Sucrose/Maltose/Lactose Deficiency

I thought this was important for all parents on this forum to know about so I am starting a new thread about it.
As some of you may know. My middle daughter was diagnosed as having Congenital Sucrose/Maltose/lactose Intestinal Deficiency.
She was diagnosed through biopsies during a colonoscopy.
Well after much reading and research I discovered that these deficiencies may not be from a congenital reason but can actually be can actually also be caused by damage to the intestines from IBD.
This can explain why some kids with IBD improve in their symptoms significantly when changing to a diet such a SCD.
(Though the thing to be leery of is that even though symptoms are improving is the actual inflammation improving?)
Anyway this leaves me with two thoughts,
One I think it wouldn't hurt to ask your GI doc to test your child for this during their next scope.
And two,
For me does my daughter who was diagnosed with the congenital form of this really have IBD?
Oh and if your child does get diagnosed there is a supplement they can take which helps with symptoms, it is called Sucraid.
Here is the link to the article,
It mentions IBD further in,
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4728165/

Lactose intolerance is the first sign my daughter crohn's is active

Interesting and certainly another thing to keep in mind when kids with IBD are in "remission" but still having terrible symptoms. Right now we suggest testing for gastroparesis maybe we add this to the list. Did they test Caitlyn for this?

As far as your daughter maybe actually having IBD, I think you just have to keep an eye on her. They looked for IBD at scopes right? Took biopsies etc?

The thing with correlations is...a good number of people with disease A could have disease B but that doesn't always mean that people with B will always have A. For example...T has Vitiligo. There are a good number of people with Vitiligo who also have thyroid disease. However, there are way more people who have thyroid disease who do not have Vitiligo.

I hope I made sense there.

I think the important thing is to be aware of the possible correlation so you can stay on top of future testing.

CIC,
They did test her and so far biopsies were negative but she does get really bad mouth sores. She has never had an MRE to look at things further up that you can't see on scope. At this point I will talk with the doc at the next visit. He wants to do the genetic test next. If that comes back negative I think for sure we will have to look further into the possibility that this really might be crohns.
I am going to speak with him at the next visit about Caitlyn.

oh, wow! I didn't realize she hadn't had any small bowel imaging. I thought that was pretty standard protocol these days...I guess maybe when he found the deficiency he stopped questioning Crohn's but it seems like there is enough reason to look further, even if she does have the gene for this deficiency...if there is enough of a correlation, she has two sisters with the disease and he never looked at the small bowel.....

How was her FC? Does this deficiency raise FC also?

Her FC has always been normal. But I understand that if the crohns is higher up it may not raise the FC, I thought I read that somewhere but can't find it now.