Re: Bowel Disease (very long)

[Guest guest]

Forgot to add that the chiro/nutritionist did some tests of his own and he

had moderate toxic bowel symptoms (yeast, bad bacteria, etc) and moderate

oxidative stress and a ph of 7.

Not sure if that helps any or not. I can lay out his supplement program for

anyone who's interested - it's quite a list.

Thanks again.

Alese

[Guest guest]

Alese wrote:

>

> 1) What is this? What is doing this to him? I've been searching for

> almost 2 years in vain to find out what could be doing this to him and I've

> come up with nothing.

>

> 2) How could this happen in a child so young? What causes this kind

> of catastrophic damage?

>

> 3) Can it be healed? If so, how? If not, what then?

>

I know I sound like a broken record, but has he been tested for the IgA

allergies? His case sounds exactly like a number of the kids on the

celiac list. The problem is, just " avoiding wheat " doesn't always cure

them, esp. if other people in the house are eating the stuff. It gets in

the oven, the sugar, everything. But the antibodies produced when the

kid is exposed take weeks to go away, and they attack the body's enzyme

producing mechanisms. Also, there can be several triggers and without

testing, it's all guesswork. He may be allergic to rice, in the rice

cereal, but also sometimes rice cereal contains traces of wheat gluten.

As for happening young ... that part is common. Sometimes it hits the

kids from the gluten in the Mom's breastmilk.

As for healing ... you are probably on the right track with the enzymes.

But unless you know what the allergen(s) is(are) the kid won't

necessarily heal. Some kids require heavy duty enzymes for a few years,

sometimes for life. He could also have a natural lack of ability to

digest some food or another. He could be reacting to egg albumin or

yeast. You really need someone who will do the necessary tests (though

you can get the IgA and IgG tests done yourself). Some kids have odd

things though, like fructose intolerance or inability to digest some

other simple sugar, and those things are hard to sort out.

Also, once the gut is messed up, it takes a long time to get it right

sometimes. Pepto Bismol seems like a quick and dirty strategy that helps

a lot of people (gets rid of the bad bacteria: for adults the test was 8

pills a day, I think, for a couple of weeks ... but not everyone gets

along with PB either). Kefir has been amazingly helpful to a lot of

people (me included). One lady I met didn't get well until she started

Butyrate enemas, of all things. But until you find the root cause, the

healing part doesn't work. Sounds like you are on the right track though.

BTW ... it is COMMON for folks to get MORE allergies when they start to

heal from a basic IgA allergy like gluten/casein. The reason seems to be

that as the immune system heals, it has more energy and the depleted IgE

and IgG systems come " back online " . Usually said people have been

producing way too much cortisol too, and when they go GF/CF they

suddenly get inflammations, because the body has " gotten used to " too

much cortisol.

As for digestible foods ... when my ds was having digestion problems I

did use the canned formulas for some time, until he got diarrhea from

them too. Then I switched to coconut oil and plain cooked rice, blended

in the blender. MCT (a fraction of CO) is even more digestible. I also

fed him a lot of kefir (he's not casein sensitive). He went from being

in the 0th percentile, weight wise, to right in the middle (50th). The

kefir actually does have a fair amount of digestive enzymes in it: the

bacteria produce them.

-- Heidi Jean

[Guest guest]

Unfortunately this is one of the core issues we've been dealing with. I've

talked to a lot of people about my son and every person I talk to has a

different opinion about what could be causing this. The " doctors " say

there's nothing wrong with him and that he just has an immature digestive

tract. They refuse to test him further than they already have tested him.

This is brought us to see a chiropractor/nutritionist to see if HE can find

what's wrong and treat it. As you may suspect, our insurance doesn't cover

this and we have currently spent thousands of dollars on testing between him

and our autistic son in search of metabolic issues that are correctable. We

certainly did get our money worth as the tests provided valuable

information, especially for our autistic son. He is well on his way to

recovery due to intensive nutritional therapy and dietary intervention (he

as very much the dietary requirements as his younger brother, only he has

autism and the baby doesn't - baby's also not vaccinated, but that's a

different topic). The nutritional supplements are making worlds upon worlds

of difference with him.

We've been advised to test for problem after problem after problem and

unfortunately none of it is covered under insurance and our family would be

crushed financially if we pursued every test that was ever recommended. Our

chiro said himself that we could easily spend $10k on testing and he said he

couldn't do that to us. We struggle to pay for the care that the

conventional doctors refuse to provide as it is. So, we are left to fumble

around in the dark looking for something that works. We've been referred to

just about every government help program in existence, but we don't qualify

for them due to income (believe it or not, my husband makes quite a bit of

money, but we've sunk it all into medical expenses between the two boys and

at this point only our autistic son qualifies for help based on disability -

our youngest doesn't even have a diagnosis yet in spite of all his problems

and therefore doesn't qualify for services of any kind).

I truly appreciate the responses I got and I will research each and every

idea. I'm sure you all understand though the caution we must proceed with

both concerning the health of our kids and the health of our finances.

Thanks again.

Alese

_____

[Guest guest]

Wow, I dont have any advice for you. I wanted to say, though, that I

am also eagerly awaiting the responses you do get.

This story could have been written by me. Everything, down to his

name!! Mine is Aidan as well Mine is also a bit older, we are at

33 months. He just began attempting to speak about 3 months ago,

still not whole words that everyone understands, but thank goodness

it finally started. We have made a million changes & after many we

see significant improvement in his bowel movements, only for it to

return a few days later.

Oh, yes, one other difference... my Aidan actually had positive

allergy tests. His first was egg white, which I removed from my diet

ASAP & saw improvement, a month later he started again & the allergy

test showed severe cows' whey allergy, and on & on.... His allergy

tests now show only a cows milk whey allergy, but we still see

negatvie bowel reactions to many of the same things you listed.

We are now to the point we avoid almost exactly what you do with

yours. I am so looking forward to the answers you get.

BTW, Aidan's projectile vomiting began at 3 days of age, so I assume

he was born in this condition. When did yours start & how was your

pregnancy? (if you dont mind me being nosy!)

We recently started giving him the coconut milk tonic in EFLF & he

was doing awesome on it & finally starting to put on a little

weight, now we are back to square 1. After that last post on

guar gum I am wondering if this is not good for him.

Wishing you the best & some life-saving answers for us both!

> I'm reading the posts on probiotics/FOS and I'm finding all of this

> fascinating.

>

>

>

> I have a curiosity question if anyone is up to the challenge of

answering

> it. We've been searching for about 2 years now with little

success.

>

>

>

> My 21 month old son has some sort of severe bowel issue(s). At

two weeks of

> age, we brought him to the ER for bloody diarrhea where they did a

battery

> of tests and found nothing. At that time they surmised it was a

milk/soy

> allergy and that I should stop breastfeeding (don't get me started

on what a

> big mistake that was) and put him on Nutramigen (formula that has

> " pre-digested " proteins). Around the same time, it became obvious

that he

> had another issue going on as he was projectile vomiting several

times a

> day. At 2 months, he had a barium study to check for reflux which

came back

> negative. The entire time since his visit to the ER, Aidan has

very mucousy

> stools - in fact they were more mucus than they were fecal matter

and we

> could never figure out why they were like that. Aidan eventually

failed on

> Nutramigen and was put on Neocate (formula broken down into

individual amino

> acids). He seemed to do well on it, his reflux was the same as it

always

> had been despite medication (which I eventually too him off of due

to

> ineffectiveness). His stools were green on Neocate, but the mucus

and blood

> seemed to decrease considerably.

>

>

>

> Fast forward to 4 months of age when he it was surmised by a

pediatric GI

> that he probably did have reflux after all and we were advised to

get him on

> solids as soon as possible. So, we started him on rice cereal at

the

> recommendation of the GI. Within 5 hours, Aidan had mucus and

blood in his

> stool and was projectile vomiting again. We pulled the rice

cereal and

> decided to wait a month and try again. Same story happened at 5,

6 and 7

> months.

>

>

>

> Over the last few months, the doctors had performed many tests.

Occult

> blood fecal tests (positive for blood 4x in a row), tests for bad

bacteria

> (all negative), and a battery of blood tests (only thing abnormal

was IgE or

> IgA - I forget - level at 21 but doc said they didn't worry about

it until

> it was in 1000's). On my own, on a hunch, I decided to try adding

digestive

> enzymes to his diet and amazingly it seemed to work. All of a

sudden he

> could tolerate rice cereal and applesauce without having mucus or

blood in

> his stool or vomiting. Of course, then he had oral issues and a

very

> trippy gag reflex.

>

>

>

> At 12 months I was able to back him off Neocate onto Nutramigen and

> eventually onto soy formula as long as I used the digestive

enzymes. If I

> forgot the enzymes for just one meal, everything came rushing back

within

> 4-5 hours.

>

>

>

> Fast forward to the age of 14 months when we started my autistic

son on the

> gluten free/casein free diet. For simplicity sake, we put Aidan

on the diet

> as well. After a month on the diet, we noticed that his reflux

spitups had

> decreased considerably and after just a couple months on the diet,

we

> noticed that the reflux was completely under control. However, if

he

> consumed gluten or casein, everything came rushing back -

vomiting, mucus

> and bloody diarrhea.

>

>

>

> Over the last several months, we've watch food after food

disappear from his

> diet. At this point he cannot eat gluten, casein, soy, vinegar,

tomatoes,

> potatoes, grains of any kind (rice, quinoa, etc.) and tree nuts.

We tried

> the SCD diet but he became intolerant to the nuts the diet is

based on and

> he couldn't have the dairy products. He's existing on a diet of

eggs

> (organic/free range), organic fruits and vegetables and fresh

meats. He

> cannot have any raw foods - all fruits and vegetables need to be

cooked and

> pureed otherwise he will have undigested food in his stool despite

still

> giving him enzymes. If he eats any of the above foods he will get

his

> reflux back, mucus and blood in stool and on occasion he will

literally get

> burned (chemically) by his stool - he's gotten 2nd degree chemical

burns on

> the insides of this thighs on a few different occasions.

>

>

>

> He's currently under the care of a chiropractor/nutritionist and

is on an

> intense supplement program. After watching food after food drop

out of his

> diet, we decided to take a different approach to his healing

because at this

> point it's clear that he cannot tolerate food in general. However

some

> foods just don't affect him like others do.

>

>

>

> OK, so now that you know the history here are my questions:

>

>

>

> 1) What is this? What is doing this to him? I've been

searching for

> almost 2 years in vain to find out what could be doing this to him

and I've

> come up with nothing.

>

> 2) How could this happen in a child so young? What causes

this kind

> of catastrophic damage?

>

> 3) Can it be healed? If so, how? If not, what then?

>

>

>

> We are working everyday to try to help him and it seems that

nothing is

> working and we are continuing to lose foods. I have nightmares of

him with

> a stomach tube or on TPN or worse because his body just isn't

working.

>

>

>

> This child is also developmentally delayed and speech delayed. He

has not

> said his first word and is using speech language to communicate.

He stopped

> growing at one point, but I think with him basically being on baby

food and

> enzymes, we've finally gotten his body to take up some nutrients

and use

> them. He was born in the 90th percentile for height and 95th for

weight.

> Now he's in the 95th percentile for height and 25th percentile for

weight

> which has dropped from the 75th percentile over the last few

months.

>

>

>

> Any light you can shed on this would be most appreciated.

>

>

>

> Thanks in advance

>

>

>

> Alese

>

>

>

>

[Guest guest]

Hi ,

> We recently started giving him the coconut milk tonic in EFLF & he

> was doing awesome on it & finally starting to put on a little

> weight, now we are back to square 1. After that last post on

> guar gum I am wondering if this is not good for him.

>

Guar gum, brrrrrr. Why not try some coconut milk without all that stuff? That

way, you

can see if it is a problem with the coconut milk or just all the additives.

Here is where we

get our coconut milk:

http://www.wildernessfamilynaturals.com/mall/pure_and_naturals_coconut_milk_f.AS\

P

HTH,

'

[Guest guest]

mmmmm, I've been dreaming of trying it!! I'm a SAHM & my DH is

currently seeking a new job, so its waiting until that pulls

through!! I figure the coconut milk w/ guar gum is better than

the icky rice milk I was making him for now.

Hoping to try it soon, thanks for the recommendation!

>

> Hi ,

>

> > We recently started giving him the coconut milk tonic in EFLF &

he

> > was doing awesome on it & finally starting to put on a little

> > weight, now we are back to square 1. After that last post

on

> > guar gum I am wondering if this is not good for him.

> >

>

> Guar gum, brrrrrr. Why not try some coconut milk without all that

stuff? That way, you

> can see if it is a problem with the coconut milk or just all the

additives. Here is where we

> get our coconut milk:

>

>

http://www.wildernessfamilynaturals.com/mall/pure_and_naturals_coconu

t_milk_f.ASP

>

> HTH,

> '

[Guest guest]

<<<<I had

pre-eclampsia with both pregnancies very badly. It never progressed

to

full-blown eclampsia.>>>>

hmmmm, interesting... I had severe pre-eclampsia with my first (not

the same child, but I wonder if the tendency has some correlation?)

I also conceived him 10 weeks post-partum and lost weight up until

my 5th month of pregnancy, so I was not in optimal health at all

(pre-NT days too). I wonder if that had something to do with it,

more like I know I suppose...

Ok, never heard of coconut milk tonic in EFLF, can you explain that

further

> to me, please? I'm up for giving anything a try.

>

I dont have the book right it front of me, so someone else might

wanna jump in here to correct me if need be. I make it this way from

memory, but think their is something I do not use, like vanilla

maybe.

1 can coconut milk

2 1/4 cups water

2 tbsp maple syrup (grade

1 tsp dolomite (for calcium)

heat gently over med. low heat until dolomite fully dissolved. I

just toss it in the fridge & the kids drink this in place of cows

milk. Sally says its a good sub for people who cannot get raw milk

or who are allergic, so I figure it might be good for em?? Its alot

less work than the rice milk I was making & seems much healthier to

me. I'd give up milk all together, but my son would not have it...

he is addicted!

I was told Aidan was " probably autistic " at 22 months. We chose not

to have him evaluated & went to a naturopath instead. Did

biomedical, nutritional and things really turned around for us thank

goodness. He went from no interaction with anyone and no receptive

language at all to a nearly normal (still somewhat language delayed)

33 month old. The stories sound so familiar, I wonder why all these

things seem to be running together?

I'm looking forward to having a third child after a few years of NT

& wondering if it will be completely different this time around.

Hoping!

I wish you all the best & peace in your journey!

>

>

>

>

> _____

>

> From: [mailto:sturnwald@h...]

> Sent: Thursday, February 10, 2005 2:05 PM

>

> Subject: Re: Bowel Disease (very long)

>

>

>

>

> Good to meet you !

>

>

>

>

>

> >Oh, yes, one other difference... my Aidan actually had positive

> >allergy tests. His first was egg white, which I removed from my

diet

> >ASAP & saw improvement, a month later he started again & the

allergy

> >test showed severe cows' whey allergy, and on & on.... His

allergy

> >tests now show only a cows milk whey allergy, but we still see

> >negatvie bowel reactions to many of the same things you listed.

>

>

>

> That's the problem we have too. We continue to lose foods - one

right after

> the other.

>

>

>

> >We are now to the point we avoid almost exactly what you do with

> >yours. I am so looking forward to the answers you get.

>

>

>

> Maybe we can swap recipes

>

>

>

> >BTW, Aidan's projectile vomiting began at 3 days of age, so I

assume

> >he was born in this condition. When did yours start & how was

your

> >pregnancy? (if you dont mind me being nosy!)

>

>

>

> Aidan was in the ER at two weeks of age with bloody diarrhea. I

cannot

> remember when the projectile vomiting started but it was well

underway by

> the time he went into the ER. Yes, I do believe he was born with

his

> condition. My pregnancy seemed alright. I was miserable as I

usually am

> during pregnancy, but it went much smoother than my older son. I

had

> pre-eclampsia with both pregnancies very badly. It never

progressed to

> full-blown eclampsia.

>

>

>

> >We recently started giving him the coconut milk tonic in EFLF &

he

> >was doing awesome on it & finally starting to put on a little

>

>

>

> Ok, never heard of coconut milk tonic in EFLF, can you explain

that further

> to me, please? I'm up for giving anything a try.

>

>

>

> Alese

>

>

>

>

>

>

>

>

[Guest guest]

Hello,

I read a really good book by Karyn Seroussi called Unraveling

the Mystery of Autism and Pervasive Developmental Disorder.

Her son developed autism after a round of vaccinations and with

physical therapy, diet changes (elimination of milk among

others) her son was tested as normal at the age of 5 or 6 (when

entering school). It was a really interesting book. She has a

web site at http://www.autismndi.com/ and gives help and

support about the dietary changes for those with children with

Autism.

Louise

[Guest guest]

I relate to the part about eliminating foods. I am diagnosed celiac

2 1/2 years. During that time and right before for a few years, I

ate NT style. About a year after being diagnosed celiac, I started

slowly having problems with eating GF, to the point of eliminating

foods. Oct 04, I lost my kefir grains and from there went down hill

fast! January 05 my digestion shut down and there was nothing I

could eat without severe pain! Within a month I was tested for food

allergies and was found to be allergic to almost all the food I had

been eating! Grass-fed beef, chicken, eggs, dairy, kefir, yogurt,

pork, corn, sauerkraut,all nuts and seeds,garlic, all oils except

olive oil, ACV,celery, mustard, pears, honey, tomatos, potatos,

peppers, molasses, yeast, soy (wasn't eating that anyway),gums (the

kind you add with GF flours,almost all the different fillers,

additives put in foods, and olives. That's not all but that's

enough. I am trying very hard to rotate the foods I can eat because

I can cause myself to be allergic to them if I eat them over and

over. 4-day rotation is best. To this day I am still not sure how

this happened! So far all testing is coming back normal. All testing

is not in yet. I tried the SCDiet and could not do it. I am trying

the IBS diet now. That's not working. I am looking into N.A.E.T., an

allergy elimination program.I have contacted a few chiropractors

that do this.

Anyway, being tested by an allergist for food allergies should help

you. and then a rotation diet with the foods you CAN eat.

Blessings to you,

Del

[Guest guest]

Hi Heidi,

Thanks for your concern. It has been rough. I have lost some weight

but beginning to eat again (only not the good foods that I am used

to) and so I think I am starting to gain it back. I just need to get

some strength back.

I think I should not have lost my kefiili grains! At least the

kefiili was keeping my gut in good bacteria. This probably would not

have ever happened if I had not lost the grains. If not that that I

too, am at a lost as to how it happened!

Does it sound like something more than leaky gut to you? I am

interested in hearing any opinions you have.

I will look into the Alpha Nutrition program. Never heard of it.

Thanks,

Del

> Oh Del, I'm sorry to hear about all that! From what I've read, the

IgG

> allergies happen because of " leaky gut " , and you can get them

> to just about anything that gets into your blood. But the question

> is, why would your gut not be in good shape?

>

> The Alpha Nutrition program is allergen free, and some folks

> use that, but seems like something else is going on.

>

>

> Heidi Jean

[Guest guest]

This probably would not

> >have ever happened if I had not lost the grains.

> Well shoot, THAT is something I can fix! Do you want me to send

more?

> I just mailed off a batch, if they survive I can mail off more.

----I would like to get more. I was on the list. I didn't say

anything because I didn't want to bug you and then all this happened

and my attention has been on this! I ordered some kefir grains and

made kefir but I reacted to it with a very unhappy tummy. Same with

the 24 hour dripped yogurt that I made with half raw cream and half

raw milk. So I guess I won't know if I will react to kefiili until I

get some!

> >Does it sound like something more than leaky gut to you? I am

> >interested in hearing any opinions you have.

> I don't know ... it seems for ME that I DO have to rely on a lot

> of probiotics to keep an even keel, so to speak. Lately that

> means kefir beer. But Dom is experimenting with kefir

suppositories (oh,

> I know!). It seems that that bacteria in kefir might make the cells

> in the gut wall less permeable, they provoke the cells into growing

> faster (I just skimmed the article, so don't take this

definitively).

---Maybe I would need to just keep eating the kefiili a little at a

time until I adjust to it and the pain goes away. Do all celiacs

also have leaky gut or can it develope into leaky gut?

Hearing

> you say that about the kefir on the same day was just too

coincidental.

> Some folks with autistic kids feed the kids the GRAINS (because

they

> are casein intolerant) and it works. Gotta be a zonulin thing.

----Interesting about the kids eating the grains!

Del