result.

 

[Andersen007]

Remember most of us are not doctors here, so definetly try to find a chance to discuss it with him - and potentially ask for a second opinion too. Having said that: ERP and CRP being normal may or may not indicate anything about her inflammation status. I can tell you that I never ever had my CRP nor ERP elevated, not even at the middle of a flare. There are quite a few people like that, reasons are not well understood. Now the caveat is that whether your CRP tends to elevate during a Crohn's flare or not I think is relatively stable over time. What is very obviously missing from these charts is a stool calprotectin result - the most sensitive marker for gut inflammation. I would definetly recommend that. I can have normal CRP while my stool calpro could be 20x the normal range.


Antibiotics putting Crohn's into temporary remission is not unheard of, but not very typical with penicillin either - in fact antibiotics can also trigger a flare due to disruption of gut flora.

Whether there is a mistake in her diagnosis we can't responsibly judge, not just coz we aren't doctors, but also you haven't provided any information in terms of what constituted that diagnosis - I assume ileocolonoscopy with biopsy and MRE was done? What did they say?

 

[my little penguin]

Not a doc just a mom
One set of normal bloodwork is meaningless
Just as one set of high doesn’t mean much
They repeat bloodwork for a reason
Crohns waxes and wanes on its own.
We are struggle when our kids are dx and ask it can’t be Crohns
I think you stated you had more than one opinion and based on biopsy /imaging /colonoscopy results both sets of doctors agreed it was Crohn’s .

after 13 years I still question does my child really have Crohn’s .

but if you had a second opinion
And they both agree on the dx then meds are the best method to get to a healthy intestine inside

symptoms outside can be misleading
Kids feel fine but damage is still being done inside
They will have this disease for 80-90 years
That’s a long time to do damage
Pink healthy intestines is the goal

for my kiddo humira produced nice pink healthy intestines for the 5 years he was on it .

if you haven’t had a second opinion please get one

if she needed an iron infusion-that is telling enough for crohns and symptoms
Normal kids don’t need iron infusions

 

[florida2001]

Remember most of us are not doctors here, so definetly try to find a chance to discuss it with him - and potentially ask for a second opinion too. Having said that: ERP and CRP being normal may or may not indicate anything about her inflammation status. I can tell you that I never ever had my CRP nor ERP elevated, not even at the middle of a flare. There are quite a few people like that, reasons are not well understood. Now the caveat is that whether your CRP tends to elevate during a Crohn's flare or not I think is relatively stable over time. What is very obviously missing from these charts is a stool calprotectin result - the most sensitive marker for gut inflammation. I would definetly recommend that. I can have normal CRP while my stool calpro could be 20x the normal range.


Antibiotics putting Crohn's into temporary remission is not unheard of, but not very typical with penicillin either - in fact antibiotics can also trigger a flare due to disruption of gut flora.

Whether there is a mistake in her diagnosis we can't responsibly judge, not just coz we aren't doctors, but also you haven't provided any information in terms of what constituted that diagnosis - I assume ileocolonoscopy with biopsy and MRE was done? What did they say?

Yes I understand this is not medical forum, just wonder what you think. She had done colonoscopy, endoscopy and ultrasound (March) that confirmed Crohn " she has severe terminal ileal inflammation on intestinal ultrasound today with already evidence of chronic bowel damage including luminal narrowing of the ileocecal valve with a fistula/reactive fluid collection. She has significant activity in the terminal ileum and mild patchy hyperemia/activity in the entire colon." this is note from doctor. Biopsy confirmed chronic inflamation.

Im still more curious how come blood work and the way she feels, without symptoms, her stool is normal once a day does not match to ultrasound and colonoscopy. Wonder if when this diagnostics were done she could has something else then Crohn.
Calprotectin went almost to normal range also two months ago. went from 653 to 129 in March (normal range 0-129). haven't repeat now.

 

[florida2001]

Not a doc just a mom
One set of normal bloodwork is meaningless
Just as one set of high doesn’t mean much
They repeat bloodwork for a reason
Crohns waxes and wanes on its own.
We are struggle when our kids are dx and ask it can’t be Crohns
I think you stated you had more than one opinion and based on biopsy /imaging /colonoscopy results both sets of doctors agreed it was Crohn’s .

after 13 years I still question does my child really have Crohn’s .

but if you had a second opinion
And they both agree on the dx then meds are the best method to get to a healthy intestine inside

symptoms outside can be misleading
Kids feel fine but damage is still being done inside
They will have this disease for 80-90 years
That’s a long time to do damage
Pink healthy intestines is the goal

for my kiddo humira produced nice pink healthy intestines for the 5 years he was on it .

if you haven’t had a second opinion please get one

if she needed an iron infusion-that is telling enough for crohns and symptoms
Normal kids don’t need iron infusions

I know, and yes I had two opinions. I guess I just needed to reassure myself. Im always questioning why then they do blood work if this does not match inside. I guess it is natural to feel this way when it comes to diseases where is no way to reverse it. is sux
From my experience I know case where with different issue was error made by three doctors. So not perfectly trusty when it comes to doctors.

 

[Scipio]

I know, and yes I had two opinions. I guess I just needed to reassure myself. Im always questioning why then they do blood work if this does not match inside. I guess it is natural to feel this way when it comes to diseases where is no way to reverse it.

I can certainly understand your not wanting your daughter to have a serious, incurable disease. I sure wish I didn't have Crohn's, but those are the cards I've been dealt, so I'm going to play them as best I can.

One thing to think about is if she doesn't have Crohn's then what does she have? She clearly has something. And if the Crohn's diagnosis goes away you are left with no diagnosis and no path forward. No strong therapy will be provided. You'll be left with a daughter who clearly has an inflamed gut, and you and the doctors will have no clear idea of what to do about it.

The doctor's note...

" she has severe terminal ileal inflammation on intestinal ultrasound today with already evidence of chronic bowel damage including luminal narrowing of the ileocecal valve with a fistula/reactive fluid collection. She has significant activity in the terminal ileum and mild patchy hyperemia/activity in the entire colon."

...screams "Crohn's disease!" And the word "fistula" should be seen as the reddest of red flags - signaling that action needs to be taken and soon.

The blood tests can be useful adjuncts, but scopes, imaging, and pathology reports are far stronger evidence of the true state of her gut. CRP never worked for me. It was never elevated no matter how bad my gut was getting. It's not working for your daughter either. When it works it can be valuable. But it's a very imperfect test.

It would not be a wise choice to use results from a weak test to overrule conflicting results from a strong test. There is too much at stake.

 

[Andersen007]

Yes I understand this is not medical forum, just wonder what you think. She had done colonoscopy, endoscopy and ultrasound (March) that confirmed Crohn " she has severe terminal ileal inflammation on intestinal ultrasound today with already evidence of chronic bowel damage including luminal narrowing of the ileocecal valve with a fistula/reactive fluid collection. She has significant activity in the terminal ileum and mild patchy hyperemia/activity in the entire colon." this is note from doctor. Biopsy confirmed chronic inflamation.

Im still more curious how come blood work and the way she feels, without symptoms, her stool is normal once a day does not match to ultrasound and colonoscopy. Wonder if when this diagnostics were done she could has something else then Crohn.
Calprotectin went almost to normal range also two months ago. went from 653 to 129 in March (normal range 0-129). haven't repeat now.

Regarding those calpro numbers: I have what they called a “mild” disease - at diagnosis I had 2 small superficial ulcers in terminal ileum, nothing visible in colon, not much apart from a small and mild thickening of TI on MRE, and 600+ calpro. So always understand these results in her context and dont compare it with others, and be aware of the limitations of such tests, just like Scipio said above.

 

[florida2001]

I know and thanks , it is still hard for us to deal with that. Thankfully she has no symptoms and doing fine. I understand in this point is important to start treatment to keep it where it is now.