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SCD diet

Hi everyone! I’m not sure if there is already a thread for specific carbohydrate diet or not....is/has anyone tried it with your kiddos? We have been thinking about it for some time now and are finally going to give it a try, looking for any helpful tips and advice. Thanks in advance 😊
 

my little penguin

Moderator
Staff member
Children’s hospital of Philadelphia
#1 pediatric ibd center in US

What meds is your kiddo on??
What about cded (crohns exclusive diet)?
Works for refractory crohns in some
Easier for kids and allows formula
 
He is currently on weekly Humira, methotrexate, and vancomycin. I have not looked into cded but I will definitely make it a priority, thank you for the suggestion.
 

my little penguin

Moderator
Staff member
Meds not holding him or looking to get him in remission with diet plus meds ??
Ds drinks 50% formula (Neocate jr choc ) plus food and meds (Stelara/mtx )
That keeps things ok for the most part
Was on humira every 5 days plus mtx

Might need a boost


Here are some links about EEN and exclusion diets (most of the research is on kids):

www.healio.com

Crohn’s Disease Exclusion Diet well-tolerated in children
SAN DIEGO — The Crohn’s Disease Exclusion Diet appeared to be an effective and well-tolerated, first-line therapy for children with mild-to-moderate Crohn’s disease, according to data presented at Digestive Disease Week. “We have emerging data to show the strong influence of the environment, and...
www.healio.com
www.healio.com

Dietary Therapy With the Crohn's Disease Exclusion Diet is a Successful Strategy for Induction of Remission in Children and Adults Failing Biological... - PubMed - NCBI

Update on elimination diets
ECCO - European Crohn´s and Colitis Organisation. The European Crohn\'s and Colitis Organisation is a highly active non-profit association focusing on Inflammatory Bowel Diseases (IBD).
www.ecco-ibd.eu
www.ecco-ibd.eu
 
Meds are borderline, they keep him at bay most of the time (exterior, labs and colonoscopies say differently), I do not believe he has ever been in remission since diagnosed at 2 1/2 y/o. We can’t get rid of c.diff and been on vancomycin for years. If we can improve anything we will count it as a success. Thank you again!
 

my little penguin

Moderator
Staff member

Long thread on cded

We also use probiotics (prescription strength ) for ds visobiome
Seem to help his rectal issues (prolapse )

Can they switch types of meds ?
Stelara works on different path ways
When was he dx
Anything before age 8
Is considered veo
Chop has a veo clinic where they do whole exome sequencing to try and help get the best meds for the kids and treatment
The study is through nih
But kids are seen in Chop
 
He was diagnosed at 2 1/2, after several very long months of not knowing, he is now 8. We have done many different meds and med combinations. Stelara is next on the list but we are kind of “saving” it for fear of it not working and not being able to get back on Humira.
 

my little penguin

Moderator
Staff member
Send his records to chop veo clinic
Kids that young are difficult to treat
And this clinic specializes just in those kiddos
Only see kids who were dx before age 8


They are beyond awesome and gather a team of different specialists on one room just for your kiddo
The docs come to you
You don’t have to leave the room
Definitely call and see
They have financial aid rtc
And see patients around the world
 
Thank you for all your suggestions 😊.
We did travel to Boston Children’s at one point, unfortunately nothing really came of it. Good to know about CHOP.
 

my little penguin

Moderator
Staff member
We went to cchmc (Cincy ) once for 2nd opinion
Nada
But went to chop veo and it was nothing short of amazing there
This is with Ds who was dx at 7
Mild crohns but lots of extra stuff that tags along
They actually look for answers
Truly wonderful
 

Maya142

Moderator
Staff member
Meds are borderline, they keep him at bay most of the time (exterior, labs and colonoscopies say differently), I do not believe he has ever been in remission since diagnosed at 2 1/2 y/o. We can’t get rid of c.diff and been on vancomycin for years. If we can improve anything we will count it as a success. Thank you again!
cre, I'm sorry to hear your son has been dealing with C.Diff for so long. Have you tried other antibiotics, besides Vancomycin? My daughter had recurrent C.Diff and just recently managed to get rid of it. She had it twice after being diagnosed with Crohn's and both times, using antibiotics for another infection triggered it (sinus infection, throat infection). Both times we treated with Vancomycin and it went away.

But last November, she got it a 3rd time, following a skin infection and Keflex and that time we just could not get rid of it. Vancomycin did not work. We re-tested after she'd finished 2 weeks and she still had C.Diff. Then we tried Dificid. That worked - she had a negative C.Diff test. But then symptoms returned. Anyway, we did several more course of Dificid, including 2 month long one, with a taper. Every time we finished (and stopped) abx, C.Diff symptoms came back and so we were referred to Infectious Diseases for a fecal transplant consult.

We were told my daughter's use of antacids was putting her at risk for C.Diff relapses and until we lowered the doses, an FMT (Fecal Microbiota Transplant) would not work. We were able to reduce the dose of her PPI by half and stopped Pepcid (she's allowed to use Carafate and Maalox instead). Then did an FMT, via colonoscopy. At that point, she'd had C.Diff for pretty much 6 months straight.

The procedure was not fun (more prep than a typical scope) but it worked!! She's had 2 negative C.Diff tests since then! And her joints, which were flaring for 6 months, have started to calm down!
 
Hi. My son has used SCD as part of his treatment for about 5 years.

He left hospital on EEN and steroids. 8 weeks later he was feeling pretty good and FCP improving but no approval yet for remicade. He tried to wean steroids and and would not do more EEN so we tried 50% SCD and 50% EN as sort of a stop gap / Hail Mary. He continued to improve so here we are with SCD and maybe 20% shakes.

I’m a science and data lover and that is one of my concerns about SCD. Even the dr who suggested it doesn’t know how it works and very rarely recommends it. Drs at 3 major centers in US and Canada have reviewed him or his case and the best guess is maybe the combo of SCD and some gut rest from shakes work together. Even the most skeptical recommends he continue.

Compliance is the first hurdle. I do a lot of planning and he has to take that on as he ages. I’m sure there are hotels and restaurants with my picture as craziest visitor ever. Socially it is challenging bc some adults call attention (kids don’t seem to care) or they even challenge it which is last thing a kid wants.

Monitoring for growth and any signs of flare adds more complexity. The first few years he did quarterly FCP, labs and GI visits. He still has scopes and MRE every 12-18 months. For years a dietician tracked calories and made us keep weight and calorie logs. There were days I followed him around begging him to drink or use tube before all this became normal.

I don’t want to sound too negative. I’m well aware that Crohn’s is awful and many face difficult situations over and over. I really didn’t find anyone who religiously followed SCD under a drs guidance so didn’t know what to expect. I’m grateful, that’s for sure!

I think there is some work in Israel on diet and EN combo. Of the places we’ve been Boston was least into this sort of treatment.

Oh, and there are no shakes that are qualify under SCD. None. One dr who is not a fan of diets likes to tell me the shakes are packed with illegal ingredients.
 

Maya142

Moderator
Staff member
Compliance is the first hurdle. I do a lot of planning and he has to take that on as he ages. I’m sure there are hotels and restaurants with my picture as craziest visitor ever. Socially it is challenging bc some adults call attention (kids don’t seem to care) or they even challenge it which is last thing a kid wants.

Monitoring for growth and any signs of flare adds more complexity. The first few years he did quarterly FCP, labs and GI visits. He still has scopes and MRE every 12-18 months. For years a dietician tracked calories and made us keep weight and calorie logs. There were days I followed him around begging him to drink or use tube before all this became normal.

I don’t want to sound too negative. I’m well aware that Crohn’s is awful and many face difficult situations over and over. I really didn’t find anyone who religiously followed SCD under a drs guidance so didn’t know what to expect. I’m grateful, that’s for sure!
Yikes Optimistic!! I had no idea your son had such a hard time with this at first. It's incredible that he has managed to stay with it through his teen years. I hope he'll try to stick with it in college😑...Having a young adult is hard!
 
Hi. My son has used SCD as part of his treatment for about 5 years.

He left hospital on EEN and steroids. 8 weeks later he was feeling pretty good and FCP improving but no approval yet for remicade. He tried to wean steroids and and would not do more EEN so we tried 50% SCD and 50% EN as sort of a stop gap / Hail Mary. He continued to improve so here we are with SCD and maybe 20% shakes.

I’m a science and data lover and that is one of my concerns about SCD. Even the dr who suggested it doesn’t know how it works and very rarely recommends it. Drs at 3 major centers in US and Canada have reviewed him or his case and the best guess is maybe the combo of SCD and some gut rest from shakes work together. Even the most skeptical recommends he continue.

Compliance is the first hurdle. I do a lot of planning and he has to take that on as he ages. I’m sure there are hotels and restaurants with my picture as craziest visitor ever. Socially it is challenging bc some adults call attention (kids don’t seem to care) or they even challenge it which is last thing a kid wants.

Monitoring for growth and any signs of flare adds more complexity. The first few years he did quarterly FCP, labs and GI visits. He still has scopes and MRE every 12-18 months. For years a dietician tracked calories and made us keep weight and calorie logs. There were days I followed him around begging him to drink or use tube before all this became normal.

I don’t want to sound too negative. I’m well aware that Crohn’s is awful and many face difficult situations over and over. I really didn’t find anyone who religiously followed SCD under a drs guidance so didn’t know what to expect. I’m grateful, that’s for sure!

I think there is some work in Israel on diet and EN combo. Of the places we’ve been Boston was least into this sort of treatment.

Oh, and there are no shakes that are qualify under SCD. None. One dr who is not a fan of diets likes to tell me the shakes are packed with illegal ingredients.
Thank you for the insight, I appreciate all we can get...good, bad, and ugly. Our doctor has been suggesting SCD for over a year and we have not really considered it too much until recently. Our main concern is not getting enough calories as he is having growth issues already, so we will monitor that. We are on board to try and and figure worst case scenario, we have to stop. I know it may not work but I am hopefully and have heard many success stories, including patients of our doctor. After years of getting injections he is beginning to have a hard time with them and this was our tipping point. I am just beginning to meal prep 😬
 
Ha! Meal prep, such fun.

I tried unsuccessfully to get rest of family to eat like him to save me some work. No luck. We do pretend we enjoy cakes made with avocado or black beans for his birthday, with homemade cashew milk!

Our GI has several patients who have had success for a few years. Maybe your son will be the next!
 
CRE - just a thought...could the recurrent c diff explain symptoms and off labs?

I am a big fan of diet to complement Pharma. We have done a few things. We went vegan to help with overall inflammation etc.My daughter was doing rather well at the time but was always just a little inflamed etc. We cut out all processed foods and ate a very anti inflammatory diet. Nothing too dramatic except cutting out animal products. Her health soared. Our GI who was not a fan of diets said he couldn't explain it but whatever we were doing to keep doing it. From that point, anytime she went off the diet he could tell with her labs. She eventually got into a deep remission and went off that diet....COLLEGE!

My younger daughter did EEN and Methotrexate at dx. EEN worked to get her to clinical remission but not biologic remission. Over time we added just a little food and clinical symptoms came right back. She used the IBD Aid diet. A variation on a theme of the SCD Diet.

My oldest is using the CDED now. I personally find this the most restrictive...don't ask me why, I just do. It is too early for me to say whether or not it is working.

Weave found that it is hard to manage disease with diet alone and meds are a necessity but diet as a compliment and especially for symptom resolution could be very helpful.

Interesting the comments about Boston here. We also got a second opinion at Boston as they were the number one pediatric IBD center at the time and we were not impressed. It is huge department though so wondering if we all saw the same doc. I think we saw the same doc Optimistic saw.

Optimistic...my family loves Black Bean brownies! I wonder the recipe is SCD friendly....check out this website. We LOVE just about everything we make from her site. But I haven't really looked over the recipes to see which diets they fit into so you would have to check but she gives a lot of substitution advice.

 
cre, I'm sorry to hear your son has been dealing with C.Diff for so long. Have you tried other antibiotics, besides Vancomycin? My daughter had recurrent C.Diff and just recently managed to get rid of it. She had it twice after being diagnosed with Crohn's and both times, using antibiotics for another infection triggered it (sinus infection, throat infection). Both times we treated with Vancomycin and it went away.

But last November, she got it a 3rd time, following a skin infection and Keflex and that time we just could not get rid of it. Vancomycin did not work. We re-tested after she'd finished 2 weeks and she still had C.Diff. Then we tried Dificid. That worked - she had a negative C.Diff test. But then symptoms returned. Anyway, we did several more course of Dificid, including 2 month long one, with a taper. Every time we finished (and stopped) abx, C.Diff symptoms came back and so we were referred to Infectious Diseases for a fecal transplant consult.

We were told my daughter's use of antacids was putting her at risk for C.Diff relapses and until we lowered the doses, an FMT (Fecal Microbiota Transplant) would not work. We were able to reduce the dose of her PPI by half and stopped Pepcid (she's allowed to use Carafate and Maalox instead). Then did an FMT, via colonoscopy. At that point, she'd had C.Diff for pretty much 6 months straight.

The procedure was not fun (more prep than a typical scope) but it worked!! She's had 2 negative C.Diff tests since then! And her joints, which were flaring for 6 months, have started to calm down!
I’m sorry for that long road of C. Diff you had to go down but so happy she got rid of it Yay!

I think we did try other antibiotics that didn’t keep it away. It has been a few years so I can’t remember exactly but I do know we did a fecal transplant (I will never forget that!😬)! He has been in vancomycin for at least 3 years and is without symptoms and positive c.diff results. We tried taking him off vancomycin and C. Diff was back within a couple of weeks.
 
Hi. My son has used SCD as part of his treatment for about 5 years.

He left hospital on EEN and steroids. 8 weeks later he was feeling pretty good and FCP improving but no approval yet for remicade. He tried to wean steroids and and would not do more EEN so we tried 50% SCD and 50% EN as sort of a stop gap / Hail Mary. He continued to improve so here we are with SCD and maybe 20% shakes.

I’m a science and data lover and that is one of my concerns about SCD. Even the dr who suggested it doesn’t know how it works and very rarely recommends it. Drs at 3 major centers in US and Canada have reviewed him or his case and the best guess is maybe the combo of SCD and some gut rest from shakes work together. Even the most skeptical recommends he continue.

Compliance is the first hurdle. I do a lot of planning and he has to take that on as he ages. I’m sure there are hotels and restaurants with my picture as craziest visitor ever. Socially it is challenging bc some adults call attention (kids don’t seem to care) or they even challenge it which is last thing a kid wants.

Monitoring for growth and any signs of flare adds more complexity. The first few years he did quarterly FCP, labs and GI visits. He still has scopes and MRE every 12-18 months. For years a dietician tracked calories and made us keep weight and calorie logs. There were days I followed him around begging him to drink or use tube before all this became normal.

I don’t want to sound too negative. I’m well aware that Crohn’s is awful and many face difficult situations over and over. I really didn’t find anyone who religiously followed SCD under a drs guidance so didn’t know what to expect. I’m grateful, that’s for sure!

I think there is some work in Israel on diet and EN combo. Of the places we’ve been Boston was least into this sort of treatment.

Oh, and there are no shakes that are qualify under SCD. None. One dr who is not a fan of diets likes to tell me the shakes are packed with illegal ingredients.
@Optimistic , do you know anything about a2 milk? I was wondering if it is SCD legal but cannot find anything about it and SCD?
We are successfully completing day 4 of SCD and I have been in the kitchen more than I ever have been in my life 🤣!
 

my little penguin

Moderator
Staff member
@cre
From someone whose kiddo has severe food allergies that limit diet
Cook in bulk and freeze as much as possible
So you eventually only have one serious kitchen day a week vs normal prep
Of course when kiddo decides the dish they loved they now hate .....🙄

Good luck
 
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@Optimistic , do you know anything about a2 milk? I was wondering if it is SCD legal but cannot find anything about it and SCD?
We are successfully completing day 4 of SCD and I have been in the kitchen more than I ever have been in my life 🤣!
Milk products are allowed only if lactose sugar has been removed - such as fermented (homemade) yogurt and aged cheeses.

I think a2 still has lactose sugar. Their thing is only one protein which is supposedly easier to digest. May be but it isn’t a fit with SCD.

Did you make almond or cashew milk? It isn’t hard and you can add allowed flavorings. Store bought nut, coconut, really most types of “milks” are loaded with chemicals and sugars that aren’t allowed.
 
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