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Crohn's Disease Forum » Parents of Kids with IBD » No Meds- just nutrition and diet?


08-01-2017, 01:55 PM   #1
bethhall3434
 
Join Date: Jul 2017
Location: Forsyth, Montana
No Meds- just nutrition and diet?

I'm starting to look into the possibility of dealing strictly with ET and diet to help my daughters go into remission for Crohns. I have read a few threads about a vegetarian and/or vegan diet that really did help. Have any of you tried it and how were your experiences?


08-01-2017, 03:39 PM   #2
my little penguin
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The only proven diet therapies for Crohns is een
Some have had luck with SCD but most major universities do not recommend SCD for kids since they lose weight and need extra calories to grow
We have all btdt wanting diet alone to be enough
Een is as effective as steriods (100% no solid food )
But most kids can't maintain 100% een due to social psychology issues of not being able to eat
It can cause other emotional issues for kids

Every parent here has read ... and hoped
Only one worked -optimistic in the 7 years I have been here

If your child is still inflamed while on een then the odds of other diet alone working are slim


Is your dd both een (100% no solid food )
Or just partial en -consuming some formula but still eating solids
Anything more than 10% solids with formula is not really een


Good luck
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08-01-2017, 07:02 PM   #3
bethhall3434
 
Join Date: Jul 2017
Location: Forsyth, Montana
Sorry- I don't know all of the abbreviations you use.
What is EEN, is that the same as EN- enteral therapy? My daughters get 80% enteral nutrition through feeding tubes at night. Then 20% from food. I've never heard of 100%...that would be very difficult.

Thanks for replying. My SIL is a health coach and studied nutrition while battling cancer. So she has been talking to me about studies done. We are in the process of getting a 2nd opinion from an MD who does more individualized medicine. It's so hard to know what the right choice is for your kids. I'm glad I found this forum. Thanks for your advise.


08-01-2017, 07:38 PM   #4
my little penguin
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Een is exclusive enteral nutrition
Which is equivalent to steriods
Which means if your dd is still having inflammation while on 80/20 odds are more diet will not be enough
Ds did een 100% multiple times

Please get a second opinion at a university pediatric ibd program
There are no cures for Crohns
It's not the same as cancer
Kids disease Is way more agressive

Many "natural" parents here
Have tried naturopaths etc.., for many things
But Crohns was not something they were willing to do
08-01-2017, 08:55 PM   #5
Mehita
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I'm just going to second everything MLP (my little penguin) said. Pediatric Crohn's is it's own animal with unique considerations for growing kids. Sometimes, it's even hard to compare it to adult Crohn's. I'm not saying that your SIL might not have valuable info, but keep your end goal in mind - remission and growth, ASAP.
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Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013, added Solumedrol June 2015
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
08-01-2017, 09:43 PM   #6
Maya142
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There is one parent here whose kiddo has done well with the SCD diet - I'll tag her: Optimistic.

Most kiddos need more than just enteral nutrition (EN). It works well to induce remission, but the moment food is added back, most kids flare. Exclusive Enteral Nutrition (100% formula) is most effective, though many hospital allow 80% formula /20% food since that is easier.

Our hospital says that trying diet is ok, as long as there is a pre-set stopping point. For example, if your daughter tries diet for 6 weeks and does not improved - based on labs, Fecal Calprotectin and scopes - then they would move on to medications.

MOST kids will need at least an immunomodulator like Methotrexate or 6MP or a biologic. Many kids are given both. Pediatric Crohn's tends to be aggressive and needs to be treated as such. You don't want your daughters to have to deal with damage and complications like strictures, fistulas, abscesses or anything like that.

Treating aggressively lowers the odds of complications. With continued inflammation, scar tissue will build up, and once that happens, there is not much that can be done except surgery.

I say this not to scare you, just to explain WHY pediatric Crohn's is treated aggressively.

For us, the meds were scary, but honestly, the disease was much scarier.
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diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
08-02-2017, 12:19 AM   #7
bethhall3434
 
Join Date: Jul 2017
Location: Forsyth, Montana
We currently see a specialist in Denver at the Children's Hospital. Their specialist is very good, and we like her a lot. Just looking for more info on people who have tried different things. We've been working with Emma for since December 2015, Abby was just diagnosed a month ago, so I still have a lot to learn.

Maya142- you're right the disease is scary and i definitely don't want anything to get worse.


08-02-2017, 04:41 AM   #8
my little penguin
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Boston children's /Cincinnati children's and children's of Philadelphia will do second opinions
By record reviews -where you don't have to take the child
Just send the records
08-07-2017, 01:03 PM   #9
Optimistic
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I'm starting to look into the possibility of dealing strictly with ET and diet to help my daughters go into remission for Crohns. I have read a few threads about a vegetarian and/or vegan diet that really did help. Have any of you tried it and how were your experiences?
Hi there. Sorry, my notification settings are wonky!

My son has had success using a combinations of treatments. First many months of steroids, then EEN, followed by combo of SCD and EN. I won't bore you with the full saga. It is a big commitment to keep the diet, use the formula, and getting the quarterly labs/FCP and yearly scopes and MREs. But he is fortunate that this works for him now. He is healthy and growing as he should be.

I have talked to many drs, researchers and nutritionists about diet. It is not my nature to go "natural". I am completely committed to medicine and science and stepped out of my comfort zone to try this. His main GI is not generally an advocate of any diet, due to the very low compliance rates. Many kids drop out of studies even before they get started, and others are not accepted into the studies because of concerns about how well they can stick to it. I have not seen any data that shows that a modified (even slight) diet gives benefits.

That being said, there are at least a handful of kids for whom it works!

Best to you and your child.
08-07-2017, 02:12 PM   #10
sabrina123
 
Join Date: Aug 2016
My daughter does a combination of a SCD like diet and Pentasa - after steroids. We went to top GI's who recommended / support this approach - as long as we realize we would need biologics if anything changes - symptoms, labs, growth stops again. We are still early on - around 16 months. In the early phase, we were given a short window - believe 8 weeks, to see very good labs and growth restart with dietary measure - if not, we were going to do biologics. (restart on growth was the most critical and seemed tough after over a year of no growth)

On vegan/vegetarian specifically, my main question for your GI consults would be around getting enough vitamin D, calcium, iron, vitamin B. Those vitamins are typically low in a pediatric vegan/vegetarian diet and overlap with areas that can be low in Crohn's pediatrics. Our GI closely monitored these levels every 2, then every 3 months as (1) they closely monitor these levels with dietary treatments and (2) they were low in the height of crohn's symptoms and took a while to get normal. Supplementation is usually done in a vegan diet, but supplementation for us was not enough - it seemed to be the healing.

I would also wonder about eliminating food groups. Our GI worked with us closely on diet and modified SCD (very slightly and carefully), so we had more food options to ensure enough calories and also make it easier to sustain as a tween - i.e., school, social etc. Eliminating more from SCD could be a concern.

hope that helps.
08-07-2017, 02:29 PM   #11
bethhall3434
 
Join Date: Jul 2017
Location: Forsyth, Montana
Sabrina- did the diet work for your daughter or is she on biologics now?

My daughters both do ET which I believe provides them with the nutritional benefits they need. They get 80% of their Dailey caloric intake through ET. After doing more research I want to include more anti-inflammatory foods into our diet. Not necessarily vegan or vegetarian, even though many anti-inflammatory food are produce.

I have looked into the SCD, but I'm not sure if that's the route I would want to take.

I know that this diet will not fix anything, but I figured it's a good start and when my daughters do go into remission it can only help.

My daughter Emma has just started methotrexate, she was diagnosed in Dec. 2015, but my daughter Abby (her identical twin) was just diagnosed in July and right now is strictly ET.

Thanks for the reply. I appreciate knowing what other people have tried and how it worked for them.


08-07-2017, 02:54 PM   #12
sabrina123
 
Join Date: Aug 2016
Sabrina- did the diet work for your daughter or is she on biologics now?

My daughters both do ET which I believe provides them with the nutritional benefits they need. They get 80% of their Dailey caloric intake through ET. After doing more research I want to include more anti-inflammatory foods into our diet. Not necessarily vegan or vegetarian, even though many anti-inflammatory food are produce.

I have looked into the SCD, but I'm not sure if that's the route I would want to take.

I know that this diet will not fix anything, but I figured it's a good start and when my daughters do go into remission it can only help.

My daughter Emma has just started methotrexate, she was diagnosed in Dec. 2015, but my daughter Abby (her identical twin) was just diagnosed in July and right now is strictly ET.

Thanks for the reply. I appreciate knowing what other people have tried and how it worked for them.
She has not done biologics. Our GI just wanted us to be mentally prepared that sometimes diet works for a while, but may eventually need biologics.

We do try to encourage as many vegetables as possible - and I try to use anti-inflammatory foods, but realistically we have a teen and do the best we can. Our GI is really good at understanding teens and knows things are not perfect including some slips. I have read a lot on AIP diets. I sometimes get inspiration from their recipes/social media and it looks appealing to try new things out.. Some recipe books indicate what are AIP / SCD etc. - which is helpful.

We also still do a supplement mix. The probiotics seem to be particularly helpful. i.e, if we stop, notice a slight difference.

Btw - Maybe it is just my kid (s) and could be due to a different med issue, but even when they got the calorie levels right (and she was never underweight) - there were absorption issues of some vitamins. That took a little longer to get to the right level.
08-07-2017, 03:08 PM   #13
Maya142
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There is also the IBD AID diet which is less restrictive than the SCD. Our hospital (one of the top 3 children's hospitals for Gastroenterology) recommends that over the SCD, simply because it's easier on kids.

They find that kids tend to otherwise lose weight on the SCD and of course that does not help with growth. It is also hard from a compliance perspective as little kids grow up and become teens.

Of course, every kid is different and there are some kids who are able to stick with strict diets.

But it's another diet to look it, if you're looking into changing their diets.
08-07-2017, 03:12 PM   #14
bethhall3434
 
Join Date: Jul 2017
Location: Forsyth, Montana
What does AID stand for?


08-07-2017, 03:13 PM   #15
bethhall3434
 
Join Date: Jul 2017
Location: Forsyth, Montana
Never mind Maya142- I found it. Thanks- I'm going to look into this!


08-07-2017, 03:13 PM   #16
Maya142
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http://www.umassmed.edu/nutrition/ibd/ibdaid/

IBD Anti-Inflammatory Diet -- it was developed at UMass I think.
08-07-2017, 03:14 PM   #17
Maya142
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I think we have a couple members who have done it - I know my little penguin did it with her son (though that was in addition to a biologic and other medications).
08-07-2017, 03:15 PM   #18
bethhall3434
 
Join Date: Jul 2017
Location: Forsyth, Montana
I'm going to start with ASAP and see how it goes. It certainly can't hurt right??


08-07-2017, 10:28 PM   #19
Optimistic
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My son started scd when he was moving from full formula to 80/20 and I decided it would not hurt if we put some thought into the limited food he had. It really was a whim back in the early days of diagnosis and panic. The problem is that no formula qualifies for any of the diets! Basically the primary part of his diet is illegal. I still haven't found anyone who can reconcile that.

There are so many different opinions on diet this field. My son's dr hoped he would stay on the 80/20 plan forever and is not an advocate of diets. He even had him take TSPLOT TB test getting ready for remincade, post diet trial. Imagine my surprise when I learned that some of his partners research diets and consistently recommend to appropriate patients. Even expert opinion is all over the board. One well known GI at Boston immediately discounted any hope for diet success while another in his own Dept said he would definitely give it a trial run if his own child had Crohn's.

It can't hurt to try as long as you are conscious of making sure they get more than enough calories needed (your GI should have a nutritionist to help) and all vitamin and min levels stay normal. My son had some issue with maybe vit d, sorry I forgot, early on. Supplements and vitamins aren't "legal" on scd bc of the fillers and gums so that meant we had to be even more careful about what he consumed.

When some people learn my son is on scd I guess they think we are open to anything and they share their own tips that are sure to "cure" him- - organic, vegan, goat's milk, spring water, raw food, burnt food, gluten free, paleo, plastic and metal free, turmeric, omega 3 and cinnamon are most often mentioned. Further out are things like charcoal and Castrol oil consumption!

PS There is a study comparing scd, IBD-aid and organic diets in Crohn's patients. I need to check on status.

Quick add - my son was in clinical remission when he started scd.
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