5 yo son has soem form of colitis with Rectal B.

[Guest guest]

Hi All,

I just joined this group. Name's , and i am from Australia.

I hope the diet is working for you guys, and enjoying life.

I would like to hear from people who are living with this.

My son is now 5.5yo. When he was 2yo he had rectal bleeding. He was getting 1-2

small streaks of blood every fortnight or so. After 6 months we did a

colonoscopy in 2007.

My son is allergic to dairy, nuts. Pediatric Gast. did see some ulcers in colon,

as well as a high number of eosinophils, so he concluded it could be either

a) UC, or Allergic Colitis.

Either way, treatment is either use 5ASA, steroids, or do a complete elimination

diet starting from basic nutrition.

Since my little one wasn't hurting, we decided to do neither and not put him

through all that. Instead we tried SCD for 1 month in 2007, and then went back

to normal diet. Bleeding was on and off in 2008, maybe about 30 isolated

incident, and in 2009 maybe 1-2 times.

However Rect.Bleed. has come back the last 2 months so we are due for

colonoscopy again in 1 month.

We are on SCD again for a month while waiting for colonoscopy and seeing some

improvement but don't know if it's because of that or just the nature of IBD (as

dr's claim).

I have millions of questions, but here are a few i would be grateful if someone

tries to answer anywhere in the world. We live in australia, melbourne.

1. For IBD, is it common for patients to only experience rectal bleeding, and

nothing else. Apart from soem very mild stomach pain, he has not had any other

symptoms, no fever, no weight loss, virtually asymptomatic apart from painless

rectal bleeding.

2. If it is possible to have painless rectal bleeding in IBD, does that mean

it's defined as mild IBD?

3. I am wary of starting 5ASA's or Steroids for my son. Should we be to clear

the symptoms completely, or should we tolerate a small amount of Rectal bleeding

a few times a year.

4. For anyone interested more i have a complete document with all his tests and

results etc, which i can supply.

5. If it turns out allergic colitis is enteral diets the only way forward and

giving one food at a time. It sounds very extreme.

6. And finally, i have found one disease called dissacharide intolerance. Is it

possible that SCD cures all the people which have been misdiagnosed as IBD, but

actually have dissacharide intolerance, and that is why it doesnt work for

everybody?

Hope my long post dont scare off answers, but it's the smallest summary i could

do.

Thank you and good health.

Regards .

[Guest guest]

Hi ,

It's horrible to watch your child go through this. Adding to the confusion is

that you do not have a definite cause, so the idea of medication or enteral diet

is even more difficult. Adding to the confusion is the variable, but similar,

symptoms in many GI problems.

Hopefully the next colonoscopy will give you more information.

The principle behind SCD is that all damaged guts- from a variety of causes, are

intolerant to certain sugars- disaccharides, lactose, gluten.

There is a site pecanbread.com for children on SCD. The SCD diet for children

with autism spectrum disorders is casein- dairy free. SCD for GI disorders does

not eliminate all dairy products- allows certain cheese, butter, and 24 hr

fermented yogurt. There is also a list serve for pecan bread for parents that

you may find helpful.

Which foods to add or eliminate are personal. Keeping a food diary, and adding

foods very slowly helps.

Hope he feels better,

PJ

>

> Hi All,

>

> I just joined this group. Name's , and i am from Australia.

>

> I hope the diet is working for you guys, and enjoying life.

>

> I would like to hear from people who are living with this.

>

> My son is now 5.5yo. When he was 2yo he had rectal bleeding. He was getting

1-2 small streaks of blood every fortnight or so. After 6 months we did a

colonoscopy in 2007.

>

> My son is allergic to dairy, nuts. Pediatric Gast. did see some ulcers in

colon, as well as a high number of eosinophils, so he concluded it could be

either

>

> a) UC, or Allergic Colitis.

>

> Either way, treatment is either use 5ASA, steroids, or do a complete

elimination diet starting from basic nutrition.

>

> Since my little one wasn't hurting, we decided to do neither and not put him

through all that. Instead we tried SCD for 1 month in 2007, and then went back

to normal diet. Bleeding was on and off in 2008, maybe about 30 isolated

incident, and in 2009 maybe 1-2 times.

>

> However Rect.Bleed. has come back the last 2 months so we are due for

colonoscopy again in 1 month.

>

> We are on SCD again for a month while waiting for colonoscopy and seeing some

improvement but don't know if it's because of that or just the nature of IBD (as

dr's claim).

>

> I have millions of questions, but here are a few i would be grateful if

someone tries to answer anywhere in the world. We live in australia, melbourne.

>

> 1. For IBD, is it common for patients to only experience rectal bleeding, and

nothing else. Apart from soem very mild stomach pain, he has not had any other

symptoms, no fever, no weight loss, virtually asymptomatic apart from painless

rectal bleeding.

>

> 2. If it is possible to have painless rectal bleeding in IBD, does that mean

it's defined as mild IBD?

>

> 3. I am wary of starting 5ASA's or Steroids for my son. Should we be to clear

the symptoms completely, or should we tolerate a small amount of Rectal bleeding

a few times a year.

>

> 4. For anyone interested more i have a complete document with all his tests

and results etc, which i can supply.

>

> 5. If it turns out allergic colitis is enteral diets the only way forward and

giving one food at a time. It sounds very extreme.

>

> 6. And finally, i have found one disease called dissacharide intolerance. Is

it possible that SCD cures all the people which have been misdiagnosed as IBD,

but actually have dissacharide intolerance, and that is why it doesnt work for

everybody?

>

> Hope my long post dont scare off answers, but it's the smallest summary i

could do.

>

> Thank you and good health.

>

> Regards .

>

[Guest guest]

Jon,

Sorry to hear about your son! Regarding the blood, if it is small amounts and

bright red, then it is coming from a point close to the rectum. The further

blood travels, the darker in color it becomes. Having said that, if there is a

need, the 5ASA in suppository form would be best at it will not affect his

entire body and only where most needed, so I would suggest that if the bleeding

becomes a problem.

>

> 1. For IBD, is it common for patients to only experience rectal bleeding, and

nothing else. Apart from soem very mild stomach pain, he has not had any other

symptoms, no fever, no weight loss, virtually asymptomatic apart from painless

rectal bleeding.

My husband is like that. He won't have any other symptoms but bleeding. But,

the bleeding can be so much that it causes diarrhea.

>

> 2. If it is possible to have painless rectal bleeding in IBD, does that mean

it's defined as mild IBD?

Not necessarily. It depends on the extent of the ulceration.

>

> 3. I am wary of starting 5ASA's or Steroids for my son. Should we be to clear

the symptoms completely, or should we tolerate a small amount of Rectal bleeding

a few times a year.

In my opinion, and I think Elaine's, medication, when appropriate, is very

important. Medication is rarely a cure -- the most notable exception is

antibiotics for bacterial infections. Most of the time, medication only

relieves symptoms, which is good as long as the root of the problem is being

addressed. In this case, I would be using SCD to tackle the root and use the

5ASA's (see my opening comments) and steroids when the symptoms are not

manageable without them. The goal is to be as medication free as possible while

maintaining health. A lot of people are able to eventually manage just fine on

diet alone. I would suggest you also teach your son as he grows how to read his

body signals and symptoms so he too can tackle any problems early.

>

> 5. If it turns out allergic colitis is enteral diets the only way forward and

giving one food at a time. It sounds very extreme.

For a short period it might be helpful, although a lot of those diets (unless

done by IV) contain illegals for SCD. Elaine's intro diet is probably the very

best one can do to accomplish the same goal.

>

> 6. And finally, i have found one disease called dissacharide intolerance. Is

it possible that SCD cures all the people which have been misdiagnosed as IBD,

but actually have dissacharide intolerance, and that is why it doesnt work for

everybody?

>

Disaccharide (and polysaccharide) 'intolerance' is a huge part of Elaine's

theory. The body, for what ever reason, isn't breaking them down properly. The

body can't digest them, so the pathogenic bacteria feed on it and overgrow. No

one really knows why it doesn't work for everybody. My theory is that everyone

is so different that it would take a very SCD knowledeable doctor to help work

through it with difficult patients. Some people just give up because it is

easier. My husband would rather just find a combo that relieves his symptoms

rather than completely healing himself--again because it is easier. This isn't

for the timid, but to be honest, it is probably the best way for everyone to eat

and be healthy.

Amelia

Husband UC 9 years, SCD 18 months

LDN 3mg

[Guest guest]

Jon,

Sorry to hear about your son. It's bad enough if you've got it UC like I do, but it must be terrible to watch someone else with it and not be able to do anything about it.

I'll try to answer your questions based on my experience. If I double up on info already given i'm sorry but I didn't read any of the other replies yet.

1 & 2) I have my worst pain when I don't have any bleeding, and virtually no pain when I have some bleeding. I know i'm going to get bad when I have bad pains for a few days before the flare starts. I believe the cause of this is because when I have solid movements it "scrapes" against the sides and causes pain, possibly flaking off the already damaged walls and resulting in bleeding/flare.

3) If you're not on meds now, you could try starting a low dose of 5ASA and see if that gets rids of the bleeding, Or go right to the steroids (I personally wouldn't go with prednisone, but a cort enema instead as long as it reaches up to the effected area). If you can get off the meds with no reaction then that has to be your decision. I'd start SCD 100% at the same time and see what kind of results you get. I guess you have 3 options here. Starts SCD and see if that helps with no meds, start SCD with steroids and 5asa then ween off them, or start SCD with small dose of 5asa and see hw that goes possibly increasing the dosage.

5) to my knowledge the only way of identifying the foods you can't have is to try them one at a time so you know what's causing the reaction... sucks at first until you find out what you can and can't work with.

6) Since IBD has no cure and nobodyknows for sure what causes it, there is a huge possibility that everyone on here has a different cause. If you look on youtube there is a doctor talking about how one person was misdiagnosed with UC for 30 YEARS!! Only to find out he had a wheat allergy..... Now, without the wheat he is fine. Totally misdiagnosed and i'm sure it happens alot more than we think.

-UC - 1+ yearsSCD - 7 months 100% strict and 4 months restricted diet.Asacol - 5 pills a day

To: BTVC-SCD From: jonniefromoz@...Date: Wed, 20 Jan 2010 02:27:01 +0000Subject: 5 yo son has soem form of colitis with Rectal B.

Hi All, I just joined this group. Name's , and i am from Australia.I hope the diet is working for you guys, and enjoying life.I would like to hear from people who are living with this. My son is now 5.5yo. When he was 2yo he had rectal bleeding. He was getting 1-2 small streaks of blood every fortnight or so. After 6 months we did a colonoscopy in 2007. My son is allergic to dairy, nuts. Pediatric Gast. did see some ulcers in colon, as well as a high number of eosinophils, so he concluded it could be either a) UC, or Allergic Colitis. Either way, treatment is either use 5ASA, steroids, or do a complete elimination diet starting from basic nutrition.Since my little one wasn't hurting, we decided to do neither and not put him through all that. Instead we tried SCD for 1 month in 2007, and then went back to normal diet. Bleeding was on and off in 2008, maybe about 30 isolated incident, and in 2009 maybe 1-2 times. However Rect.Bleed. has come back the last 2 months so we are due for colonoscopy again in 1 month. We are on SCD again for a month while waiting for colonoscopy and seeing some improvement but don't know if it's because of that or just the nature of IBD (as dr's claim). I have millions of questions, but here are a few i would be grateful if someone tries to answer anywhere in the world. We live in australia, melbourne. 1. For IBD, is it common for patients to only experience rectal bleeding, and nothing else. Apart from soem very mild stomach pain, he has not had any other symptoms, no fever, no weight loss, virtually asymptomatic apart from painless rectal bleeding. 2. If it is possible to have painless rectal bleeding in IBD, does that mean it's defined as mild IBD?3. I am wary of starting 5ASA's or Steroids for my son. Should we be to clear the symptoms completely, or should we tolerate a small amount of Rectal bleeding a few times a year. 4. For anyone interested more i have a complete document with all his tests and results etc, which i can supply. 5. If it turns out allergic colitis is enteral diets the only way forward and giving one food at a time. It sounds very extreme. 6. And finally, i have found one disease called dissacharide intolerance. Is it possible that SCD cures all the people which have been misdiagnosed as IBD, but actually have dissacharide intolerance, and that is why it doesnt work for everybody?Hope my long post dont scare off answers, but it's the smallest summary i could do. Thank you and good health. Regards .

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[Guest guest]

> Hi All,

>

> I just joined this group. Name's , and i am from Australia.

>

> I hope the diet is working for you guys, and enjoying life.

>

> I would like to hear from people who are living with this.

>

> My son is now 5.5yo. When he was 2yo he had rectal bleeding. He was getting

1-2 small streaks of blood every fortnight or so. After 6 months we did a

colonoscopy in 2007.

>

> My son is allergic to dairy, nuts. Pediatric Gast. did see some ulcers in

colon, as well as a high number of eosinophils, so he concluded it could be

either

>

> a) UC, or Allergic Colitis.

>

> Either way, treatment is either use 5ASA, steroids, or do a complete

elimination diet starting from basic nutrition.

>

> Since my little one wasn't hurting, we decided to do neither and not put him

through all that. Instead we tried SCD for 1 month in 2007, and then went back

to normal diet. Bleeding was on and off in 2008, maybe about 30 isolated

incident, and in 2009 maybe 1-2 times.

>

> However Rect.Bleed. has come back the last 2 months so we are due for

colonoscopy again in 1 month.

>

> We are on SCD again for a month while waiting for colonoscopy and seeing some

improvement but don't know if it's because of that or just the nature of IBD (as

dr's claim).

>

> I have millions of questions, but here are a few i would be grateful if

someone tries to answer anywhere in the world. We live in australia, melbourne.

>

> 1. For IBD, is it common for patients to only experience rectal bleeding, and

nothing else. Apart from soem very mild stomach pain, he has not had any other

symptoms, no fever, no weight loss, virtually asymptomatic apart from painless

rectal bleeding.

>

> 2. If it is possible to have painless rectal bleeding in IBD, does that mean

it's defined as mild IBD?

>

> 3. I am wary of starting 5ASA's or Steroids for my son. Should we be to clear

the symptoms completely, or should we tolerate a small amount of Rectal bleeding

a few times a year.

>

> 4. For anyone interested more i have a complete document with all his tests

and results etc, which i can supply.

>

> 5. If it turns out allergic colitis is enteral diets the only way forward and

giving one food at a time. It sounds very extreme.

>

> 6. And finally, i have found one disease called dissacharide intolerance. Is

it possible that SCD cures all the people which have been misdiagnosed as IBD,

but actually have dissacharide intolerance, and that is why it doesnt work for

everybody?

Hi ,

One thing that is very effective for healing the intestinal wall for colitis is

giving vitamin E

enemas.

This is not prescribed so you will have to make your own doses from vitamin E

capsules.

You put about a tablespoon of warm water in a small receptacle and pop a bunch

of vitamin E capsules into it. And then you use a child ear bulb thingy (the

official

medical term) to suck up the fluid and deliver it as an enema.

For adults, the dose varies between 4000 and 8000 IUs of vitamin E.

The only thing is I have no clue what would be the proper dose for a young

child.

There is a research study about the effectiveness of this - which I don't have

the URL

for at hand, but am hoping someone reposts it. Or you could search vitamin E

studies

in the archives, but the archives are screwy and things don't always come up.

Here is a pic of the ear bulb thingy:

http://www.google.com/products?client=safari&rls=en&q=ear+bulb+syringe&oe=UTF-8&\

um=1&ie=UTF-8&ei=W4NYS_rhA9TQlAeR3rn8Aw&sa=X&oi=product_result_group&ct=title&re\

snum=1&ved=0CB8QrQQwAA

Ignore the top one, they are very inexpensive and effective in this procedure.

Mara