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Crohn's Disease Forum » Parents of Kids with IBD » Lack of Mucosal Healing From Modified Specific Carbohydrate Diet in Pediatric Patients With Crohn's Disease


10-08-2017, 08:57 AM   #1
eleanor_rigby
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Lack of Mucosal Healing From Modified Specific Carbohydrate Diet in Pediatric Patients With Crohn's Disease

http://journals.lww.com/jpgn/Abstrac...ecific.10.aspx
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2nd Generation affected

Symptoms since 2006 (age 17)

Emergency open bowel resection after perforation in 2011 (age 22) (wrongly diagnosed as burst appendix ). Three years remission following this unmonitored

DX with perforating small bowel Crohn's Disease 01/2016 (terminal ileum, duodenum) and coeliac disease (age 26)

Meds:
75mg azathioprine
Gluten-free diet
10-08-2017, 09:02 AM   #2
my little penguin
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Good to know
Even if the sample size was tiny ( only 7 kids)


One patient showed complete ileocolonic healing but persistent upper gastrointestinal tract ulceration. Complete macroscopic mucosal healing of both the ileocolon and upper gastrointestinal tract was not seen in any patient.


From
http://journals.lww.com/jpgn/Abstrac...ecific.10.aspx
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10-08-2017, 10:57 AM   #3
richard1353
 
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Hello, Dear Rigby! I can't read the whole article and only read the abstract for paying for downloading that. From the abstract, some patients has relatively lower fecal calprotectin (some papers said that the range of SES-CD's scores is 0-3 if the fecal calprotectin is below about 100) and One out of seven patient showes complete ileocolonic healing, even that the title"lack of mucosal healing".
I think if only SCD makes CD patients in remission without no any medicines, not deeply remission, that diet is a succeed therapy as maintaining like as that "good" condition!


Dear MLP, I want to start to SCD from December under regular medicines from doctor's prescription(as previous mentioned, probably Melazine)and cyclical blood tests to monitor the condition of CD.
Maybe that will be the best way to do! Do you think about that?
10-08-2017, 11:22 AM   #4
eleanor_rigby
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Hi Richard, I will try and get the full article when I am at work tomorrow.
I personally think it is a bad sign if the children already had low fecal calproctectin levels, indicating their disease was mild/moderate, and still the diet did not heal any of their bowels. While one child achieved ileocolonic healing, this same child still had ulceration throughout their small bowel.
10-08-2017, 11:47 AM   #5
richard1353
 
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Hi Richard, I will try and get the full article when I am at work tomorrow.
I personally think it is a bad sign if the children already had low fecal calproctectin levels, indicating their disease was mild/moderate, and still the diet did not heal any of their bowels. While one child achieved ileocolonic healing, this same child still had ulceration throughout their small bowel.
Thanks a lot! In the book of "BTVC", Her daughter keep more than three years or later for doctor didn't tell her when stop SCD! Because the conditions change towards the good direction through SCD, many patients in China try this diet to against IBD!
10-08-2017, 11:54 AM   #6
eleanor_rigby
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Thanks a lot! In the book of "BTVC", Her daughter keep more than three years or later for doctor didn't tell her when stop SCD! Because the conditions change towards the good direction through SCD, many patients in China try this diet to against IBD!
Yes I think we obviously need large trials with big sample sizes. All I can recommend with this diet is if it's the only source of treatment, have regular monitoring and colonoscopies.
10-08-2017, 12:25 PM   #7
my little penguin
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Richard1353

As far as scd and 5-asa for Crohns
That is up to you and your child's doctors


When Ds was first dx like you I only wanted formula only
Couldn't fathom putting my child in meds
Finally agreed to Pentasa (mesalamine -5-asa )
Ds took it for a month
During that time I watched my child become sicker by the day and ear went up not down

Each med change has caused my husband and I tremendous amount of sleepless nights worrying if it is the right move or not

So for ds at least and the majority of kids on here 5-asa did not help
And just let the disease get worse

All of us wanted the latest diet to work
Tried most of them except scd (he is allergic to tree nuts and fish )

And. We wanted to have the minimal meds to work including 5-asa

So we tried them each one at a time
For over a year as my child got sicker
Only briefly better periods with een or steroids


Just watch closely with wahatever you try and be willing to try something else if a cure t therapy isn't working

Since what we want and what works are not necessarily the same thing
10-08-2017, 12:53 PM   #8
Magnolia24
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Can someone who has accessed the complete article tell us what the "modified SCD" was? How controlled were the "modifications?" Was it a few controlled changes like IBD-Aid..Or just SCD + occasional non-SCD foods? The abstract just says "mSCD; SCD + addition of 'illegal foods'"
10-08-2017, 12:57 PM   #9
richard1353
 
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Richard1353

As far as scd and 5-asa for Crohns
That is up to you and your child's doctors


When Ds was first dx like you I only wanted formula only
Couldn't fathom putting my child in meds
Finally agreed to Pentasa (mesalamine -5-asa )
Ds took it for a month
During that time I watched my child become sicker by the day and ear went up not down

Each med change has caused my husband and I tremendous amount of sleepless nights worrying if it is the right move or not

So for ds at least and the majority of kids on here 5-asa did not help
And just let the disease get worse

All of us wanted the latest diet to work
Tried most of them except scd (he is allergic to tree nuts and fish )

And. We wanted to have the minimal meds to work including 5-asa

So we tried them each one at a time
For over a year as my child got sicker
Only briefly better periods with een or steroids


Just watch closely with wahatever you try and be willing to try something else if a cure t therapy isn't working

Since what we want and what works are not necessarily the same thing
Dear MLP, Yes, every parent can understand the feeling! My states are not good since my child got this disease in August! I have already changed my mostly things that can upgrade my job! I have only one thing to do when I come back to China. That is to try my best to induce remission and keep in remission, deeply in remission in my hope! I'm a fresh man in this forum and stay here only two months! I need your and similar to your useful help and suggestion! I am ready to fight in this long "war"! We are together to share the experience and correct important something that is different between two countries!
10-08-2017, 02:16 PM   #10
my little penguin
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http://www.crohnsforum.com/showthread.php?t=82033

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