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Crohn's Disease Forum » Parents of Kids with IBD » Sucrose/Maltose/Lactose Deficiency


02-08-2016, 08:37 PM   #1
kimmidwife
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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/
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Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
02-08-2016, 09:42 PM   #2
Catherine
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Join Date: Jan 2012
Location: Melbourne, Victoria, Australia

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Lactose intolerance is the first sign my daughter crohn's is active
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Catherine
Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
02-08-2016, 10:13 PM   #3
crohnsinct
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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.
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Methotrexate (12.5mg wkly - oral)
Vit d 2000IU
Multi vitamin plus iron
Calcium
Folic Acid
Previously used - Prednisone, Prevacid, Enteral Nutrition

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohns
Methotrexate (15mg weekly oral)
Enteral Nutrition
Entocort
IBD-AID Diet
Vit d 1000IU
Calcium
Folic Acid
Previously used: Mtx injections
02-08-2016, 10:32 PM   #4
kimmidwife
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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.
02-08-2016, 10:39 PM   #5
crohnsinct
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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?
02-08-2016, 11:10 PM   #6
kimmidwife
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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.
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