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New diet Ibd

Ummmm...well you know I have. Pretty similar to what we are supposed to be following with T.

I think Maya posted about the emulsifiers on T's thtread. It also appeared in the adult section of the forum. I had read about it before also.

I have a folder from the dietician from our hospital chuck full of research on diet and they all are bout the same as this one.

The way I feel about it, once I made the decision to go with the meds, the decision to try diet is easy. If it helps...great. If it doesn't...still great.

Supposed to help with arthritic inflammation also.
 

Maya142

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Staff member
That article about emulsifiers is on Medscape I believe. Very interesting - wish I had a kid who'd agree to try diet! We've done gluten free and that didn't help so she thinks ALL diets won't help :yrolleyes:
 

my little penguin

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Staff member
Gi gave DS a choice
He feels crummy and felt better on EEN for 10 days so adding one food at a time very slowly to figure out what is irritating his Gi tract .
 
Maybe it's just me but I feel like clarification is needed on the beverages. When I first read the line that says "water, soda, herbal teas" I was shocked because I thought they were saying that sodas (meaning soft drinks) were allowed and clearly it later states (as you'd expect!) that they are not.

I guess they mean soda water but perhaps I'm not the only one who finds that confusing.
 
Good point and clarification MLP. My daughter is on a version of an IBD diet. A combo of what has come out of the research in Israel, Japan and Umass.
Many more foods are allowed there BUT they are all whole foods, no sugar, no dairy and very little meat and seafood. But this was added once she had completed her 6 weeks exclusive enteral nutrition and it has been a slow transition.
 

my little penguin

Moderator
Staff member
The paper has a second diet for weeks 6-12.not list on the website
DS is ready for that one yet .
Gi will provide that one once we get there
 
Very interesting to see that they had good success inducing remission using the diet alone (albeit for a very small sample size). Good to know for those who can't tolerate the formulas.

Crohnsinct - I'd be really happy to hear more about the phase of the diet that your daughter is doing and the process of reintroducing more foods. Always interested in diet research :)
 
:yfrown:Grrrrr my hubby and I could read the study posted in post # 7 but not the others. My laptop hates me. :cool:

:shifty-t:We still couldn't see the 15 food you could have.

I'm thinking of sending this to Grace's GI and asking what she thinks.
 

my little penguin

Moderator
Staff member
Why would Grace need this ?
This is used to induce remission not as maintence meds...
Only works for 6 weeks .

Is her GI tract flaring ?
I thought only her JIA was flaring not her ibd ....
 
My little penguin, my understanding just on a quick read is that they do suggest avoiding or minimizing consumption of a lot of these foods after the six weeks so in that respect this is surely still a useful basis for a maintenance diet.
 
Thanks for posting the link to the study, MLP. The link between IBD and diet is so interesting. We've found my daughter's symptoms are very responsive to diet, and she also responded very well to 90% EN with Peptamen.

What still leaves me scratching my head, though, is that the ingredients of the formulas used for EN are not what you'd think would work. The unflavored Peptamen that my daughter used for EN has maltodextrin as its first ingredient, and also contains cornstarch, soybean oil, and guar gum. The first four ingredients of Modulen (used in this study) are glucose syrup, casein, sucrose, and milk fat. It's just strange how in the study's discussion section, the authors talk about how ingredients like maltodextrin, sugars, milk fat, and emulsifiers have been linked to intestinal permeability. (I'm not trying to say that the formula ingredients are bad--they worked really well for us!--but just that they don't make sense to me.)

The study's list of acceptable foods looks a lot like what my daughter ate for her 10% food, but we also found that she did well with low lactose dairy like yogurt, lactose free milk kefir, and cheddar cheese.
 

my little penguin

Moderator
Staff member
They are listed in the appendix
Allowed daily meals : foods may be grilled fried baked boiled or broiled
Unlimited chicken/fish
Fresh unprocessed beef steak ( lean meat such as sirloin ) once a week
White rice
Rice noodles
2 fresh potatoes peeled not frozen and not consumed at same meal
2 eggs
2 tomatoes
2 cucumbers peeled
1 carrot ( shavings )
Fresh spinach ( side portion)
1 apple ( peeled )
2 bananas
1 avacado
Few strawberries
Slice Melon
Allowed condiments for cooking
Olive oil
Canola oil
Salt pepper paprika cinnamon stick
Fresh herbs ( mint leaves oregano coriander Rosemary sage basil thyme)
Fresh onion or garlic or ginger
Fresh carrot shaving for salad rice or soup
True honey
Table sugar (2-3 teaspoons a day for cooking or tea)
Beverages -soda water , water herbal teas
One glass of freshly squeezed Orange juice daily ( not from cartons or bottles)


Not allowed
Dairy products of any kind margarine
Wheat breakfast cereal breads and baked goods of any kind yeast for baking
Gluten free products not listed above soya products potato or corn flour
Processed or smoked meats and fish (sausages luncheon meats salamis fish sticks)
Sauces salad dressing syrups or jams of any kind
Canned products or dried fruits
Packaged snacks (potato chips pretzels popcorn nuts etc)
All soft drinks fruit juices and sweetened beverages alcoholic beverages coffee
Candies chocolates cakes cookies and gum
 
Very interesting but we are in a similar boat to Maya. My daughter refuses to try diet. I am going to really really try to push this with her.
Looking at the list MLP posted, the doctors have always told us no fresh fruit or vegetables during a flare. But this list has some fruits and veggies on it. It seems contradictory.
 
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my little penguin

Moderator
Staff member
I think there is a big difference between raw and fresh
Fresh veggies/fruits means you can't buy and cook frozen or canned.
At the top it states you can cook the following foods
So if veggies /fruits bother your kid then cooking them is an option.
This is not a one diet fits all just an option for those who can tolerate EEN for 6 weeks .
Also the fruits listed are known to not iritate most guts ( again not all)
Since all are soft mushy except apples
The veggies are extremely limited carrots are shavings only etc...
But nothing states they have to be in a raw state just fresh .

Just like any other diet this will not work for most
May only work for a few.

DS wasn't in a full flare but because we held his humira so long he needed a boost to move forward so that is why we chose this route vs 6 weeks of full EEN
 
24601, I think soda water just means carbonated water. I think a little sodium is added in the process, but no other flavouring or sweeteners. Like Perrier, perhaps?
I like this list. The allowable foods make up the bulk of my son's diet. One should be a bit cautious about the onions and garlic though. I know they are good for you, but can cause digestive issues in some. Also, honey should not be given to very young children.
 

my little penguin

Moderator
Staff member
The main thing about this diet is at least 50% of the calories need to come from formula because it increases the chance of success and two the diet does not any calcium and very little fat which growing kids brains need
;)
 
I put an inquiry into using this diet with her 70/30 EN as she is in flare.

I am curious if it is on the radar at our hospital.

How's it going?
 
Really well
Ds abdominal pain went from a 7-8 most days with up to 10 BMs per day plus other symptoms
To avg belly pain 1-2 and 1-2 bm per day
That said we only are trailing one food at a time to figure out which foods were triggering
Some are clear cut ( chicken ) while others go in the maybe pile to trial later
So he is actually closer to 80/20
Typically he drinks 6 peptamen jr with prebio a day
Plus food ( watermelon for lunch ....and eggs:potatoes:tomatoes for dinner )
Ds is well past the 6 week mark closer to the 12 week mark ( end of this week )

It's very hard on Ds emotionally since he is older and there isn't an end pint for this diet for him but physically he feels a lot better .
His labs improved as well .

Just be aware it doesn't permit any packaged /canned or frozen foods
Everything is in whole form and fresh .

He just craves foods bacon chicken wings pizza etc ....
 
Poor guy. It's impossible for them to see the big picture. They are too young. Heck, even us seasoned adults statistically can't hack a rigid diet. Even for health reasons.

Is he moving to that second list yet?

And what gives on the frozen stuff? I thought frozen fruit and veggies were nutritionally comparable to fresh?
 
He is moving on to the second list
He had a lot infections ( nothing serious ) but lots of abx and still on pred so trailing things got more complicated.

Trying to wean pred ( arthritis stuff)

As far as form of food nutritionally its is the same but not how it effects the gut.
Oxidation is one of the many things that are reduced with this diet .
Juices ( even fresh squeezed have more oxidation than fresh fruit )
Same with frozen

Ds has had spiral veggie noodles ( carb free )
So far his good list
Eggs
Potatoes
Tomatoes
White rice
Honey
Avocados
Melons ( cantaloupe /watermelon /honey dew)
Cooked apples without skins
Bananas
Strawberries
Beef ( sirloin)
Small amounts of cooked onions/leeks
Nuts ( crushed)

Failed
Chicken
Almond flour
Halibut
Tilapia
Wheat homemade bread(??)
Orange juice( reflux)

Maybes
Coconut ( ice cream/oil)
Butternut squash
Zucchini
Pickles( homemade)
Oatmeal
Blueberries
Cocoa
 
Another thing we see his Gi Monday and are asking to combine the diet with
The ibd-aid diet
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3896778/?report=classic
Since the exclusive crohns diet gives very little guidance after the first 13 food list
Other than just all fruits/veggies/nuts plus limited whole wheat bread .

The ibd-anti inflammtory diet has phases for each of the veggies
And allows some hard cheeses that are lactose free but doesn't allow any wheat
So will see what the Gi says
 
For some reason I was thinking this was IBD-AID. I'm going to print off both and compare. This is the first I've heard about oxidation. Off to google.

Curious to see what the GI says. I hope the visit goes well overall.
 
Gi visit went well
Gi is happy
Continue adding to the diet one food at a time then eventually reduce formula
Permitted to use ibd-aid list as well since I am only adding one food at a time
Basically building a new diet for life not just 6 weeks
 
Mr chicken, is it by symptom presentation with a goal of symptom reduction? I remember he was experiencing stomach pain so was this diet implemented to address symptoms directly or did blood work, testing show inflammation the GI wanted to address with this diet. I'm assuming it would be much less effective if there are no outward symptoms to foods or inflammatory markers aren't indicators of inflammation?
 
Ds is complicated
Bloodwork most often shows up as normal as do scopes( only microscopic) imaging etc...


Diet was tried based on symptoms
Severe abdominal pain/cramping / rectal pain /prolapse /nausea/vomiting /fatigue that started last thanksgiving and kept getting worse
Multiple ER visits and two admits .

Diet reduce BMs from 10-15 per day to 1-2
Abdominal pain from 7-8 down to a 1-2

Each food it is fairly obvious within 4 -5 hours of eating symptoms markedly increase
Remove the food and he is back to baseline within a day or two
I am adding foods from the lists to have a higher success rate

Ds has had Gi issues since birth and has had a restrictive diet of some sort until recently ( past year or so )
The difference is amazing
 
That's amazing! I hope the diet continues to help! It doesn't seem to be something we could try as C has never reacted to foods. I mean before dx, anything he ate bothered him but siince remicade and other meds were started he's not had any reactions to foods or anyrsymptoms really.

His diet has been fairly clean anyway except when the doc was trying to get weight gain and wanted him to stuff himself with high calorie foods plus EN. the list isn't far off from what he eats excluding tomatoes or melons, he doesn't like the texture plus he probably has steak once a week which may be more than the diet calls for.

I may show it to him anyway though.
 
Honestly before we actually started this diet
I would had said nothing symptom wise was relayed to food
Until I took it all away for over two weeks nothing but formula
And systematically added one food at a time back in

The original diet was designed to be able to eat all of the 13 plus foods at once as well as formula but given Ds allergy history
It seemed easier to try them one at a time to see if any particular foods were irritating his Gi tract .
 
I'm going to show him this study and see what he thinks but C doesn't have symptoms at all. He's not had stomach pain and he has 1-2bms a a day that are normal consistancy. There would be no way to determine which foods to add or eliminate but maybe we just do the whole 13 and see what next scope shows.

We had this problem when we tried elimination diet too. C just got frustrated that I was constantly asking are you sure there's no difference or that I wanted to wait to add in the next food to be certain. This asymptomatic stuff is so complicated when you artrwanting to try different things since he can't see/feel a difference yet the inflammation just keeps on keeping on.
 
Clash it's suppose to be as effective as steriods at inducing remission
It's not suppose to be long term
But given our results
The Gi wants to try it for as long as possible
 
Mr chicken--will you try to reintroduce foods later if the first introduction causes problems?

The food issue is still one of the hardest for me. We know of many foods that cause problems for E when she is in a flare, but she seems to be fine with them now. I worry, like some of the other posters on this thread, that some of those foods may be causing inflammation, but without symptoms it's hard to know.

Most of the diets that people use with Crohn's (such as the SCD and IBD-AID) seem to have phases, where the later phases included foods that are not good when you're flaring, but can be eaten without problems with you're not in a flare. It makes sense to me that this might be the case, but it makes it hard to figure out what foods are safe, and when.
 
Any foods that "fail" the first time
Are pulled
After at least a week reintroduced in a lower fat form
If the reaction is the same as the first time it's put on the "fail list"
If the reaction is questionable it's put on a maybe list and tried a third time
Only the one new food changes each day
The baseline ok foods ( variants of them ) are everyday until a full diet or not trailing a new food
Ds has a very strong allergic history including foods
So for him it's not an ibd diet sorta thing but a possible intolerance /Gi allergy to that food sorta thing
The crohns exclusive diet doesn't permit fillers processed food starches etc.,,
So not a phase sorta thing
 
So are his symptoms a result of him having and allergic history and a gi allergy or a result of his IBD not being in remission? Sorry for all the questions!
 
On paper he does not have any signs of active disease at all
But still had a lot of symptoms
Theory was something was irritating his Gi tract ( crohns allergy etc - no one is sure )
So as a last ditch effort Gi suggested the new diet since it calms the gut and induces remission for difficult crohns cases
But since Ds is so sensitive on so many fronts Gi and I decided to just add one food at a time to build Ds a new diet as opposed to doing this for a few weeks
And now that the Gi has seen how well it's working
He wants him to really stay on it
I can't say if it crohns that caused the issues
Irritating Gi intolerance similar to allergy or something else
That said the Gi was very specific that it needed to be a diet that has been proven to induce remission for crohns and not just a free of xyz diet .
 
No link
Just originally restrictions but you are permitted additionally
All fruits/veggies/nuts plus 200g of whole wheat bread

That's it
No dairy no other meat ( chicken/fish any day plus red lean meat once a week)
No canned /frozen food no emulsifiers no yeast -all fresh
No additives and no packaged food
So basically everything from scratch
 
What about yeast to make the whole wheat bread?

If you are going to IBD-AID now are you including the yogurt/kefir/lactose free cheese or omitting that altogether?

We're starting CDED tomorrow for 6 weeks. She is willing to do it after a discussion. Not sure where to go from there but I hope to see some results. Dr. Baldassano talked about testing this diet with 80-90% EN. (not our GI but I watched a presentation).

We are supposed to be on 70/30 EN and I am going to try to move her up to 80% while we try this. Did you stay at 80/20 for the 6 weeks? Did you move percentage down at any point?

She is up to weekly Humira and I really want something to kick in. Humira isn't reactivating yet (it's only been a week on expanded dose, I know). Anyway -NOT to derail the thread. Just curious about more details on your little rooster.
 
He is probably 80/20 or 90/10
For at least 6 weeks
He had 6 shakes ( 1500) plus
Watermelon /cantaloupe -single potato -two eggs -tomato

Sometimes 7 shakes

The only thing from ibd aid diet was turkey
He didn't like the hard lactose free sprinkle of extra sharp cheddar cheese
So avoiding for now

Yeast - just yeast in homemade bread but
I think 200 g is only one slice a day

He hasn't passed bread yet

Our Gi has him only trying one new food a day
So including veggies this takes a long time

Ds new favorite
Guacamole recipe to dip his favorite plain potato chips in ( he is allowed 10 chips once a week)
Avocado
Onions
Tomatos
Garlic
Lemon juice
Salt pepper


We found out Ds was allergic to fish on this diet so that was why the Gi allowed us to add salmon
He said it was important not to mix diets
 
Zucchini makes wonderful noodles
For a spaghetti like dish
And slice thin for lasagna noodles

Eggplant has a meat like taste according to Ds
 
One last thing
Having him pick the recipes we try has gone a long way to keeping him happy
We look at food network online to figure out what looks good to him
Then trial the ingredients for the week one at a time
With the actual recipe at the end
 
OK, so not mixing diets. I wonder why? For research purposes or for particular action of the diet?

CDED are you worried about calcium intake. I know we have a lot more to worry about with our kids, but just wondering if you are supplementing or had advice about that.

Good idea about him choosing the recipes. He might be a good cook one day, thinking about food at such a young age in this way.
 
He drinks peptamen jr (6-7) a days and later once we get a full diet will have 3 a day which has calcium . He was on 2-3 a day for years.

As far as mixing diet
Each diet has its reason for adding or pulling certain foods and the interactions between those foods
So adding extra stuff could offset the gut balance that was achieved on each diet alone.
Since ibd-aid doesn't allow any wheat at all and different fats and oils - no restriction on yeast as far as I know
Than cded which limits fats specifically to two oils and limited bread
The funny thing is Ds was craving cheese but once I gave him a sprinkle of the allowed cheese on the ibd aid -he lost his taste for it- it has been three months without any dairy except the peptamen jr
The guacamole on the other hand he adored
His taste buds are changing and certain foods are now having different tastes
Which is a good thing
Ds has always cooked in the kitchen since age 4
Food allergies has made that a necessity
He can baked bread /bagels etc from scratch
 
It is very encouraging to hear that his taste buds are adapting. Thanks for answering all my questions. It all makes sense.
 
For sure your taste buds change and it could be as fast as one week for some.

On the calcium note... Many vegetarians and vegans get plenty of calcium. I don't have it handy but our RD gave me a paper that said animal products interfere with the absorption of calcium so if you take those out of the diet the theory is you need less. We still aim for the 1200 for o as she has osteopenia. There are many veggies with excellent calcium and when you can eat them lots of seeds also. We grind d up chia in smoothies daily. The seeds are also a good source of protein and some are a good source of omega 3's!
 

my little penguin

Moderator
Staff member
Just to update
Ds is still adding foods very slowly

Good list
Zucchini
Eggs
Eggplant
Butternut squash
Green onions
Onions ( small amounts /leeks)
Tomatoes
Salmon
Bananas
Apples ( cooked )
Blueberries
Peanut butter ( no salt or sugar )
Almonds pecans macademia cashew pistachio nuts
Watermelon
Cantaloupe
Rice
Honey
Rice noodles ( white rice only)
Potatoes
Sweet potatoes
Quinoa
Pumpkin
Strawberries
Raspberries
Peaches
Boysenberries
Herbal tea

Maybe list
Beef
Wheat
Coconut

Lots of failed food
Chicken is the biggest



But he has a cake now - angel food cake ( eggs rice flour honey )
Simple ingredients not truly cake but add berries and it's good

I think the key thing to all of this is to find a good the kid wants
Work through the ingredient list until you get said food
Potato pancakes is one of those things

Muffins are another example

Eating out is possible if your talk to the manager or chef

Going to have a bread ( without yeast and gluten or too much fiber soon)
Very tricky chemistry experiment
 

my little penguin

Moderator
Staff member
Ds has also gained 4.5 lbs while on the diet and starting to grow
His weight kept dropping prior to this and growth rates were slowing as well .

Originally 50 lbs at dx and now 96.5 lbs .
He was barely able to keep his weight to 90 lbs for the longest time
So I would say despite how hard it is for Ds
The diet plus meds are working right now
 
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