Crohn's Disease Forum » Support Forum » Undiagnosed Club » Room for one more in here?

02-15-2012, 12:36 PM   #1
Join Date: Jan 2012
Location: Chambersburg, Pennsylvania
Room for one more in here?

Well, move on over folks.. Rosalyn is an official member of the undiagnosed club for a little while. We thought we'd go in today and discuss treatment options. Turns out, the GI doesn't feel comfortable totally diagnosing her as Crohns yet. There's lots of little circumstantial things, but no smoking gun, so to speak.

-CBIR1 was the only marker that was extremely high (>100) on Prometheus panel. He doesn't feel comfortable diagnosing Crohns with only CBIR1 alone, in the absence of any other markers being elevated.
-Family history of Crohns.
-Last colonoscopy was visually normal, but biopsies came back with cryptitis and lymphocytic aggregates when examined microscopically.
-Height/weight has fallen from 14th% to 5th% in past 16 months.
-Obvious repeated episodes of straining/nausea/diarrhea/vomiting, constant LLQ pain which is tender on examination.
-She definitely has a bad reaction to fiber such as popcorn & we believe peanut butter was the trigger this weekend - which is a Crohns clue.

But even though we walked out without a definitive diagnosis (which he had tentatively given us at the last appt), all is not lost!!

He's scheduled her for another colonoscopy on 13 Mar. He believes he can take a better, closer look, esp in that LLQ area and maybe see something the last GI didn't. And, if that doesn't show something, he's already talking about doing a PillCam. I'm grateful he's not going to push us out the door.

He prescribed Bentyl for now, to help with the spasms. Yay for that. Maybe she'll miss less school - she missed 13 days last semester. The school can't enact a 504 plan without that damm diagnosis, but talking with the principal today, they will give her a volunteer tutor during recess to make up the missed days & work. That is awesome. And my dear little Rosalyn is enough of a nerd like her Mommy that she's excited to miss recess so she can make up her work

On a side note, the GI was a kind & friendly & personable again, as he was at the first appointment. I think he must simply have terrible phone presentation. I will have to remember that when I catch him on the phone again. He also recommended she see a specific Ped Rheumy at Hershey, who explores rheum in conjunction with intestinal diseases. He suggested that this doc is rather cavalier in prescribing mesalamines for off-label use and even if he as the GI may not be comfortable prescribing something, this Rheum might be willing to. I think this was a hint for "down the road" if we couldn't get a definitive answer. Interesting....
02-15-2012, 04:17 PM   #2
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Join Date: May 2010
Location: Madison, Wisconsin

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Apologies in advance as I have a migraine (I didn't want your post to go without any answers though, plus I'm trying to distract myself from thinking about the migraine so I shall do my best to reply under the circumstances). Sorry if there are typos or if I misunderstand anything you wrote, as this migraine is affecting my vision and concentration.

I'm sorry to hear that your daughter is undiagnosed. I'm an undiagnosed adult and I can't imagine going through this as a child. My heart goes out to you and to her! There was one thing that jumped out at me from your post. You mentioned the c-scope was visually normal but there were increased lymphocites? Have they thought about possible lymphocytic colitis (a type of microscopic colitis)? Microscopic colitis is a form of IBD and my GI thinks it's possible I have that myself (he thinks either Crohn's or microscopic colitis). I know that microscopic colitis appears visually normal (as the inflammation is on a microscopic level), the symptoms can be very similar to Crohn's-like symptoms (nausea, abdo pain, diarrhea, weight loss, etc). It has a skip pattern like Crohn's does, so areas of diseased tissue will manifest in between healthy tissue. It's colitis so it will only appear in the colon of course, but they still need to biopsy the right area to find it, and since it's microscopic and can't be seen by the naked eye AND has the skip pattern, it is a total guessing game to get a biopsy in the right area. So, long story short, when she has her next c-scope next month, implore the doctor to take lots of biopsies.

I hope that helped. Welcome to the club and I hope you and Rosalyn don't have to stay in the club for too long and can "graduate" to the land of the diagnosed.
02-15-2012, 05:00 PM   #3
Join Date: Jan 2012
Location: Chambersburg, Pennsylvania
I had stumbled across the lymphocytic colitis before, when I was researching what the lymphocytic aggregate meant after reading it on her biopsy report... she doesn't have chronic diarrhea though.

Most days & weeks, her BMs are "normal", though with more straining/constipation-type symptoms since this all began. She only gets diarrhea for a 12hr-2day period when the pains get really bad, and that is maybe once every 2wks or so.

I am definitely going to ask him to biopsy as much as he can stand to, though. He's very interested in that LLQ area that won't quit for pain. He's also already talking about a pillcam as the next step, if we don't see anything. It made me feel relieved that he believes something is truly going on, we just have to get our eyes on what it is.

THank you for bringing my mind back to the CC/LC thing. I'll mention it. And, sorry about the migraine. I suffer from cluster migraines. They are an absolute terror. No one understands. I feel for you.
02-15-2012, 05:21 PM   #4
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I am not 100% sure, but I would imagine that with microscopic colitis you could have diarrhea or constipation, just like with Crohn's. Diarrhea would be more common but I think constipation is not out of the question for lymphocytic colitis.

I'm glad pillcam is on the table as well, that's a good one to do in the event that this next c-scope doesn't find anything. I had the pill cam but unfortunately it didn't find anything for me, but nonetheless it is a very good test to have. Unfortunately she will probably have to do prep again - it seems to vary from doctor to doctor, some just require fasting before the pillcam, others like 1/2 prep or full prep to be done. I had to do 1/2 prep before mine.

Cluster migraines, how awful! I am so sorry to hear that. I don't have migraines often - once per month was the most frequent I've had them - and I can't imagine how nasty it would be having them more often than that. You poor thing, an ill undiagnosed child and cluster migraines! I don't have kids and my migraines are fortunately few and far apart these days, I can't imagine what you are going through. Big hugs to you!
02-15-2012, 07:59 PM   #5
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Join Date: Sep 2010

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Hi imwood, I am sorry your daughter is unwell, but glad you are feeling more hopeful as to answers.

We are happy to give advice and experience here, but we're not experts when it comes to undiagnosed kids.

I see from your previous posts you have found the Parents of Kids with IBD forum, they may be able to help you better. I read that forum occasionaly and I am sorry to see so many kids who are sick with no answers.

As Cat says, it is hard enough being an adult and sick, but it really breaks my heart to think kids go through this too!
2006. Tummy issues (more IBD than IBS).
2009 joint pain/worsening tummy issues.
CRP 20-36 2006-now. C3/C4 inflammation markers huge,
2014 IDA & low B12.

June 2014 admitted to Hospital 3 nights as emergency transfused 2 units of blood. Dangerous case of anaemia.
Caught by pure chance!
Cause currently unknown but suspected CD.

Waiting on blood & stool results from January.

Hoping to stop anaemia treatment soon & lower B12 daily dose!
02-16-2012, 08:28 AM   #6
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Join Date: Oct 2010
Location: NY

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Hi ... welcome to this club!
Our GI does write Crohn's on the school forms (because a diagnosis is required) - even though he thinks it is probably not Crohn's. Can you ask your GI to help give you some dx for the forms?
I hope this doctor finds out more. I recently read about some other new markers that can be tested (not in Prometheus) - they are ALCA, AMCA, ACCA .... usually Crohn's patients have one of these high.
Good luck!
Mom to Danny (16), sick since Dec 2008 but current diagnosis uncertain.

(Danny's story)
02-17-2012, 10:18 AM   #7
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Join Date: Apr 2010
Location: Charleston, South Carolina

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Hi, I'm sorry your child is in the undxed club. On the bright side, it sounds like you have a fairly proactive GI. I had similar results to your daughter - my anti cbir1 was the only antibody out of range on my prometheus test. Also, I had "multiple lymphoid nodules" in my c-scope pathology report, which my GI assured me was part of normal colonic functioning. I found this information googling info about lymphoid aggregates, specifically in the comments:

I am sorry that both of you are going through this. I hope that the bentyl will give her some relief, and that if the GI isn't able to find anything on the subsequent c-scope that the rheumy can help her.

Last edited by Mayflower537; 02-17-2012 at 10:18 AM. Reason: typo :)

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