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07-05-2015, 02:54 PM   #31
Mr chicken
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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 eggsotatoes: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 ....
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DS dx at age 7 Crohns
Humira 40 mg every 10 days
Mtx 12.5 mg -due to juvenile spondyloarthritis associated inflammatory bowel disease

Vsl#3ds iron Zantac folic acid


Aka MLP....
07-05-2015, 03:09 PM   #32
Pilgrim
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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?
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Mom to daughter,age 5, diagnosed at age 3 with Crohn's Disease
Current Treatment: Humira (started 12/2014) moved to weekly injections (07/2015), Back to 50% EN orally. Zinc supplements. Calprotectin through the roof.
Previous Treatment: Azathioprine (discontiued 09/14 due to Pancreatitis) Flagyl, Sulfasalazine, EEN, Iron,Vit D, Zinc, SCD
07-05-2015, 03:25 PM   #33
Mr chicken
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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
07-05-2015, 03:35 PM   #34
Mr chicken
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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/arti...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
07-05-2015, 03:47 PM   #35
Pilgrim
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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.
07-06-2015, 04:33 PM   #36
kimmidwife
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Hope his GI visit went well and you were able to figure some things out.
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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.
07-06-2015, 06:00 PM   #37
Pilgrim
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Also thinking of you and the GI visit today.
07-06-2015, 06:31 PM   #38
Mr chicken
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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
07-06-2015, 06:43 PM   #39
Clash
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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?
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C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
07-06-2015, 06:54 PM   #40
Mr chicken
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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
07-06-2015, 08:09 PM   #41
Clash
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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.
07-06-2015, 08:16 PM   #42
Mr chicken
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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 .
07-06-2015, 08:58 PM   #43
Clash
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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.
07-06-2015, 09:18 PM   #44
Mr chicken
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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
07-07-2015, 02:26 PM   #45
pdx
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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.
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Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (currently on 9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (15 mg weekly)
vitamin D, folic acid, multivitamin, Prozac

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Topical clobetasol for Remicade-induced psoriasis
07-07-2015, 06:12 PM   #46
Mr chicken
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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
07-07-2015, 06:39 PM   #47
Clash
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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!
07-07-2015, 07:20 PM   #48
Mr chicken
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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 .
07-17-2015, 10:18 PM   #49
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Still trying to find the CDED for weeks 6-12 online. Do you happen to have a link?
07-18-2015, 05:45 AM   #50
Mr chicken
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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
07-18-2015, 08:24 PM   #51
Pilgrim
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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.
07-18-2015, 08:35 PM   #52
Mr chicken
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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
07-18-2015, 08:36 PM   #53
Mr chicken
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Zucchini makes wonderful noodles
For a spaghetti like dish
And slice thin for lasagna noodles

Eggplant has a meat like taste according to Ds
07-18-2015, 08:38 PM   #54
Mr chicken
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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
07-19-2015, 09:01 AM   #55
Pilgrim
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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.
07-19-2015, 09:44 AM   #56
Mr chicken
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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
07-19-2015, 08:43 PM   #57
Pilgrim
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It is very encouraging to hear that his taste buds are adapting. Thanks for answering all my questions. It all makes sense.
07-20-2015, 05:17 AM   #58
crohnsinct
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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!
09-05-2015, 10:46 AM   #59
my little penguin
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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
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09-05-2015, 10:51 AM   #60
my little penguin
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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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