new with questions

[Guest guest]

I started my 9 y.o. daughter (IBD-indeterminate colitis) on SCD 11-1-07

following a flare after prednisone taper (also on 112.5 mg azathioprine, but

metabolite tests show it is not at a therapeutic dose and her liver enzymes have

been off). The diet is a desperate attempt to keep her off remicade. Her GI

agreed we could give this a try before increasing the azathioprine or starting

remicade, but that we would need to see very dramatic improvements. She has not

had an ongoing good response with any meds (lots of side effect issues); diet

(GF/SF/low casein--goat only); or supplement regimen (including enzymes, and

various probiotics, l-glutamine, fish oil...) to date, nor gone into remission

since diagnosis in May '06. Flipped into horrible flare after auto accident 2-28

this year. Hannah was a very healthy kid until she had strep throat 4-05. She

received two back to back doses of antibiotics--her first medication ever.

Developed reactive arthritis that May, began

having episodes of blood in the stool late summer and steady diarrhea by that

Christmas (not much of a present.) Needless to say the idea of re-balancing the

gut flora makes a lot of sense.

I used only BTVC (our computer was being fixed so didn't have anywhere to go

with questions). Fortunately, I had ordered it and a yogurt maker before the

last round of blood test results. She had a horribly difficult time the first

2+ weeks: severe nausea, lethargy, weight loss, wild emotions, D continuing up

to 13x day. I am now realizing I may have moved too quickly in adding in other

foods in an attempt to stop the weight loss. She has shown great improvements

over the last 1 1/2 wks: D down to 5x/day, bleeding stopped for 2 wks now, less

pain/cramping, sleeping through the night, huge increase in energy--I feel like

I have my Hannah back for the first time since her last prednisone " ride "

(April-September.) She even asked for blue jeans--she hasn't worn them in 2

years because of the difficulty getting them off quickly--that's a big

improvement sign to me! I did add eggs (primarily in recipes--she's not crazy

about eating them) and almond flour muffins in spite

of still having D around the 2 wk mark to try to get some calories in since

Elaine said weight loss should stop when you are eating more of a variety. She

is eating 2-3 muffins/day spread throughout the day along with variety of lean

meats, fish, poultry, goat cheddar, carrots, green beans (small amounts of

minced onion/garlic/celery in soups) smoothies, banana, baked apples/pears or

sauce. I haven't found a way she likes squash yet, and she doesn't care much

for the allowed juice/gelatin (she never really had that before--just drinks

lots of water.)

1) Now that I discovered the helpful stages chart, I'm wondering if I've moved

too fast in this. Will just slowing down/backing up a little allow more healing

or do we need to go back to intro again? With the improvements she's made I

don't want to make this harder than it has to be. She has regained 2 of the 7

lbs she lost, but has a Dr. appt. in 3 weeks. I'd love to see even greater

symptomatic improvements and steady weight before then--maybe back to intro

after the appt.? Any thoughts?

2) Is it okay to add coconut oil to the smoothies or is it a potent enough

antimicrobial that it could undo some of the benefit of the goat yogurt? She is

having 2/day with ripe banana, (canned legal) pineapple, frozen cooked peach

puree. If not okay with coconut oil would flax oil be okay? Could strawberries

also be cooked/pureed frozen to add for flavor variety or is it too early for

them even cooked? Cooked/frozen legal OJ (not in a.m.)?

3) Is natural peanut butter generally tolerated better or worse than almond

flour? On the stages chart it shows nut butters before nut flours but since

peanuts are a legume where do they fit?

4) Should cider be cooked since it is fresh pressed and not a cooked juice?

5) Any other suggestions for boosting calories?

Thank you,

Dawn

Homeschooling mom of 3

Doing SCD since 11-1-07 with 9 y.o. Hannah IBD

[Guest guest]

Welcome to the group Dawn,

>

> I started my 9 y.o. daughter (IBD-indeterminate colitis) on SCD 11-

1-07 following a flare after prednisone taper (also on 112.5 mg

azathioprine, but metabolite tests show it is not at a therapeutic

dose and her liver enzymes have been off). The diet is a desperate

attempt to keep her off remicade. Her GI agreed we could give this a

try before increasing the azathioprine or starting remicade, but that

we would need to see very dramatic improvements. She has not had an

ongoing good response with any meds (lots of side effect issues);

diet (GF/SF/low casein--goat only); or supplement regimen (including

enzymes, and various probiotics, l-glutamine, fish oil...) to date,

nor gone into remission since diagnosis in May '06. Flipped into

horrible flare after auto accident 2-28 this year. Hannah was a

very healthy kid until she had strep throat 4-05. She received two

back to back doses of antibiotics--her first medication ever.

Developed reactive arthritis that May, began

> having episodes of blood in the stool late summer and steady

diarrhea by that Christmas (not much of a present.) Needless to say

the idea of re-balancing the gut flora makes a lot of sense.

>

> I used only BTVC (our computer was being fixed so didn't have

anywhere to go with questions). Fortunately, I had ordered it and a

yogurt maker before the last round of blood test results. She had a

horribly difficult time the first 2+ weeks: severe nausea, lethargy,

weight loss, wild emotions, D continuing up to 13x day. I am now

realizing I may have moved too quickly in adding in other foods in an

attempt to stop the weight loss. She has shown great improvements

over the last 1 1/2 wks: D down to 5x/day, bleeding stopped for 2 wks

now, less pain/cramping, sleeping through the night, huge increase in

energy--I feel like I have my Hannah back for the first time since

her last prednisone " ride " (April-September.) She even asked for

blue jeans--she hasn't worn them in 2 years because of the difficulty

getting them off quickly--that's a big improvement sign to me! I did

add eggs (primarily in recipes--she's not crazy about eating them)

and almond flour muffins in spite

> of still having D around the 2 wk mark to try to get some calories

in since Elaine said weight loss should stop when you are eating

more of a variety. She is eating 2-3 muffins/day spread throughout

the day along with variety of lean meats, fish, poultry, goat

cheddar, carrots, green beans (small amounts of minced

onion/garlic/celery in soups) smoothies, banana, baked apples/pears

or sauce. I haven't found a way she likes squash yet, and she

doesn't care much for the allowed juice/gelatin (she never really had

that before--just drinks lots of water.)

>

> 1) Now that I discovered the helpful stages chart, I'm wondering

if I've moved too fast in this. Will just slowing down/backing up a

little allow more healing or do we need to go back to intro again?

With the improvements she's made I don't want to make this harder

than it has to be. She has regained 2 of the 7 lbs she lost, but has

a Dr. appt. in 3 weeks. I'd love to see even greater symptomatic

improvements and steady weight before then--maybe back to intro after

the appt.? Any thoughts?>>>>

I think if you address the symptoms first the weight gain will

proceed quicker. I was extremely underweight when I started the diet

and it wasn't until I stabilized on the diet that I started absorbing

foods better and putting weight back on. So, if you clear up the

diarrhea faster the weight gain should proceed more quickly. To do

this you could either redo the intro for 1-2 days and then readd

foods or you could take out the hardest to digest foods that she is

eating now. Since you have a timetable to meet ( " we could give this

a try before increasing the azathioprine or starting remicade, but

that we would need to see very dramatic improvements...Dr. appt. in 3

weeks " ) it would be great if you get the diarrhea either reduced

further or gone altogether.

If you want to remove the hardest to digest foods for a few days let

me know and I'll give you an idea what to stop for a few days.

<<<<> 2) Is it okay to add coconut oil to the smoothies or is it a

potent enough antimicrobial that it could undo some of the benefit of

the goat yogurt? >>>

This site says that lauric acid doesn't hurt the good bacteria

http://www.coconut-connections.com/candida.htm

<<<<She is having 2/day with ripe banana, (canned legal) pineapple,

frozen cooked peach puree. If not okay with coconut oil would flax

oil be okay?>>>

Elaine wasn't wild about flax oil. She said that you can use 1/2 of

a prescribed dosage - but that there are better oils.

<<<< Could strawberries also be cooked/pureed frozen to add for

flavor variety or is it too early for them even cooked?>>>

If you try strawberries cook them and run them through a food mill.

I think if she is still having symptoms as above then it is still a

bit early because of the seeds and skins. Cooked apples and pears

(cored and peeled), cooked mango (I use frozen mango) might be better

choices for her.

Cooked/frozen legal OJ (not in a.m.)?>>>>>

The legality of frozen OJ concentrate was changed and it isn't legal

(there may be a typo in the latest reprint?). Tropicana is a legal

brand of OJ. The pure premium, not from concentrate is legal. Don't

use the calcium added or the omega 3 OJ. If symptoms are severe you

may want to remove the pulp (strainer with or without a strainer).

<<<<3) Is natural peanut butter generally tolerated better or worse

than almond flour? On the stages chart it shows nut butters before

nut flours but since peanuts are a legume where do they fit?>>>

Generally natural peanut butter is not tolerated as well as either

almond flour or blanched almond butter. Organic peanut butter (pb)

or Valencia pb may be tolerated better for some than regular natural

pb (less aflatoxins).

<<<> 4) Should cider be cooked since it is fresh pressed and not a

cooked juice?>>>>

It should be pasteurized, if it is not already.

<<<< 5) Any other suggestions for boosting calories?>

> Thank you,

>

> Dawn

> Homeschooling mom of 3

> Doing SCD since 11-1-07 with 9 y.o. Hannah IBD>>>

Sheila, SCD Feb. 2001, UC 23yrs, PCOD 22yrs

mom of and

[Guest guest]

Thank you, Sheila! Right now Hannah is at the healthiest she has been since

diagnosis 18 mos. ago(though still D 4-6x/day and some periods of cramping.)

She has had similar reduction in symptoms at various times, but always temporary

and usually with side effects.

What foods that she is eating would you consider harder to digest and remove and

for how long? With her weight where it is and the GI appt. coming soon I'm not

comfortable with redoing intro right now. This is what she is currently eating.

Chicken, turkey (I did see the posts on the additives in the poultry so am a lot

more cautious now), slow-cooked beef sirloin tip roast, ground beef.

Occasionally (1-2x/wk) scrambled eggs, salmon, goat cheddar, or parmesan (cow).

Goat yogurt in smoothies about 1-1 1/2 c/day.

Bananas, pineapple in its own juice, baked or sauced apples, pears, or peaches

(frozen slices I cook down), sometimes with honey, butter, and cinnamon.

Occasionally a splash of the legal Tropicana in a smoothie.

Well cooked carrots and green beans, trying squashes and pumpkin occasionally.

In soups etc. there are also tiny well cooked pieces of onion, garlic, celery,

basil, thyme, oregano, sea salt, pepper, parsley. Small amounts of SCD ketchup

or marinara from BTVC maybe 1-2x week.

2 muffins with almond flour/day (she would eat more if I would let her--they are

what keeps her feeling like a " normal " person) I added these in after a huge

emotional breakdown at about 2 1/2 weeks into it. I had allowed small amounts

of peanut butter but we talked about it and she understands it will be best to

wait awhile on it.

Coconut and olive oil for cooking, butter, coconut oil in smoothies to boost

calories.

1 Freeda's SCD multi-vitamin; 1000 mg calcium/400 mg vitamin D (appears legal),

1000 mg fish oil, 1000 mg L-glutamine .

Azathioprine 112.5 mg (a crazy high dose for her age/size, she does not

metabolize it normally)

Dawn,

Mom of Hannah IBD 2 yrs., SCD 1 mo.

[Guest guest]

Hi Dawn,

>

> Thank you, Sheila! Right now Hannah is at the healthiest she has

been since diagnosis 18 mos. ago(though still D 4-6x/day and some

periods of cramping.) She has had similar reduction in symptoms at

various times, but always temporary and usually with side effects.

>

> What foods that she is eating would you consider harder to digest

and remove and for how long? With her weight where it is and the GI

appt. coming soon I'm not comfortable with redoing intro right now.

This is what she is currently eating.

>

> Chicken, turkey (I did see the posts on the additives in the

poultry so am a lot more cautious now), slow-cooked beef sirloin tip

roast, ground beef. Occasionally (1-2x/wk) scrambled eggs, salmon,

goat cheddar, or parmesan (cow). Goat yogurt in smoothies about 1-1

1/2 c/day.

>

> Bananas, pineapple in its own juice, baked or sauced apples, pears,

or peaches (frozen slices I cook down), sometimes with honey, butter,

and cinnamon. Occasionally a splash of the legal Tropicana in a

smoothie.>>>>>>

Are you cooking the pineapple or having it raw. If only raw you may

want to cut it out for a few days.

Also try leaving parmesan out for a few days.

<<<<<Well cooked carrots and green beans, trying squashes and pumpkin

occasionally. In soups etc. there are also tiny well cooked pieces

of onion, garlic, celery, basil, thyme, oregano, sea salt, pepper,

parsley. Small amounts of SCD ketchup or marinara from BTVC maybe 1-

2x week. > 2 muffins with almond flour/day (she would eat more if I

would let her--they are what keeps her feeling like a " normal "

person) I added these in after a huge emotional breakdown at about 2

1/2 weeks into it.>>>>>

If she could stop the muffins just for a few days (3-4) she may see

the diarrhea clear up sooner. If you say only 3-4 days she may feel

the difference in that time. Maybe you can make it up by

making " frozen ice cream " with the goat yogurt, honey and bananas.

Also celery is pretty fibrous. Before I was able to tolerate it I

would cook it in soups and stews for the flavour but remove it before

eating.

<<<<< I had allowed small amounts of peanut butter but we talked

about it and she understands it will be best to wait awhile on it.

>

> Coconut and olive oil for cooking, butter, coconut oil in smoothies

to boost calories.

>

> 1 Freeda's SCD multi-vitamin; 1000 mg calcium/400 mg vitamin D

(appears legal), 1000 mg fish oil, 1000 mg L-glutamine .

>

> Azathioprine 112.5 mg (a crazy high dose for her age/size, she

does not metabolize it normally)

>

> Dawn,

> Mom of Hannah IBD 2 yrs., SCD 1 mo.>>>>>

Everything else looks pretty good : )

Sheila, SCD Feb. 2001, UC 23yrs, PCOD 22yrs

mom of and