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Not Sure

Hello, my 13 year old daughter was having diarrhea with blood. But no pain anywhere. She had a colonoscopy and endoscopy done, blood work and stool sample. Stool sample only showed blood. Blood work was relatively normal and the main markers for Crohn’s, the CRP & ESR were normal.

The colonoscopy showed inflammation of the large and small intestine. They also took biopsies...

The Dr. called a few days ago and said the Crohn’s “markers” in the biopsy were negative and they are not sure yet what she has. He said it still could be Crohn’s.

We are confused with his outcome since it basically was inconclusive only showing inflammation. Recently she has not had any diarrhea or bloody stool.

We are going to follow up with a GI Dr. but in the mean time we are wondering what she could have.

What are your thoughts on this?
 
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it is not uncommon to have normal CRP and ESR but still have IBD inflammation. One of my daughters always returns perfectly normal blood labs but could still be in a bad flare.

When they did the stool studies, did they test for fecal calprotectin? This is very specific to gut inflammation. It isn't conclusive to IBD but certain very high values will make doc lean more toward an IBD diagnosis.

I am not really sure what "markers" in the biopsy he is referring to. It could be granulomas. If granulomas are found then they check the Crohn's box but a lot of people with Crohn's don't have granulomas on biopsy because it just depends on the exact spot where they got the biopsy from. Also, even if they don't find granulomas, that doesn't mean that a patient can't have Ulcerative Colitis.

How long was she having the diarrhea with blood? How much blood? How is her weight and growth? Have either stalled or has she lost weight? Those are also indicators of IBD and other gastro illnesses.

When was the stool sample taken? Was it when her diarrhea and bleeding were still active or was it after it all cleared? If after it cleared and there was still blood found in the sample, it is coming from somewhere and further investigation is warranted.

You can have inflammation in the intestines just from a gastro bug. Without knowing more specifics about the type of inflammation they found it is hard to say. Did they do an upper endoscopy?

The colonoscopy only gets to a small part of the small intestine. To get a complete picture of what is going on, you need to look at the whole of the small bowel. For that you would do a MRE or a pill cam.

Of all the gastro illnesses, bloody diarrhea points the most toward IBD. However, while IBD can wax and wane, it is not usual that prior to diagnosis diarrhea and blood clear on their own. Pretty much by the point you are having bloody diarrhea it is going to just get progressively worse until it is treated.

Sorry, I am not giving you very clear cut advice here. The IBD world is different for everyone and there is no real clear cut definition.

It is great that you are going to see a GI. I think you will get a lot more answers indirection at that appointment.

I am sure other parents will chime in here with things I am missing. It is way past my bedtime and I am not thinking very clearly.
 
it is not uncommon to have normal CRP and ESR but still have IBD inflammation. One of my daughters always returns perfectly normal blood labs but could still be in a bad flare.

When they did the stool studies, did they test for fecal calprotectin? This is very specific to gut inflammation. It isn't conclusive to IBD but certain very high values will make doc lean more toward an IBD diagnosis.

I am not really sure what "markers" in the biopsy he is referring to. It could be granulomas. If granulomas are found then they check the Crohn's box but a lot of people with Crohn's don't have granulomas on biopsy because it just depends on the exact spot where they got the biopsy from. Also, even if they don't find granulomas, that doesn't mean that a patient can't have Ulcerative Colitis.

How long was she having the diarrhea with blood? How much blood? How is her weight and growth? Have either stalled or has she lost weight? Those are also indicators of IBD and other gastro illnesses.

When was the stool sample taken? Was it when her diarrhea and bleeding were still active or was it after it all cleared? If after it cleared and there was still blood found in the sample, it is coming from somewhere and further investigation is warranted.

You can have inflammation in the intestines just from a gastro bug. Without knowing more specifics about the type of inflammation they found it is hard to say. Did they do an upper endoscopy?

The colonoscopy only gets to a small part of the small intestine. To get a complete picture of what is going on, you need to look at the whole of the small bowel. For that you would do a MRE or a pill cam.

Of all the gastro illnesses, bloody diarrhea points the most toward IBD. However, while IBD can wax and wane, it is not usual that prior to diagnosis diarrhea and blood clear on their own. Pretty much by the point you are having bloody diarrhea it is going to just get progressively worse until it is treated.

Sorry, I am not giving you very clear cut advice here. The IBD world is different for everyone and there is no real clear cut definition.

It is great that you are going to see a GI. I think you will get a lot more answers indirection at that appointment.

I am sure other parents will chime in here with things I am missing. It is way past my bedtime and I am not thinking very clearly.
Thanks so much for the info and taking the time to respond. To follow up on a few questions...

She was having the Diarrhea with blood for about 6 months, it wasnt watery just a soft stool. Recently her stool has been normal consistancy but still some blood. The stool test was done while she had the bloody soft stool and done before the colonoscopy and upper endoscopy were done. They called us with the stool test results and all they said was they were negative other then the obvious signs of blood. So I am not sure if they did the fecal calprotectin test. I assume they did but cant say for sure.

The "markers" I assume when they did the biopsies, they took numerous ones from the inflamed areas and those came back negative.

She has not lost weight and growth seems normal. The general explanation was she has inflammation in the large and small intestine. There was no ulcers or any polups. Nothing was found in the GI track or stomach. Again she has no pain whatsoever, only poops once a day, maybe twice which seems normal.
 

my little penguin

Moderator
Staff member
Get a copy of the pathology report from the upper and lower endoscopy.
Send her records to a large university pediatric hospital for ibd for a second opinion
This would include pathology report
Pathology slides
As well as docs notes /clinic visits and bloodwork

Doesn’t sound like the doc is telling you much
They would have very specific findings on the biopsy report and told you A ) what those were and B) if they were chronic or acute
Granulomas need to be found for some not all pathologist to check the crohns box
But other signs can be there as well

Did they do a pill cam or MRE ?
Please get a second opinion
 

my little penguin

Moderator
Staff member
Ohhh and there has to be a reason for the “general inflammation “ found in the intestine
Not “it just happens to be there “
Something is causing it abd just if the time that is crohns or UC
But can be other reasons
Get a second opinion.
 
Get a copy of the pathology report from the upper and lower endoscopy.
Send her records to a large university pediatric hospital for ibd for a second opinion
This would include pathology report
Pathology slides
As well as docs notes /clinic visits and bloodwork

Doesn’t sound like the doc is telling you much
They would have very specific findings on the biopsy report and told you A ) what those were and B) if they were chronic or acute
Granulomas need to be found for some not all pathologist to check the crohns box
But other signs can be there as well

Did they do a pill cam or MRE ?
Please get a second opinion
I will be sure to do that, we have a follow up app with a Gi in a few weeks so will see what he says. We will schedule a MRE and also maybe a pill cam after the MRE. He did mention chronic but I am not sure if thats because we told him the symptoms have been ongoing for 6 months or they somehow were able to tell its chronic by the tests.

Is it possible it can be a food allergy such a celiac and/or a gluten allergy. ? Would that cause the symptoms she is having. I know both me and my wife have been sensitive to gluten. I can still eat it but get occasional stomach aches. The wife cant eat it at all.
 

my little penguin

Moderator
Staff member
Celiac would be seen in an upper endoscopy (duodenum area ) more
And they would have said
True Ige mediated food allergy causes anaphylaxis
Celiac would cause blunting of the villa
Egids (eosinophilic gastrointestinal disease ) causes high eosinophils often a pre cursor to crohns

Ds was dx at 7 and now is almost 16
So it takes a while but you do
Learn the lingo
 

my little penguin

Moderator
Staff member
The biopsy slides can show things under the microscope that determine if there are changes in the cellular structure and if theses changes are acute or chronic
 
Ok well the goings on sounds less like colonic disease. Colonic disease tends more toward liquid diarrhea and much more frequency and urgency. Just because she doesn't have pain doesn't mean she doesn't have colonic disease either. My older daughter has severe colonic disease and it has to be really bad before she experiences pain.

ALSO to have Crohns you do NOT have to have diarrhea. Plenty of kids with small bowel diesease actually get constipation or go once a day even. Granted the presenting symptom with those kids is usually pain but honestly there is no rhyme or reason with this disease.

How much blood was she seeing? Was it streaks along the stool? A little on the toilet tissue? That kind "could" be fissures or hemorrhoids. If it was streaming out and you are seeing pooling in the toilet then more likely not a hemmie or fissure.

Was she by chance taking NSAIDS for anything chronic? high NSAID use "could" cause "some" inflammation in the digestive tract.

All this to say could be IBD or could be something else. Really glad you are seeing a GI. The GI will have much more info for you.
 
Ok well the goings on sounds less like colonic disease. Colonic disease tends more toward liquid diarrhea and much more frequency and urgency. Just because she doesn't have pain doesn't mean she doesn't have colonic disease either. My older daughter has severe colonic disease and it has to be really bad before she experiences pain.

ALSO to have Crohns you do NOT have to have diarrhea. Plenty of kids with small bowel diesease actually get constipation or go once a day even. Granted the presenting symptom with those kids is usually pain but honestly there is no rhyme or reason with this disease.

How much blood was she seeing? Was it streaks along the stool? A little on the toilet tissue? That kind "could" be fissures or hemorrhoids. If it was streaming out and you are seeing pooling in the toilet then more likely not a hemmie or fissure.

Was she by chance taking NSAIDS for anything chronic? high NSAID use "could" cause "some" inflammation in the digestive tract.

All this to say could be IBD or could be something else. Really glad you are seeing a GI. The GI will have much more info for you.
Got her Calprotectin result from the Dr. and it is 207 which he says is high and basically shows there is inflammation present.

The blood wasI would say not a whole lot but not minimal. When whipped it was on the paper and some was present around stool.
She has not taken any NSAIDS. After about 7 months now, she has had sporadic soft stool with some blood but no pain anywhere and no other symptoms.
 
207 is elevated. Not horribly but elevated and warrants further investigation. Small bowel disease returns lower levels and generally has a lower cut off than colonic disease so I would definitely have them look at her small bowel with either the MRE or pill cam.

IBD isn't the only thing that causes an increase in cal pro although it is the most likely.

That kind of blood "could" be fissure or hemmie. Otherwise they would have seen more evidence of where the bleeding was coming from during the scope i.e.: bleeding ulcers etc.

The good news is your doc is paying attention. A lot of docs might ignore this and stop investigating. It's also good she is feeling well. Hopefully you can figure this out quickly and get her the appropriate treatment before much damage is done.

Keep us posted.
 
207 is elevated. Not horribly but elevated and warrants further investigation. Small bowel disease returns lower levels and generally has a lower cut off than colonic disease so I would definitely have them look at her small bowel with either the MRE or pill cam.

IBD isn't the only thing that causes an increase in cal pro although it is the most likely.

That kind of blood "could" be fissure or hemmie. Otherwise they would have seen more evidence of where the bleeding was coming from during the scope i.e.: bleeding ulcers etc.

The good news is your doc is paying attention. A lot of docs might ignore this and stop investigating. It's also good she is feeling well. Hopefully you can figure this out quickly and get her the appropriate treatment before much damage is done.

Keep us posted.
Thanks again so much for the info, it much appreciated in the scary time. :)
 
I managed to get the biopsy results from my Dr. I have attached them here for anyone that has any experience in what they found. Much appreciated as always.
 

Attachments

my little penguin

Moderator
Staff member
Please get a second opinion
Based on biopsy results alone
Top three in the US for ped ibd
#1 chop (children’s of Philadelphia)
2 Boston children’s
3 cinncinati children’s

Call they have staff just for second opinions
To help you through the process
We did it not once but twice
We did not change my kiddos primary Gi until we moved
But the Gi did appreciate the second set of eyes to confirm crohns both times
(Yes Ds was complicated )
 
Mind you we are just moms and not medical experts but the rectal biopsy to me seems to be where the bleeding is coming from and crypt abscesses and crypt distortion are seen in IBD. Now, whether or not they are seen in other diseases, syndromes, infections etc I can't say because I can only look at this from a Crohn's lens.

Good luck at your appointment. Concentrate on the good in that her symptoms seemed to have resolved, your are on your way to a dx and it is early.

Are you in the U.S.?
 
Mind you we are just moms and not medical experts but the rectal biopsy to me seems to be where the bleeding is coming from and crypt abscesses and crypt distortion are seen in IBD. Now, whether or not they are seen in other diseases, syndromes, infections etc I can't say because I can only look at this from a Crohn's lens.

Good luck at your appointment. Concentrate on the good in that her symptoms seemed to have resolved, your are on your way to a dx and it is early.

Are you in the U.S.?
Yes I am in the U.S. We have been going to the Childrens Hospital of Pittsburgh. We have an app this Thursday morning.
 
Ohhh, I think they are a good one and ranked highly recently.

So was she seen by a GI prior to the scopes? Usually in the US you have to be seen by a GI before you move to scopes but not always. Did the GI you are seeing actually do the scopes? They don'y have to, it is just super helpful if they do but at larger teaching hospitals that is sometimes difficult arrange.

You will have answers soon enough. Hang in there!
 
Ohhh, I think they are a good one and ranked highly recently.

So was she seen by a GI prior to the scopes? Usually in the US you have to be seen by a GI before you move to scopes but not always. Did the GI you are seeing actually do the scopes? They don'y have to, it is just super helpful if they do but at larger teaching hospitals that is sometimes difficult arrange.

You will have answers soon enough. Hang in there!
Yes she was seen by a GI prior to the scopes. The same guy that did the scopes is who we are seeing this Thursday.
 
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