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Hello!

Hello everyone! I have a few updates on my kiddo and maybe some of you can shed some light on our latest scopes. I apologize as this might be long. So about a month ago, my kiddo started to take a SUPER long time to eat at any meal. Like my husband and I would have to stand over him and coax him to eat, but it would still take him 1-2 hours to complete any meal, even the smallest of food. He also started having to go poop every meal. At first, I thought it was just him trying to get out of eating and being picky, however, he actually did poop with every meal. It started with just dinner, but it then progressed to basically 3 times a day at mealtimes. Sometimes the stool wasn't formed, sometimes it was diarrhea, and sometimes it was formed. Occasionally, there was mucus. He also started gagging during meals, and sometimes throwing up with the gagging. It was at that point, I asked the DR for some guidance. This was at the beginning of October. He ordered a calpro and that came back at 138. I know that is not considered high for IBD, however, my kiddo has never had an elevated Calpro. His previous numbers were <16 and 38. The doctor decided to up his Colazal from 1 pill 3x a day to 2 pills 3x a day to see if it would help him. The symptoms continued so his doctor said hold the meds to see if the increased dose was making him sick. Symptoms still continued on and off so we had scopes last Thursday. Visually, everything looked normal, as it always does with my kiddo. (This was his 3rd set of scopes--last one was almost 4 years ago.) His biopsies 4 years ago showed inflammation throughout, with mild active inflammation in the esophagus and TI, mild inactive inflammation in the duodenum and stomach, and moderate active inflammation in the right and left colon. Fast forward to these scopes...his Colon and TI look great! No inflammation in the esophagus either. However, his stomach and duodenum have chronic active inflammation. At diagnosis 4 years ago, we did a celiac test and it was negative. The pathology notes say that the duodenal inflammation is consistent with, but not definitive of Crohn's and the stomach inflammation is suggestive of Crohn's. The doctor is repeating the celiac test, and if that is negative, said we will need to change meds as his current meds do not help that area. I am attaching the pathology notes. Does anyone know how this area is usually treated? I have found a few articles that say PPI and steroid/immunosuppressants, but I'm just looking to see what others have done to treat. Thanks!

A.. SMALL BOWEL, LABELED AS TERMINAL ILEUM, BIOPSY: • BENIGN SMALL BOWEL MUCOSA WITH NO HISTOPATHOLOGIC ABNORMALITY.
B, C. COLON, LABELED AS RIGHT AND LEFT, BIOPSIES: • BENIGN COLONIC MUCOSA WITH NO HISTOPATHOLOGIC ABNORMALITY.
D. SQUAMOUS MUCOSA, LABELED AS ESOPHAGUS, BIOPSY: • BENIGN SQUAMOUS MUCOSA WITH NO HISTOPATHOLOGIC ABNORMALITY.
E. STOMACH, LABELED AS ANTRUM, BIOPSY: • FOCAL CHRONIC ACTIVE GASTRITIS. • WARTHIN STARRY STAIN NEGATIVE FOR HELICOBACTER PYLORI.
F. SMALL BOWEL, LABELED AS DUODENUM, BIOPSY: • CHRONIC ACTIVE DUODENITIS.
COMMENT: The duodenal biopsy shows an increase in lamina propria and intraepithelial lymphocytes, as well as many neutrophils within the lamina propria, and some within the crypt epithelium. This is consistent with, but not specific for, duodenal involvement by Crohn's disease. The pattern of inflammation within the stomach is also suggestive of Crohn's disease. Other considerations include celiac disease, Helicobacter pylori infection, and drug reaction. Clinical correlation is recommended.
 
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my little penguin

Moderator
Staff member
Noncaseating granulomas must be present for most pathologist to check the “crohns “ box as definitive even then they hesitate
Granulomas are present in only 30% of crohns cases by the way
Are they doing a pill cam of the small intestine ?
Since having crohns of just the stomach /duodenum but not the lower intestine/large intestine is rare

also get a second opinion read at another large pediatric ibd center in his records and pathology slides

did he have an MRE done as well ?
 
He was diagnosed 4 years ago with Crohn's and has been on mesalamine since then. His doctor said the colon looks good and I think we can chalk that up to the meds doing their job since his case was mild/moderate. He did not mention a pill cam and i'm annoyed that I didn't mention it because it should have been placed with these scopes, but they were brought up last minute and we had literally 3 days to prepare (hotel/prep,etc). His MRE done 4 years ago was clear with nothing found. His doctor is talking about a med change pending the outcome of the celiac retest. He is verifying it is still negative, and if so, he will be changing his Crohn's meds but didn't mention what the change will be.
 

my little penguin

Moderator
Staff member
5-asa are the mildest therapy . It is not recommended anymore as a monotherapy for crohns (even mild crohns ) . It only treats the top layer of the intestine like a cream and does not treat the full thickness of the intestine .
Crohns affects the full thickness .

the next level of drugs are immunosuppressants
Theses are used for mild to moderate crohns as monotherapy
There are two options
6-mp/imuran - however most ped go no longer use this med due to the higher risk of lymphoma. And fatal T cell lymphoma especially in young boys
The second option is methotrexate
Which is given in tiny doses for crohns
Methotrexate has a long safety record ( it’s been used for decades in little tiny kids with juvenile arthritis)
Methotrexate can have side effects -nausea ,flu like fatigue etc...
Some kids tolerate one form over another woth mtx

my kiddo was on 6-mp almost 10 years ago before the lymphoma risk was known
It raised his liver enzymes over abd over so it was dropped after 8 months

he is currently on mtx pills with Stelara
But the mtx is for his juvenile arthritis.
The combo has worked well for him for years


He tried mtx injections as monotherapy at age 8 .
The injections made him sick with flu symptoms for 6 out of 7 days . It also didn’t control his crohns enough so he developed an EIM (vasculitus) at age 8
He was later switched to remicade at age 8 due to vasculitus.

Good luck
 

Lady Organic

Moderator
Staff member
''His biopsies 4 years ago showed inflammation throughout, with mild active inflammation in the esophagus and TI, mild inactive inflammation in the duodenum and stomach, and moderate active inflammation in the right and left colon.''

The medication your child has been put on, mesalamine and colazal, have action in the intestines only.
I really second the second medical opinion with a pediatric IBD specialist.
 
The current GI we see is the Chief Gastroenterologist at an Improve Care Now center and did his pediatric residency as well as pediatric gastroenterology residency at CHOP and specializes in EOE and IBD. We have been talking about a second opinion for a bit, just to confirm with a fresh set of eyes what our current GI is recommending.
 

my little penguin

Moderator
Staff member
Second opinion doesn’t mean you don’t like your current Gi .
We have had more than a few second opinions for ds in Gi abd Rheumo in the past 10 years
It’s just a fresh look
Sometimes it changes things sometimes it confirms what is good
 

crohnsinct

Well-known member
A second opinion couldn't hurt but what your GI is telling you is pretty consistent with standard procedures. It is great that you are with an Improve care Now center. We happen to be at one also.

Your son's symptoms are consistent with small bowel disease. The 5 ASA's and colazal do not work well for small bowel disease. It is great that it helped his colon and TI but if he has small bowel disease you really need something that treats both areas. I am surprised about the rerunning of the celiac test as scopes are usually the gold standard for that. What test is the physician rerunning? Blood labs or are they requesting pathology look at the biopsies again but this time for celiac?

IDK how much I would push for a pill cam and would be happy they didn't place one during scopes. If he has a stricture you don't want the camera getting stuck. If you want to pursue a pill cam, as for the dummy pill first just to make sure it will pass. You could also ask for another MRE but the doc might not ask for it given they saw inflammation and the MRE results might not change the treatment course. However, if you change meds and he still has these symptoms you are going to want an MRE to evaluate if there is a stricture which could be with inflammatory (not responding to the meds you choose) or fibrotic (scar tissue- in which case meds will not help).
 
Thanks for the reply! So, he is rerunning the Celiac Serology exam, except he is running it through Prometheus this time as opposed through a test through regular blood work. Not sure if there is a difference there. My son was tested at 2 for Celiac and I read that if they are under 3, sometimes the test isn't as accurate so that could be why is checking again. I am guessing that because the inflammation found was suggestive but not definitive of Crohn's, he wants to because my guess is, he will be recommending something like Methotrexate or Humira/Remicade at this point. From my reading, the Duodenitis with the Focal Gastritis points towards Crohn's in peds patients, but since the pathologist said that the differential diagnoses could be Celiac, he is reconfirming the negative.
 
@crohnsinct I also don't think they were definitively able to rule out Celiac based on this statement from the pathology report: The villous architecture appears intact, although it is difficult to evaluate in some areas due to orientation of the tissue. Also it says that the intraepithelial lymphocytes are increased and when I googled that, that is a common finding in Celiac, but can also be found in Crohn's. I guess they couldn't make a definitive decision based on what was seen, so he decided to re-rule out Celiac again.
 

my little penguin

Moderator
Staff member
Blood tests are not the gold standard for celiac .
Dh (non ibd ) has some blood markers common in celiac but by biopsy does not have celiac
That said he doesn’t tolerate gluten

Biopsy is the gold standard
So if they are still questioning celiac after biopsy
Then have the pathology slides (all of them not just this round ) re read at another hospital
Ds (ibd) does not have celiac but did have damage to the villa when he was first dx on biopsy.
 
Just to update...Nurse says Celiac was negative, as I figured it would be. The results are on the doctor's desk for review, so I should hear from him tomorrow. No idea what he will recommend for treatment.
 
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