Newbie

[Guest guest]

Dear TARA

We are a family of five...all on SCD....not all of us had diarrhea or the

symptoms of GI problems yet had ASD, ADD, ADHD problems...it is important to do

the introductory diet to start a good " die off " of all the bad microorganisms in

the intestines. Then my husband and son moved to more advanced foods with not

problem....those in the family with more GI problems/celiac...had to take it

much slower and respect the stages that are talked about on the pecan serve....

Elaine told us for the SCD if followed with " fanatical adherence " can work for

many of us....we discovered that hidden illegals are in everything...check all

that goes into the mouth before you eat it. Juice, syrups, supplements,

vitamins, medication, condiments....everything. It takes a while to get use to

it...but we are reaping the benefits...seeing ASD daughter emerge from her

" cave " ....we are only on day 51...already seeing a miracle and a change in the

entire family.....much better than when we tried GFCF and SF...so much better!

Hang close to this serve they are great at helping you as a " newbie " ...ask

questions...and learn...it is worth it to see your child get better...and in our

case feel better as a parent.

Antoinette (family list of problems, Celiac, leaky gut, multiple sensitivities,

ADD, ADHD,ASD and more....SCD is helping all of us)

--- Original Message -----

To: pecanbread <mailto:pecanbread >

Sent: Friday, April 14, 2006 3:41 PM

Subject: Re: Newbie

Im not sure if anyone else has e mailed you back, but I think you might want

to e mail us ALL the ingredients in that syrup-Im pretty sure the syrup is

not an SCD OK food...am I right Jody and Carol?

Kerri

Newbie

> Hello:

>

> I am new to the diet, I just started my son (5) on Monday. I went to the

> DAN conference and I am convinced that I must try the SCD.

>

> I am confused about a number of thing. The boook Breaking the vivious

> cycle talks about phasing in certain food, if there is cramping and

> diarhea. However, my son has loose stool, no pain and no diarhea. Does

> this mean I can introduce lentils and beans and raw fruits and veggies. He

> is use to eating these foods and the symptom has always been loose stool

> and of course he has brain symptoms of PDD.

>

> Can anybody provide some views??

>

> Tara

>

>

[Guest guest]

I am trying many receipes without the egg but they donot seem to work well.

Anybody have good success with some recipes that are SCD and egg free?

Tara

Re: Newbie

-Hi - We are sort of in the same boat. Our 3 year old son has been

GFCF and egg and soy free for a year now with some good results but

we think SCD is the way to go. We are trying to phase in some SCD

recipes that he will eat and then gradually eliminate foods. I too

am very curious about when to add in fruits, vegetables, nut flours,

etc. because our son doesn't love meat and cannot eat eggs. We

Would really appreciate any information you get on that issue.

Thanks and good luck.

Randi

-- In pecanbread , " Tara " wrote:

>

> Hello:

>

> I am new to the diet, I just started my son (5) on Monday. I went

to the DAN conference and I am convinced that I must try the SCD.

>

> I am confused about a number of thing. The boook Breaking the

vivious cycle talks about phasing in certain food, if there is

cramping and diarhea. However, my son has loose stool, no pain and

no diarhea. Does this mean I can introduce lentils and beans and raw

fruits and veggies. He is use to eating these foods and the symptom

has always been loose stool and of course he has brain symptoms of

PDD.

>

> Can anybody provide some views??

>

> Tara

>

>

[Guest guest]

" I am trying many receipes without the egg but they donot seem to work

well. Anybody have good success with some recipes that are SCD and egg

free? "

Are you trying the egg free recipes from the pecanbread.com website or

are you trying to make the ones from the book but just leaving out the

eggs?

Jody

mom to -7 and -9

SCD 1/03

[Guest guest]

is there anyone here that only has sarcoid in their nervous system and nowhere else? If so, how were you diagnosed and what is your treatment like? Also, if you know any physicians in Ohio that specialize in neurosarcoidosis please let me know. I know that Dr. Baughman specializes in sarcoid, but not specifically neurosarcoidosis.

There are several members of the group that have NS only. This is a disease that ends up diagnosed after everything else has been ruled out.

Dr. Baughman should be able to send you to a neurologist that specializes in NS. He is one of the leading MD's in sarcoidosis, and should be a great source of information and referrals to others that specialize in their fields.

All of NS is treated in much the same way as systemic sarcoidosis. First line of treatment is prednisone (high dose) and then if that doesn't work, or when they taper you off, if your symptoms return, Methotrexate, Plaquenil, Cytoxan, Remicade, Humira, Enbrel, Imuran-- all the immunosupressants and Biological Response Modifiers can be used. It generally takes a combination of meds. For me, it is Methotrexate, Plaquenil and Remicade. This has taken alot of the body and bone pain away, along with the inflammation that is in my spine. I have pulmonary, systemic and neuro sarc. I did years of steroids, and now cannot tolerate them anymore.

In our LINKS there are articles on NS, along with more in the aRCHIVES.

The FSR--Foundation for Sarcoidosis Research is a great site. It will explain alot of the treatment options also.

Scroll down below the signature here-- and you'll see the site address for LINKS and ARCHIVES.

Take care,

Tracie

NS Co-owner/moderator

[Guest guest]

Dear Ebony:

I have neurosarcoidosis only, as far as I know. The only way to

confirm sarcoidosis of the Central Nervous System is by biopsy. I

developed sypmtoms in 1995 and have been on steroids since that

time. I chose not to have the biopsy done because it was not going

to change the treatment regimen whether sarcoid was confirmed or not,

my treatment was going to remain the same. My doctor's wanted to

biopsy the outer covering of my spinal cord called the dura mater and

hopefully find something.

A biopsy is not a guarantee that it will reveal anything conclusive.

But I hear Dr. Baughman is the best in the area. I too have " puffy

optic nerves " and have noticed a difference in my eye sight. I am

being treated now with methotrexate to help off set those problems.

My optic nerves are opaque now. A healthy optic never should be

pinkish in color upon exam.

I used to have bad headaches and be very sensitive to light. I would

occassionally get sharp pains in my head that would last for a few

seconds. Now, I just have tinkling feelings on my scalp, as if

something is crawling on the surface. No, I don't have lice (smile).

Intravenous steroids did help me my first two years after being told

of my illness. I was in remission until I started the caffiene,

nicotine and alcohol again. You see, I like espresso, scotch and

cigars. BUT NOT ANY MORE HUH! I started to work out and that did

help a bit. So if your bf can exercise and consider IV steroids for

a short period of time and move to oral medication perhaps this will

help. Getting a MRI periodically woulld show if the inflammation is

subsiding.

I am so sorry to her of your situation for I know first hand as does

others in the group how exhausting this illness can be. So weigh

your options carefully and decide the best course of action for you

and your bf.

God bless you truly with renewed health and vigor for your bf.

Brother

PS What is your bf's name?

>

> Hi all,

>

> I am writing on behalf of my bf. We have spent the last 2 years in

hospitals, ERs and doctor offices trying to determine what is wrong

with him. In summary, he has experienced the onset of seizures,

facial palsy at times, numbness in various parts of his body,

incredible pain in his head and spine, among other numerous

symptoms. They eventually were able to control his seizures, but

then they found a lesion in/on his spinal cord. He was put on a high

dose of steroids, which seemed to have help his back pain some and

did apparently shrink the lesion. However, he was still complaining

of back pain and head pressure. After testing his csf, his

neurologist and neurosurgeon, seemed to think that it was not a

spinal cord tumor, but rather an inflammatory disease. Which one,

however, they did not know. His neurologist suspected that it was

sarcoid and therefore ordered a chest CT, which came back negative.

He then referred him to see Dr. Baughman to do a biopsy. Dr.

> Baughman did a bronchoscopy, but also came back negative. He then

referred him to an ENT to do a biopsy of his lip and then right

behind the ear, both of which were negative.

>

> He just had a repeat MRI done because during his last neurology

visit, his neurologist noted that his optic nerves were very swollen

indicating head pressure again. He even asked a doctor to come give

a second opinion and the first thing that the doctor said was " So,

have you been blind since you were born? " It was a very scary

moment. Well, the results of the MRI did show some swelling, but

perhaps more importantly, it showed several white spots which were

not present less than a year ago. This seems to affirm the notion

that he has some inflammatory disease. The neurologist is leaning

away from MS and towards neurosarcoidosis, even though all biopsies

have come back negative. He is consulting with the neurosurgeon to

determine if 1) he feels that a brain biopsy is feasible or 2) he

should just start him on a high dose of steroids and see what happens.

>

> I know that was a long intro, but my question is, is there anyone

here that only has sarcoid in their nervous system and nowhere else?

If so, how were you diagnosed and what is your treatment like? Also,

if you know any physicians in Ohio that specialize in

neurosarcoidosis please let me know. I know that Dr. Baughman

specializes in sarcoid, but not specifically neurosarcoidosis.

>

> Thanks,

> EW

>

[Guest guest]

EW I have been to Dr Baughman & he is the one who put me on Cytoxan iv treatments at the Barrett Center at UC. I take it you're in the area? I'm in northern Kentucky.grannylunatic@... __________________________________________________

[Guest guest]

Yes, we are in Cincinnati. He is currently at University Hosp because he collapsed over the weekend. He has a known condition called hydrocephalus and it is believed that his shunt needs to be replaced. Since he is going to have neurosurgery, they have also decided to take a biopsy of one of his brain lesions to see if it is sarcoid. He will be having the surgery tomorrow so hopefully we will know for sure if he has it in the upcoming week.

EW

Re: Re: Newbie

EW

I have been to Dr Baughman & he is the one who put me on Cytoxan iv treatments at the Barrett Center at UC. I take it you're in the area? I'm in northern Kentucky.grannylunatic@ yahoo.com

____________ _________ _________ _________ _________ __

[Guest guest]

EW I also have hydro! I had my first shunt in 1997 and got meningitis after the surgery. In June of this year I had my shunt replaced. My neurosurgeon said they last an average of 9 years. This last surgery was much easier than the first and I am doing better except the cytoxan wears me out. I'll keep you and your husband in my prayers.grannylunatic@...

Check out the all-new Yahoo! Mail beta - Fire up a more powerful email and get things done faster.

[Guest guest]

Hi, I was diagnosed with crohn's about a year ago after ten years of symptoms.

For the last nine moths I gave been in remission on pentasa. About three weeks

ago I came down with a pretty good case of bronhitis which brought my crohn's

back with a vengence. I had read BTVC when I was diagnosed but when the meds

helped it was out of sight, out of mind. Anyway, I am now comitted to giving

this diet a fair try. I am four days in with no results so far and have a couple

questions. Is it normal to be so fatigued on this diet? I have absolutely no

energy. Are " nature made " vitamins scd safe? Mine say no sugar, wheat or gluten.

Is Tylenol scd safe? I have had a horrible headache ever since beginning. I feel

like I might be doing something wrong but have been very carefull. I've been

mainly eating the chicken soup, fish, beef, eggs and juice. I made yogurt, but

the only starter I could find in AK contains biffidus which the book recommends

against. Is this ok or should I wait until I can order a starter without

biffidus? My biggest symptoms are diarreaha and weight loss. What is a realistic

expectation as to when these may start to clear up? I'm nervous about my weight

and if I loose much more I will have to go see my G.I. And he will want to put

me on stronger meds which I don't want to do.

Thanks

[Guest guest]

Hey ..

Welcome to our SCD home! Sorry you had to find us, but glad you are empowered

to take your health and healing in your own hands..

A couple of things;

Have you familiarized yourself with PecanBread at all?

http://www.pecanbread.com/

A great SCD website.. geared twds kids and SCD but loaded with useful

information.

First and foremost absolutely no Bifidus whatsoever..

How long did you do the introductory diet? You may have to go back to intro

depending on some of your answers..

What Kind of juice are you drinking? Are you diluting it at least %50?

Are you having bad D and going to the toilet a lot? You may need to remove the

eggs for now until the D gets better.

Have you paid attention that the chicken you are using is pure chicken with no

illegal injectables?

You have a couple of different ways to proceed with yogurt starters. This is a

great link to familiarize yourself with the options you have available to you as

an SCD'er;

http://www.breakingtheviciouscycle.info/beginners_guide/yoghurt/yog_starters.htm

If you need to know if an item like " Nature Made " Supplement is legal on the

SCD- please ask the question and provide us with a link so we can see what types

of fillers and ingredients are used. One of us can help you. At this point by

what you described I cannot tell you either way due to lack of data. That way

provide a link- we can make heads and tails and know what you're talking about.

Your Crohn's may have come back with a vengeance due to the bronchitis due to

being on antibiotics for it? Am I right in assuming this? If so, which one did

you take?

If the worrisome issues persist you may need to do some stool cultures to see

something nasty didn't over- grow due to the antibiotic. Just putting that out

there.

Many of us experience extreme fatigue at the begining stages of the diet- this

is totally normal. Most attribute to our digestion and gut ecology shifting..

" Die off " of different microbes..

The fatigue can be killer.. this too shall pass.. just take it easy.

Also, have you tried epsom salt baths at all?

Elaine G said that medication are absolutely ok for us when we need them. So if

you must take the Tylenol, go ahead take it. However, if you are worried about

the illegal ingredients you can have Tylenol compounded by special compounding

pharmacies to be SCD compliant.

So, since we are all so different the time lines for when we start seeing

results and weight gain vary. This takes time. I am sorry I don't have a

better answer for you.. but I want to be honest and realistic with you.. Take a

lot of comfort that there have been many many before you and me to heal on this

amazing diet..

Familiarize yourself with the SCD websites and keep asking the support group

questions. We're a friendly group of people with or own individual quirks but

all committed to healing.. so we're like all in this boat together.

Again, welcome and keep asking questions..

Jodi

[Guest guest]

Hi ,

It is very important to follow the diet to the letter. I had initially started

doing everything wrong and it didn't work for me. Once I made sure everything

was SCD compliant, the pain, bloating, gas and mental fatigue started to go

away. Yes, my body was still tired, but there was so much healing going on at

that time. My mind was clear and I felt better than I had in a long long time.

I have answered your questions below.

>>>Anyway, I am now committed to giving this diet a fair try.

This is great news and you are at the right place!!!!

>>>I am four days in with no results so far and have a couple questions.

Are you having symptoms?

>>>Is it normal to be so fatigued on this diet? I have absolutely no energy.

For me it was. I think when you're body is healing all your energy goes with it.

>>>Are " nature made " vitamins scd safe? Mine say no sugar, wheat or gluten.

A link to the actual product would be very helpful. I'd wager there is illegal

iron in their supplement. Lucy at www.lucyskitchen.com sells a legal

multi-vitamin, b vitamin (both of which I take), and calcium

http://www.lucyskitchenshop.com/freedavitamins.html.

>>>Is Tylenol scd safe? I have had a horrible headache ever since beginning. I

feel like I might be doing something wrong but have been very carefull.

Yes, original Tylenol is SCD safe, but be careful because everyone reacts

differently. Headache is just a sign of die-off. That's when the bad bacteria in

your system are dying and making you feel yuck. Symptoms come in many varieties.

For me, I felt like I was in a flare with the flu on top of it. Everyone is

different on how often and to what extent they have die off. I know I had some

initially and then at 3 and 6 months. Then at a year. I skipped the 9-month

flare. The reason it happens that way is because the easy to kill stuff dies

first and then each time you starve something out (by eating SCD), it dies

causing your symptoms to flare.

>>>>I've been mainly eating the chicken soup, fish, beef, eggs and juice.

You have to be very careful with chicken. The reason I was not successful at

first is because my chicken had broth added to it. When I switched to no broth

added chicken, I was great. Oh, and at first, I had to take out the onions and

celery and blend the carrots back into the broth (with my handy dandy immersion

blender) then add the chicken pieces. About 2 weeks later, I could handle not

blending the carrots back but I was still removing the onions and celery. About

2 weeks later, I would blend the onions and celery back into the broth and add

the carrots and chicken. Another 2 weeks, I was eating the soup without blending

anything. I do well with on Farms chicken and my local A/G stores sell

their own chicken which has no solution added to it. What kind of juice are you

drinking? The only ones approved SCD safe are Tropicana Pure Premium OJ, Welch's

100% Grape Juice, and the Just Juice line from Knudsen's. Are you diluting them?

At first, I had to dilute them 100% or I would have a reaction (too much sugar

at one time). I used 50% juice, 50% water to make gelatin. That was such a

savior for me.

>>>>I made yogurt, but the only starter I could find in AK contains biffidus

which the book recommends against. Is this ok or should I wait until I can order

a starter without biffidus?

No, it's not ok. You can use Danon Plain Full Fat Yogurt as a starter. You can

look up how to make yogurt using yogurt as a starter on

www.breakingtheviciouscycle.info. I think it makes yummier yogurt. Just check

the labels and make sure there is no pectin or other illegals. I get my starter

from Lucy's Kitchen. It's the Yogourmet starter. The Whole Foods close to me

also sells it. Lucy also has an Acidophilus pill you can take. My body doesn't

tolerate the yogurt well even though I absolutely love it so I've been taking

the pills for a very long time and just make yogurt from time to time. When I

get my dehydrator, I'll make yogurt again and hopefully will tolerate it better.

>>>>My biggest symptoms are diarreaha and weight loss. What is a realistic

expectation as to when these may start to clear up? I'm nervous about my weight

and if I loose much more I will have to go see my G.I. And he will want to put

me on stronger meds which I don't want to do.

Everyone is different. Butter, with no added illegals, olive oil, and coconut

oil (watch out it will cause die off) are good fats to add to everything.

Homemade mayo is another source of high calorie good fats. Butter makes the

chicken soup so yummy and will help you keep from loosing more weight. I add

mayo and mustard to my roast and melt a little cheese on top and it feels like

I'm eating a roast beef sandwich. I have Crohn's with constipation and the diet

hasn't helped much in that department. Though, I am still symptomatic, just not

painfully so. You can try legal cheeses. Avocadoes are usually tolerated well

and have a lot of good fats. Boiled eggs were my go to during the beginning of

the diet and still are today!!! I never had D but I think eggs might make it

worse. Boiled eggs are very portable as they stay good at room temp for several

days. Mix boiled eggs with mayo and a little mustard for a nice egg salad. Ripe

bananas were the next thing after intro I was able to tolerate. Just stay far

far away from nut butter and nut flour goodies until you feel like healing has

taken place and then start very slowly with those. I still don't tolerate much

almost 2 years into the diet. Everyone is different though. My mantra is " take

it slow " . It's hard. You are hungry and want to eat food but you have to give

yourself time to heal.

Misty Kimble

CD - no meds

SCD - 22 months

[Guest guest]

Hi ,

Welcome to the group. I have had Crohn’s Disease (CD) for

21 years – 13 years of symptoms before I was dx’d. Doc said I was

one of the worst cases he’d ever seen. I did the standard medical

treatment (prednisone, 16 pills Pentasa/day and then tried 6-MP which nearly

killed me). I did not experience any healing until I found the SCD. The diet

saved my life, literally. When I started the SCD I was having 15 – 20 bloody

diarrhea (D) bm’s a day. I was working a full time job that was

physically demanding and I was just wasting away.

Fatigue is normal at the start of the SCD. Weight loss was a big

issue for me. But, I got pain relief right away on the SCD. I am telling you my

story so that you know you are not alone.

Your gut will need time to heal – in my case it took years,

but I had been so sick for a very long time. I had the “three month flare”

more times than I can count, with each flare a little less severe than the

last. So, not to discourage you, but you need to be realistic about the time it

takes to heal, it does not happen overnight! It is recommended to do the SCD

with fanatical adherence for 1 – 2 years in order to starve out the bad

gut pathogens that cause the vicious cycle.

I take Freeda SCD multi-vitamins & B Complex, as well as the

Cal/Mag. I also take Vitamin D3, 4,000 IU/day. I use Carlson Labs Liquid

Vitamin D3 in saponified coconut oil.

Speaking of coconut oil, that is very helpful for weight gain as

is butter. When you can tolerate these foods, they are high calorie: avocado,

butternut squash, eggs, legal hard cheeses, nut butters. It’s helpful,

when you get the legal yogurt starter, to make yogurt from half & half and/or

cream (make sure there are no illegal ingredients like carageenan or other

thickeners) for extra calories. I always drip my yogurt to make a dense, rich food.

My recommendation is to do the intro diet for a few days. Make

and eat bone broth soups. Here’s a link about bone broth: http://www.townsendletter.com/FebMarch2005/broth0205.htm

Directions are near the bottom of the page.

Again, welcome & keep asking questions – there’s

lots of folks who have had similar experiences as you and their knowledge is

vast.

Carol

CD 21 years SCD 5 years B12 shots LDN cream 3

mg.

From:

BTVC-SCD [mailto:BTVC-SCD ] On Behalf Of travisak2561

Hi, I was diagnosed with crohn's about a year

ago after ten years of symptoms. For the last nine moths I gave been in

remission on pentasa. About three weeks ago I came down with a pretty good case

of bronhitis which brought my crohn's back with a vengence. I had read BTVC

when I was diagnosed but when the meds helped it was out of sight, out of mind.

Anyway, I am now comitted to giving this diet a fair try. I am four days in

with no results so far and have a couple questions. Is it normal to be so

fatigued on this diet? I have absolutely no energy. Are " nature made "

vitamins scd safe? Mine say no sugar, wheat or gluten. Is Tylenol scd safe? I

have had a horrible headache ever since beginning. I feel like I might be doing

something wrong but have been very carefull. I've been mainly eating the

chicken soup, fish, beef, eggs and juice. I made yogurt, but the only starter I

could find in AK contains biffidus which the book recommends against. Is this

ok or should I wait until I can order a starter without biffidus? My biggest

symptoms are diarreaha and weight loss. What is a realistic expectation as to

when these may start to clear up? I'm nervous about my weight and if I loose

much more I will have to go see my G.I. And he will want to put me on stronger

meds which I don't want to do.

Thanks

[Guest guest]

> Hi, I was diagnosed with crohn's about a year ago after ten years of > symptoms. For the last nine moths I gave been in remission on pentasa. > About three weeks ago I came down with a pretty good case of bronhitis > which brought my crohn's back with a vengence. I had read BTVC when I > was diagnosed but when the meds helped it was out of sight, out of mind. > Anyway, I am now comitted to giving this diet a fair try. I am four days > in with no results so far and have a couple questions. Is it normal to > be so fatigued on this diet? I have absolutely no energy. Are "nature > made" vitamins scd safe? Mine say no sugar, wheat or gluten. Is Tylenol > scd safe? I have had a horrible headache ever since beginning. I feel > like I might be doing something wrong but have been very carefull. I've > been mainly eating the chicken soup, fish, beef, eggs and juice. I made > yogurt, but the only starter I could find in AK contains biffidus which > the book recommends against. Is this ok or should I wait until I can > order a starter without biffidus? My biggest symptoms are diarreaha and > weight loss. What is a realistic expectation as to when these may start > to clear up? I'm nervous about my weight and if I loose much more I will > have to go see my G.I. And he will want to put me on stronger meds which > I don't want to do.> Thanks> >Fatigue is, of course, itself a major symptom of Crohn's. But if you're having more since starting the diet it's no doubt your body adjusting -- as as the headaches. That could be a sign of "die-off." I'd also strongly urge you to look into taking LDN. See www.lowdosenaltrexone.orgn -- Now available. A fine Christmas gift. Request a signed copies and free gift wrapping.Confessions of a Cataholic: My Life With the 10 Cats Who Caused My Addictionby n Van Tilwww.wordpowerpublishing.com ; free shipping in U.S.; reduced shipping elsewhere