scope results and lots of questions?? help!

Dear all,
I was wondering if anyone would be able to advise. My daughter was doing fabulously on paleo plus asas (which I don't think were doing anything as they never have before) for four months. Her colitis was in remission (clinically and I have reason to think histologically). But she developed these hives/rashes when we started teh diet. I believe she can't clear histamine from her body due to mucosal inflammation or some potential genetic reasons that I'm having tested/exploring.

A few weeks ago, coinciding with the change of seasons, she started flaring and her rashes started getting worse. This could be because of the UC flare or because of the histmaine/pollen, I don't know. I'm convinced the change of seasons caused the flare. Histamine.

So, I had to fight her GI for scopes as the only option again is remi/surgery. Due to this flare she had to go back on pred and was on it for about two weeks before scopes. Her flare was moderate - night waking 2-3 times, dripping blood, total bms about 7-12 a day, but NOT the 20-30 a day with clots we've seen in the past. I believe this because we stared the pred.

Now, the GI has said that her scopes visually showed grade 0.5 colitis with NO ulceration. Normal is 0 and severe is 4. There was vascularity, which is good. TI and upper GI looked clear but in the past she's had microscopic inflammation in the duodenum and stomach so this doesn't mean much until the path comes back.

My question is, why do you think her colon looked so good? She's had three scopes now. She was clearly having severe enough symptoms for pred otherwise I'd never have given it to her. I was under the impression that pred could not cause mucosal healing. Anyone know if that's true or have any ideas?

Thanks!

How have her scopes looked in the past?

My scopes have a history of looking about one or two grades "better" than you'd expect based on the symptoms I was experiencing at the time. I can't say why this is but it held true when my symptoms were milder and when they were less severe.

PK on her first scope.
Kazbern, yes it's possible and certainly pred likely did reduce the grade of her colitis symptoms but my question is does anyone know if it can reduce the grade on the scope? I thought it didn't cause mucosal healing?

Liz, yes we were told there's no correlation between symptoms and how the disease looks on scope but at the same time i wasn't expecting it to look so good on scope.

Interesting. I've always been told/read that pred could not do that, ie:

"The inability of steroids to heal the bowel, although they effectively down regulate inflammation, may be due to their deleterious effects on tissue restitution in segments of bowel with deep ulcers."

http://www.ncbi.nlm.nih.gov/pmc/articles/pmc1856849/

Well that answers that! I guess i've just assumed that b/c it does not cause mh is CD it wouldn't in UC. Thanks for that (should have read the paper I suppose). Okay guess it was the roids after all, though previous scope on roids was way worse and she'd been on them for a lot longer. Oh well.

Thanks sciencegirl, she takes ketotofen which is a mast cells stabilizer and this was working well until the last month with her flare/change of weather. I don't know which made things worse but I believe they're very connected. I went so far as to have her biopsies from her previous scopes reexamined by a pathologist who specializes in mast cell disorders/mastocytosis and IBD. Thankfully, he found nothing but UC on those. Just cementing my rep as a total wacko parent amongst the Drs in my city. She's seen two allergists and yeah they thing it's "just" uriticaria but I want some further testing done. I'll look into zantec - we're playing around with H1/H2s at the moment to see which combo will work. I hope we don't have to go any further than that! She can't take any anti depressants as she's a child and they have serious side effects potentially in kids. Thanks for all of the info. It's odd, the allergists keep telling me how common urticaria is and I think there are three or four others who post regularly on this board who have it. I guess it's the messed up immune system and one makes the other more likely? don't know. Do you have any other allergies?

well that just goes to show that uc and cd really are two different animals. reading about this more, mucosal healing doesn't really seem to alter the course of the disease with UC which makes sense in a way but then what is the point of biological therapy in UC other than to delay surgery? I think I know the answer to that but any thoughts?

Our Gi says that because UC is a true relapsing and remitting disease (unlike CD which is less so) if we can get her into a very good remission with whatever drug (not pred) then we can take her off at some point (though we won't want to at that point according to her, as most parents say they will but are so happy when it works they keep going with it). Our first GI said remi was a bridge to surgery, which I've always assumed as well and it does seem to be most people's experience. I'm confused and too tired to read up but from what i've read remi delays but does not prevent colectomy. will check later.

Have you thought about taking her to a rheumotologist? Lupus and UC can sometimes coexist. Not trying to scare you but it is possible that she is having a lupus flare instead of a UC flare. I'm not a doctor and I am not an expert. Just an idea. Hope she gets better soon

A lot of people can be positive for ANA but not have lupus (in fact, a lot of people with any AI disease have positive ANA), so I'd recommend having all of the lupus tests done (anti dsDNA, complements, etc.). She doesn't have any other symptoms of lupus, does she (e.g., butterfly rash, joint pain)?

I do think that having a messed up immune system from UC (or whatever else) affects the severity of allergies--my environmental allergies and oral allergy syndrome got MUCH worse after UC, and I developed chronic pruritis. However, my allergist says that he doesn't know for sure, that he has many autoimmune patients whose allergies did not worsen after getting an AI disease.

I'm not sure what the stats are on biologics and surgery for UC. There is one study for CD (http://www.gastrojournal.org/article/S0016-5085(11)01293-5/abstract). My GI is comfortable with patients going off of Remicade if they've been on it for 4-5 years and they're in clinical and histologic remission. I think there are a few people on here who've done that (Lonie comes to mind). I've never had a GI say that Remicade was a bridge to surgery, but colorectal surgeons did...