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Crohn's Disease Forum » Parents of Kids with IBD » Need help understanding MRE report- update on my son


08-24-2017, 08:13 PM   #1
mirandapresley
 
Join Date: Jul 2017
Need help understanding MRE report- update on my son

So I have been able to view my sons MRE report from yesterday- but I don't understand all of it. I have not heard from the doctor yet of course...

Everything appears normal except for two things which were noted- I will quote directly from the report:

"in the left upper quadrant there is a segment of collapsed bowel with diffusion restriction- likely jejunem. Increased signal in the post contrast images in the area is favored to be secondary to decompressed loops. This could be related to the patients' celiac disease."

"There is a small amount of free fluid in the pelvis, unexpected in a male. May be related to known celiac disease."

It goes on to state that there is no thickening and everything else looks normal sized.

His endoscopy done earlier this month showed no sign of active celiac disease, though his Ttg has been slightly elevated. Crohns can also elevate the Ttg.

From what I am googling- the fluid is something to be concerned about. Am I correct in thinking that attributing it to celiac, when celiac has already been determined to be under control, is not likely correct?

As for the diffusion signal...no clue what that means, even after googling.

Can anybody help decipher this please?
08-24-2017, 08:23 PM   #2
Maya142
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Hmmm I don't know...we have had free fluid more than once but I have a daughter, so no one was concerned.

I honestly think you're going to need a doctor to decipher it. If he has controlled celiac disease, shouldn't everything be normal??

Has a pill cam been scheduled too? That can be more helpful in earlier stages of the disease because you can actually "see" ulcerations in the small bowel. MREs are great for showing things like thickening and strictures and abscesses.
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08-24-2017, 08:38 PM   #3
mirandapresley
 
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Hmmm I don't know...we have had free fluid more than once but I have a daughter, so no one was concerned.

I honestly think you're going to need a doctor to decipher it. If he has controlled celiac disease, shouldn't everything be normal??

Has a pill cam been scheduled too? That can be more helpful in earlier stages of the disease because you can actually "see" ulcerations in the small bowel. MREs are great for showing things like thickening and strictures and abscesses.
Kind of what I was thinking- if celiac is under control, then why attribute it to that? He has had celiac for six years, we've never had issues until last year when the abdominal pain started up again. Initially we thought he must have been exposed to gluten, and so we tried to wait it put, but he has only gotten worse. There is zero chance he has been exposed in the last 8 months as we pretty much removed processed gf food from his diet to avoid even tiny bits of gluten.

Yes, the GI had said he would do a pill cam if the MR didn't tell us anything, but it hasn't been scheduled yet. I'm so annoyed that I always have to be the one to reach out to them with this stuff! And my gut tells me that because he doesn't know I've read the report, he is going to say everything looked fine! I'm really thinking hard about getting a new GI, but it takes months to get in anywhere around here, and my poor kid has been suffering for so long already! I just want to know what is wrong so we can treat it!

I'm so frustrated.
08-24-2017, 08:46 PM   #4
Maya142
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I would just ask him straight out to explain what the report said. And ask if he's been fine all these years while being gluten free and there is no gluten exposure you know of, then why is this being attributed to celiac?

I would also really consider a second opinion, because it seems like your GI has pretty much decided there is nothing wrong.
08-25-2017, 03:14 PM   #5
Jabee
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My GI has talked about the possibility of developing refractory (unresponsive to the elimination of gluten) celiac disease. Have you asked his GI about whether this is a possibility? Of course flattened villi and antibodies would still show up, so I'm not sure why the doctors are focused only on celiac disease.

Of greater concern for me is the collapsed bowel, which generally means a bowel obstruction. When will you be talking to his GI?
08-25-2017, 05:05 PM   #6
mirandapresley
 
Join Date: Jul 2017
My GI has talked about the possibility of developing refractory (unresponsive to the elimination of gluten) celiac disease. Have you asked his GI about whether this is a possibility? Of course flattened villi and antibodies would still show up, so I'm not sure why the doctors are focused only on celiac disease.

Of greater concern for me is the collapsed bowel, which generally means a bowel obstruction. When will you be talking to his GI?
I am wondering about refractory sprue also...except that he said his biopsies and endoscopy looked "perfect." So either he doesn't know what he is looking for and missed it, or this is something else.

I haven't spoken to him, but read his comments on the MRI report, where he declares, "So, basically we have already biopsied the areas of concern and they looked fine, so this is essentially a normal MR."

Not kidding.

I talked to his nurse and he is going to get the dummy pill to swallow next week before they will schedule the pill cam. Meanwhile I made an appt with a different GI Mid-September because I think this one is so convinced it is all in his head that he is going to dismiss anything that does turn up just to be right. I don't think he actually cares about making my son feel better. So infuriating.
08-25-2017, 06:03 PM   #7
my little penguin
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If the new GI is in the same hospital
The odds are slim you will a different opinion from a colleague
In order to get a respected second opinion most go to a different hospital and then
See a new GI within your own hospital
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08-26-2017, 01:12 PM   #8
mirandapresley
 
Join Date: Jul 2017
If the new GI is in the same hospital
The odds are slim you will a different opinion from a colleague
In order to get a respected second opinion most go to a different hospital and then
See a new GI within your own hospital
No it is a different hospital, Children's in Richmond VA. They have a specialty clinic for digestive disorders that encompasses everything from diagnosing IBD, Celiac, etc, to feeding and nutrition and growth, so I am hopeful they can be more supportive and direct us as to how to move forward. We have been going to University of Virginia...which in theory should be top notch, but I am less than impressed thus far.
08-26-2017, 05:00 PM   #9
Jabee
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It's really frustrating when doctors get fixated on one thing and either can't or won't consider anything else. I'm glad the new GI is at a different hospital.
08-27-2017, 05:52 PM   #10
pdx
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No it is a different hospital, Children's in Richmond VA. They have a specialty clinic for digestive disorders that encompasses everything from diagnosing IBD, Celiac, etc, to feeding and nutrition and growth, so I am hopeful they can be more supportive and direct us as to how to move forward. We have been going to University of Virginia...which in theory should be top notch, but I am less than impressed thus far.
I really hope that this new GI helps you figure out what's going on. Hang in there!
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Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (currently on 9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (15 mg weekly)
vitamin D, folic acid, multivitamin, Prozac

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Topical clobetasol for Remicade-induced psoriasis
09-04-2017, 06:04 PM   #11
DustyKat
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I have no experience with the coeliac side of things but would just like to touch on the free fluid.

Prior to diagnosis both of my children had free fluid. My daughter had free fluid in the pelvis which was dismissed due to being female. In her case it turned out to be pus from a perforated bowel. My son had free fluid higher up in the abdominal cavity and it too was noted as being rare due to him being a male. In his case he too ended up having a perforation. Bear in mind this in the context of both of them having what turned out to be fistulising ileal Crohn's.

Just given our experience I would press the specialist for answers as to why a male would have free fluid in the pelvis when reproductive organs can't be used as a cause.
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