Newbie here

[Guest guest]

Hi there!

My beautiful daughter was born almost a month ago with

bilateral club feet. She is being treated with the Ponseti method.

I have a couple of questions. First of all, both of her big toes

curve inward toward her other toes and the second toe on her left

foot sticks way up. Is this common for babies born with club feet?

The toes do not look to be in a normal position even when the feet

are held in a corrected position. (She has moderate club feet which

are responding very well to the casts and her right foot is almost

at correction with two casts. She will not need a tenotomy on that

foot.)

Also, after we removed her second cast, her legs were bruised and

her orthopedist recommended that we take a 10 day break with the

casting to give them time to heal. Her orthopedist was trained by

Dr. Ponseti and appears to be very careful and precise so we don't

believe he caused the problem with carelessness or ignorance. My

theory is that she grew too quickly for the casts. We are very tall

people and have big kids who grow quickly so I think that is what

happened. Has anyone else had this experience?

I am very new at dealing with this issue. I had three other

children without club feet before was born so I have lots of

questions. I look forward to getting some information and practical

tips and support here. I don't know anyone with a child with club

feet so I feel pretty alone in my struggle with . Thanks in

advance for any help,

Carol, mom to four kids, including an absolutely perfect baby girl

with club feet

[Guest guest]

Hi Carol,

Congratulations on the birth of your daughter. Funny toes seem pretty

common around here. I don't think that they have 'linked' it to

clubfoot but it does seem that lots of our kids have these funny

toes. Grace too has these funny lil toes but they look better already

(she is 16 mos now) and they are looking better all the time.

's toes will probably straighten out over time as well.

If you join the clubfoot pics group, you can share pics with the

group and there is a file there in the photo's section with pics of

some funny lil baby toes. The link is

http://health.groups.yahoo.com/group/CFPics/

Grace was also a pretty big and chunky baby (she has grown nicely

into her chub I am happy to say lol) and outgrew her last casts. She

had terrible bruising and open wounds on her leg (she is unilateral

right). We kept her out of a cast for a week to let her leg heal and

then went into the brace. She was actually corrected to about an 85

degree outward rotation and her foot didn't end up needing another

cast, we went right into the FAB.

It is more common though I think to have a healing cast and it sounds

like the right thing for . Grace was overcorrected so much and

her foot was pretty loose (didn't need a tenotomy), that's why I

think our doctor let her out for that week. Also, I was amazed at how

fast her leg healed, it was better in a few days. There are pics of

it (still a bit hard for me to look at) on the cfpics site in the

photos section in the casts folder I think.

Anyway, glad that you have a good Ponseti doctor that you are

confident in and welcome to the group, you will find this board an

amazing place, great people, great advise and lots of laughs.

& Grace 16 mos

Unilateral rcf FAB 13 hrs

>

> Hi there!

>

> My beautiful daughter was born almost a month ago with

> bilateral club feet. She is being treated with the Ponseti

method.

> I have a couple of questions. First of all, both of her big toes

> curve inward toward her other toes and the second toe on her left

> foot sticks way up. Is this common for babies born with club

feet?

> The toes do not look to be in a normal position even when the feet

> are held in a corrected position. (She has moderate club feet

which

> are responding very well to the casts and her right foot is almost

> at correction with two casts. She will not need a tenotomy on that

> foot.)

>

> Also, after we removed her second cast, her legs were bruised and

> her orthopedist recommended that we take a 10 day break with the

> casting to give them time to heal. Her orthopedist was trained by

> Dr. Ponseti and appears to be very careful and precise so we don't

> believe he caused the problem with carelessness or ignorance. My

> theory is that she grew too quickly for the casts. We are very

tall

> people and have big kids who grow quickly so I think that is what

> happened. Has anyone else had this experience?

>

> I am very new at dealing with this issue. I had three other

> children without club feet before was born so I have lots of

> questions. I look forward to getting some information and

practical

> tips and support here. I don't know anyone with a child with club

> feet so I feel pretty alone in my struggle with . Thanks in

> advance for any help,

>

> Carol, mom to four kids, including an absolutely perfect baby girl

> with club feet

>

[Guest guest]

Actually, the pics of her leg after outgrowing her cast are in the

photos section on cfpics under the sores file - ouch!

& Grace

> >

> > Hi there!

> >

> > My beautiful daughter was born almost a month ago with

> > bilateral club feet. She is being treated with the Ponseti

> method.

> > I have a couple of questions. First of all, both of her big toes

> > curve inward toward her other toes and the second toe on her left

> > foot sticks way up. Is this common for babies born with club

> feet?

> > The toes do not look to be in a normal position even when the

feet

> > are held in a corrected position. (She has moderate club feet

> which

> > are responding very well to the casts and her right foot is

almost

> > at correction with two casts. She will not need a tenotomy on

that

> > foot.)

> >

> > Also, after we removed her second cast, her legs were bruised and

> > her orthopedist recommended that we take a 10 day break with the

> > casting to give them time to heal. Her orthopedist was trained

by

> > Dr. Ponseti and appears to be very careful and precise so we

don't

> > believe he caused the problem with carelessness or ignorance. My

> > theory is that she grew too quickly for the casts. We are very

> tall

> > people and have big kids who grow quickly so I think that is what

> > happened. Has anyone else had this experience?

> >

> > I am very new at dealing with this issue. I had three other

> > children without club feet before was born so I have lots

of

> > questions. I look forward to getting some information and

> practical

> > tips and support here. I don't know anyone with a child with

club

> > feet so I feel pretty alone in my struggle with . Thanks

in

> > advance for any help,

> >

> > Carol, mom to four kids, including an absolutely perfect baby

girl

> > with club feet

> >

>

[Guest guest]

Hi Carol,

My son also grew very quickly (he was born at 4 pounds and tripled his

weight in a few months), we had our casts changed every 5 days, we had to

push for this, but I had a feeling he would grow very quickly because of his

low birth weight (and he did). There was one time when we took a cast off

before it was due to be changed because he was crying with discomfort and he

had grown out of it in three days! Our hospital (about 40 minute-1hr drive)

will put on a new cast whenever it is needed so if we had any issues we

would telephone and let them know and head in that day or the next morning

if it happening in the night. After his tenotomy he grew out of his surgery

cast and I wish that I had taken it off sooner (I was worried he hadn¹t

healed), as his leg was sore and rubbed raw and bruised ­ as they cut the

cast off, it popped open (this was a heavier cast to our usual manipulation

casts). Definitely ask for a closer casting schedule! Also, my boy is 18

months old and fine now, no sign of where that tight cast had hurt him.

Mainly I wanted to say, go with your gut instincts! You know your child and

you are the one who can fight for her needs most, if you feel that more

regular casting will have the desired effect try it!!!!

Goodluck and keep us posted,

Tamsin

Mother of Jasper (13 may, 04; bilateral, 13hrs ddb)

> Jenni,

>

> That is really good to hear and reassures me. Thanks so much for sharing!

>

> Carol

> Re: Newbie here

>

>

> Congratulations on the birth of your daughter. Our doctor told us that she

> has never seen a child with clubfoot that did not have some kind of toe

> issues. Kelsey's toes also curve toward the center and even her toenails

> grow with a curve to them. We were told that it is really just a cosmetic

> issue with her. If you are concerned, I would discuss it with your doctor

> and get their opinion.

>

> Jenni

>

>

> Carol wrote: Hi there!

>

> My beautiful daughter was born almost a month ago with

> bilateral club feet. She is being treated with the Ponseti method.

> I have a couple of questions. First of all, both of her big toes

> curve inward toward her other toes and the second toe on her left

> foot sticks way up. Is this common for babies born with club feet?

> The toes do not look to be in a normal position even when the feet

> are held in a corrected position. (She has moderate club feet which

> are responding very well to the casts and her right foot is almost

> at correction with two casts. She will not need a tenotomy on that

> foot.)

>

> Also, after we removed her second cast, her legs were bruised and

> her orthopedist recommended that we take a 10 day break with the

> casting to give them time to heal. Her orthopedist was trained by

> Dr. Ponseti and appears to be very careful and precise so we don't

> believe he caused the problem with carelessness or ignorance. My

> theory is that she grew too quickly for the casts. We are very tall

> people and have big kids who grow quickly so I think that is what

> happened. Has anyone else had this experience?

>

> I am very new at dealing with this issue. I had three other

> children without club feet before was born so I have lots of

> questions. I look forward to getting some information and practical

> tips and support here. I don't know anyone with a child with club

> feet so I feel pretty alone in my struggle with . Thanks in

> advance for any help,

>

> Carol, mom to four kids, including an absolutely perfect baby girl

> with club feet

>

>

>

>

>

>

>

>

[Guest guest]

Carol,

My son has bilateral cf and his big toes also lean towards the other's and he

had a toe on his left foot which stuck up abnormally and did not look right when

held in the correct position. He is done with the casts and has been on the DBB

for 3 months now. The toe no longer sticks up and doesn't look that abnormal

anymore. I believe it doesn't stick up anymore due to the shoes holding it down

23 hours a day.

As for the big toes, our doctor (who was trained by Dr. Ponseti) isn't that

concerned. He said it's not something we'll know about until he starts walking.

My hope, of course, is that it's not an issue then either.

Carol Shelton wrote:

Jenni,

That is really good to hear and reassures me. Thanks so much for sharing!

Carol

Re: Newbie here

Congratulations on the birth of your daughter. Our doctor told us that she

has never seen a child with clubfoot that did not have some kind of toe issues.

Kelsey's toes also curve toward the center and even her toenails grow with a

curve to them. We were told that it is really just a cosmetic issue with her.

If you are concerned, I would discuss it with your doctor and get their

opinion.

Jenni

Carol wrote: Hi there!

My beautiful daughter was born almost a month ago with

bilateral club feet. She is being treated with the Ponseti method.

I have a couple of questions. First of all, both of her big toes

curve inward toward her other toes and the second toe on her left

foot sticks way up. Is this common for babies born with club feet?

The toes do not look to be in a normal position even when the feet

are held in a corrected position. (She has moderate club feet which

are responding very well to the casts and her right foot is almost

at correction with two casts. She will not need a tenotomy on that

foot.)

Also, after we removed her second cast, her legs were bruised and

her orthopedist recommended that we take a 10 day break with the

casting to give them time to heal. Her orthopedist was trained by

Dr. Ponseti and appears to be very careful and precise so we don't

believe he caused the problem with carelessness or ignorance. My

theory is that she grew too quickly for the casts. We are very tall

people and have big kids who grow quickly so I think that is what

happened. Has anyone else had this experience?

I am very new at dealing with this issue. I had three other

children without club feet before was born so I have lots of

questions. I look forward to getting some information and practical

tips and support here. I don't know anyone with a child with club

feet so I feel pretty alone in my struggle with . Thanks in

advance for any help,

Carol, mom to four kids, including an absolutely perfect baby girl

with club feet

[Guest guest]

Hi! Call me Gwen. My name is Gwen Sullivan. My other symptoms besides diarrhea

are burning in my stomach, cramping, frequent UTIs, vomiting acid, fogginess and

fatigue, stomach rumbling and gurgling, frustration and depression because I

can't really go anywhere anymore (is that a symptom???). I'm already getting

relief from the rumbling and cramping.

The pain has been very motivating so I'm ready to make dietary changes. I've

made lots of diet changes in the past, but definitely the wrong ones. I'm lucky

that I like most foods. Thanks for the encouragement. Looking forward...

Gwen

>

> > I'm brand new to this board and SCD. Just started last Wednesday, April 21,

2010. I'm grateful to find this group. I apologize for the length of this

message.

> >

> > I have been dealing with ongoing and escalating symptoms for years, but

remained undiagnosed. Over the years, I've moved a lot, so I've had access to

various doctors. Even though I've presented with symptoms to multiple doctors,

no one has ever said to do anything other than stop stressing, eat more fiber,

and drink more water. A couple suggested medications, but I never followed

through. (No insurance during that time was a huge factor in that decision.) I

really was clueless and remained kind of disconnected, never putting all my

symptoms together and my idea of a " healthy " diet was eating lots of complex

carbs with a little bit of meat, if any, and not much fat. I was diagnosed with

lupus in 1991, but I've been in remission for 15 years following 2 years of

acupuncture and lots of self-care. I have psoriasis, too, but am lucky that it's

isolated to one area right now. Overall, I'm pretty healthy and don't take any

maintenance meds for anything else, so I consider myself to be very lucky.

> >

> > But then… right after Thanksgiving, I decided to lose a few pounds and try

to get my stomach problems in order (which in my mind surely must have been

caused by eating too much), so I joined a popular weight loss group, admittedly

in a moment of insanity. I started eating more low-fat foods and " franken "

cheeses, etc., lots of diet foods. Of course, my symptoms escalated, but I was

still clueless. I went to my newly selected Nurse Practitioner for the symptoms

and she told me to increase my fiber and to do it by drinking a commercial

powdered fiber mix. I decided that if I was going to eat a high fiber diet, that

I should do it with foods instead of a powdered mix, so I went totally vegan and

starting eating soy yogurt and cheeses and meat subs, high fiber grains and

brown rice, pistachios, etc., getting 35 to 40g fiber per day. As you already

know, I got so much worse and although my life was already so small because of

my need to be in the bathroom all the time. I became basically isolated, having

12-14 episodes of explosive diarrhea per day. I still didn't make the connection

to my diet because my NP kept saying to eat more fiber. I've missed several days

of work since January 5, usually two or three days at a time. During my last

sick leave, my NP finally ordered blood work to check for celiac (maybe Crohn's?

is that detectable through blood test?) and fecal tests to check for bacteria. I

was dehydrated so the blood draw took forever. The NP still didn't suggest any

dietary changes. My blood work and fecal tests all came back normal, and on the

paperwork, it basically said you're normal so don't come back.

> >

> > Thank goodness a co-worker figured out that I was having a problem. She

quietly left BTVC plus a couple of other books on my desk, but BTVC was the one

that made the most sense to me. The next day, I started SCD and even in this

short period of time, I feel so much better. I'm still struggling with the

mental shift from vegan to carnivore, but hey, I'm highly motivated. (I'm

mourning some of my fave foods.) My biggest concern is that I'm still

undiagnosed. Even though I've already seen improvement, I'm scared that my

self-diagnosis is wrong. My question is… is there anyone else who remains

undiagnosed? I don't have a lot of faith in the medical profession about this

disease anyway,

>

> yeah - join the club.

>

> > but still, I'd like to know what is really wrong. Looking back, I've been

dealing with this in various stages since I was 14 or 15 and my Mom also had the

exact same problems, which were also undiagnosed. Thanks for listening/reading.

I'll be lurking around the board reading as much as I can.

>

> For a complete diagnosis, you pretty much need a colonoscopy or sigmoidoscopy.

Celiac can

> be diagnosed through a blood test if you have been eating gluten. I'm not

sure about Crohn's

> however. And you can't diagnose UC that way either - though you can diagnose

whether your

> C-Reactive protein's are elevated, indicating inflammation. But a number of

people on the list

> have undiagnosed IBS - or their doctors give them the bit about eating more

fiber which

> rarely works. You'd think they would understand cause and effect a bit better

by now. But the

> conventional wisdom on nutrition is really below par.

>

> What, besides diarrhea, are your symptoms?

>

> Yeah, it's hard giving up some favorite foods, but in a short while you will

acquire new

> ones that you like just as much.

>

> What should we call you?

>

> Mara

>

[Guest guest]

Hi there! I'm a newbie too Today is day 12 for me! Not being diagnosed with

*anything* hasn't stopped me from doing everything in my power to fix my

digestive problems. I know how frustrating it is to know something is

definitely wrong even though the doctors can't find anything with all their

tests. Oh boy, I've heard that stress line before, and I was actually buying

into it for a while. I have tried almost every possible dietary change and for

about a month before I discovered SCD I was, get ready for it: free of gluten,

soy, dairy, sugar, corn, rice, potatoes, almost all processed food, caffeine,

chocolate...and I was making everything myself. Oh and whole fruits and

vegetables also made me soooo blah.

I pretty much have bloating, gas pressure, and constipation, no diarrhea, but it

was just so frustrating that every thing I ate gave me bloating. So even when I

pretty much was eating smoothies, gluten free bread, peanut butter, avocado,

meats and a couple vegetables it all still was so uncomfortable.

It was horribly depressing with my limited diet and I was actually getting

excited about life again reading about SCD. I was like, hey, a limited diet

that actually is proven to heal your system? I'm done with my crappy diet! I

like following someone else's lead, it takes a lot of the pressure off. Now

that we're on SCD, we both can just focus on getting better and not worry

anymore.

I have to say, a real lifesaver has been my acupuncturist, who understood me

when I described die-off symptoms, and he understood how excited feeling bad

made me, that means its working!! And he even suggested being outside for at

least a half hour each day, because it really helps releasing the toxins (I

highly recommend this, even if you're feeling really weak and want to lay on the

couch all day.) So having at least one supportive person outside of the

internet is really helpful, just to be able to have that one on one

understanding.

So I'm not sure if you have die-off or not, but once you get the symptoms don't

be worried, just try to deal with it the best you can. There are tons of

suggestions in this group and the pecanbread one on how to deal with the

symptoms.

And I'm sure you'll hear this a lot, but having a diary is really key, and even

though I'm not even 2 weeks in, it has helped me identify certain foods that may

have triggered my bloating worsening (my guess right now is that it's probiotics

creating more die-off reactions). So pretty much write everything you add into

your diet, foods, supplements and the level of your pain and symptoms for the

day. After you get used to it, the sense of accomplishment in being in control

of what's going into your body is kind of fun and rewarding (maybe it's just me,

haha).

Oh, and I made this mistake my first week, I was in the kitchen every day

because I wasn't organized. Try to make as much food, cooked chicken, turkey,

fish, pureed vegetables, soup, etc. at one time so you can snack on these things

if you're feeling really weak and not in the mood to steam vegetables, and

puree, etc...it gets really tiring.

And I'm definitely not an expert, but there really isn't any harm doing this

diet undiagnosed. It is a healthy diet, and if you have had all the tests,

there's nothing else you can do. Take care of yourself, and make sure you have

the best quality of life possible!

Good luck, and I hope that you feel better soon!

~Ellen

>

> I'm brand new to this board and SCD. Just started last Wednesday, April 21,

2010. I'm grateful to find this group. I apologize for the length of this

message.

>

> I have been dealing with ongoing and escalating symptoms for years, but

remained undiagnosed. Over the years, I've moved a lot, so I've had access to

various doctors. Even though I've presented with symptoms to multiple doctors,

no one has ever said to do anything other than stop stressing, eat more fiber,

and drink more water. A couple suggested medications, but I never followed

through. (No insurance during that time was a huge factor in that decision.) I

really was clueless and remained kind of disconnected, never putting all my

symptoms together and my idea of a " healthy " diet was eating lots of complex

carbs with a little bit of meat, if any, and not much fat. I was diagnosed with

lupus in 1991, but I've been in remission for 15 years following 2 years of

acupuncture and lots of self-care. I have psoriasis, too, but am lucky that it's

isolated to one area right now. Overall, I'm pretty healthy and don't take any

maintenance meds for anything else, so I consider myself to be very lucky.

>

> But then… right after Thanksgiving, I decided to lose a few pounds and try to

get my stomach problems in order (which in my mind surely must have been caused

by eating too much), so I joined a popular weight loss group, admittedly in a

moment of insanity. I started eating more low-fat foods and " franken " cheeses,

etc., lots of diet foods. Of course, my symptoms escalated, but I was still

clueless. I went to my newly selected Nurse Practitioner for the symptoms and

she told me to increase my fiber and to do it by drinking a commercial powdered

fiber mix. I decided that if I was going to eat a high fiber diet, that I should

do it with foods instead of a powdered mix, so I went totally vegan and starting

eating soy yogurt and cheeses and meat subs, high fiber grains and brown rice,

pistachios, etc., getting 35 to 40g fiber per day. As you already know, I got so

much worse and although my life was already so small because of my need to be in

the bathroom all the time. I became basically isolated, having 12-14 episodes of

explosive diarrhea per day. I still didn't make the connection to my diet

because my NP kept saying to eat more fiber. I've missed several days of work

since January 5, usually two or three days at a time. During my last sick leave,

my NP finally ordered blood work to check for celiac (maybe Crohn's? is that

detectable through blood test?) and fecal tests to check for bacteria. I was

dehydrated so the blood draw took forever. The NP still didn't suggest any

dietary changes. My blood work and fecal tests all came back normal, and on the

paperwork, it basically said you're normal so don't come back.

>

> Thank goodness a co-worker figured out that I was having a problem. She

quietly left BTVC plus a couple of other books on my desk, but BTVC was the one

that made the most sense to me. The next day, I started SCD and even in this

short period of time, I feel so much better. I'm still struggling with the

mental shift from vegan to carnivore, but hey, I'm highly motivated. (I'm

mourning some of my fave foods.) My biggest concern is that I'm still

undiagnosed. Even though I've already seen improvement, I'm scared that my

self-diagnosis is wrong. My question is… is there anyone else who remains

undiagnosed? I don't have a lot of faith in the medical profession about this

disease anyway, but still, I'd like to know what is really wrong. Looking back,

I've been dealing with this in various stages since I was 14 or 15 and my Mom

also had the exact same problems, which were also undiagnosed. Thanks for

listening/reading. I'll be lurking around the board reading as much as I can.

>

[Guest guest]

I'm sorry that you both have to be here ( better to not have digestive issues)

but you have come to a very good place for advice on how to follow SCD and eat a

healthier diet.

Take it one day at a time, follow it strictly. You will feel better..

PJ

> >

> > I'm brand new to this board and SCD. Just started last Wednesday, April 21,

2010. I'm grateful to find this group. I apologize for the length of this

message.

> >

> > I have been dealing with ongoing and escalating symptoms for years, but

remained undiagnosed. Over the years, I've moved a lot, so I've had access to

various doctors. Even though I've presented with symptoms to multiple doctors,

no one has ever said to do anything other than stop stressing, eat more fiber,

and drink more water. A couple suggested medications, but I never followed

through. (No insurance during that time was a huge factor in that decision.) I

really was clueless and remained kind of disconnected, never putting all my

symptoms together and my idea of a " healthy " diet was eating lots of complex

carbs with a little bit of meat, if any, and not much fat. I was diagnosed with

lupus in 1991, but I've been in remission for 15 years following 2 years of

acupuncture and lots of self-care. I have psoriasis, too, but am lucky that it's

isolated to one area right now. Overall, I'm pretty healthy and don't take any

maintenance meds for anything else, so I consider myself to be very lucky.

> >

> > But then… right after Thanksgiving, I decided to lose a few pounds and try

to get my stomach problems in order (which in my mind surely must have been

caused by eating too much), so I joined a popular weight loss group, admittedly

in a moment of insanity. I started eating more low-fat foods and " franken "

cheeses, etc., lots of diet foods. Of course, my symptoms escalated, but I was

still clueless. I went to my newly selected Nurse Practitioner for the symptoms

and she told me to increase my fiber and to do it by drinking a commercial

powdered fiber mix. I decided that if I was going to eat a high fiber diet, that

I should do it with foods instead of a powdered mix, so I went totally vegan and

starting eating soy yogurt and cheeses and meat subs, high fiber grains and

brown rice, pistachios, etc., getting 35 to 40g fiber per day. As you already

know, I got so much worse and although my life was already so small because of

my need to be in the bathroom all the time. I became basically isolated, having

12-14 episodes of explosive diarrhea per day. I still didn't make the connection

to my diet because my NP kept saying to eat more fiber. I've missed several days

of work since January 5, usually two or three days at a time. During my last

sick leave, my NP finally ordered blood work to check for celiac (maybe Crohn's?

is that detectable through blood test?) and fecal tests to check for bacteria. I

was dehydrated so the blood draw took forever. The NP still didn't suggest any

dietary changes. My blood work and fecal tests all came back normal, and on the

paperwork, it basically said you're normal so don't come back.

> >

> > Thank goodness a co-worker figured out that I was having a problem. She

quietly left BTVC plus a couple of other books on my desk, but BTVC was the one

that made the most sense to me. The next day, I started SCD and even in this

short period of time, I feel so much better. I'm still struggling with the

mental shift from vegan to carnivore, but hey, I'm highly motivated. (I'm

mourning some of my fave foods.) My biggest concern is that I'm still

undiagnosed. Even though I've already seen improvement, I'm scared that my

self-diagnosis is wrong. My question is… is there anyone else who remains

undiagnosed? I don't have a lot of faith in the medical profession about this

disease anyway, but still, I'd like to know what is really wrong. Looking back,

I've been dealing with this in various stages since I was 14 or 15 and my Mom

also had the exact same problems, which were also undiagnosed. Thanks for

listening/reading. I'll be lurking around the board reading as much as I can.

> >

>

[Guest guest]

Day 12... great! I've done some crazy diets and food eliminations myself. I

really was brainwashed into thinking that eating whole grains was the answer to

everything. Thank you so much for posting and for the encouragement. I've been

in counseling - I'm lucky that I work for a university and I'm a student so

counseling is free - and my counselor just insisted that I get back in front of

the doctor and try to get a diagnosis. For a long time, I really believed that I

was stressing myself into these symptoms until she got me back on track.

I assume that die-off symptoms are the fog/lethargy/blahs/depression that occur

when the gut's bad stuff starts screaming to be fed? I am not looking forward to

that, but I have a most understanding boss and plenty of sick leave left, so I'm

keeping that in my back pocket.

I know most people lose weight with the diseases here, but I did not. I need to

lose about 15 pounds and I'm a little concerned about gaining.

One of my issues is managing space. My husband and I live in our motorhome out

here because I work for a grant and my job is temporary (ends in September). If

I get picked up by an institutional department at the university, we will do

something different. 'Til then, I have an RV-sized fridge, which leaves little

room for extras. I do have a dorm fridge in my office where I can store some

additional things. It's certainly time to get creative.

Do you or did you have sugar cravings? Given that your diet was already pretty

restricted, maybe not. I was on a sugar binge just before I started SCD. I

pretty much figured " what the heck " since no matter what I ate, it seemed to

upset my stomach.

Thanks for the advice and thanks for listening. It sounds like you are on the

road to recovery. I hope that is the case for you.

Gwen

> >

> > I'm brand new to this board and SCD. Just started last Wednesday, April 21,

2010. I'm grateful to find this group. I apologize for the length of this

message.

> >

> > I have been dealing with ongoing and escalating symptoms for years, but

remained undiagnosed. Over the years, I've moved a lot, so I've had access to

various doctors. Even though I've presented with symptoms to multiple doctors,

no one has ever said to do anything other than stop stressing, eat more fiber,

and drink more water. A couple suggested medications, but I never followed

through. (No insurance during that time was a huge factor in that decision.) I

really was clueless and remained kind of disconnected, never putting all my

symptoms together and my idea of a " healthy " diet was eating lots of complex

carbs with a little bit of meat, if any, and not much fat. I was diagnosed with

lupus in 1991, but I've been in remission for 15 years following 2 years of

acupuncture and lots of self-care. I have psoriasis, too, but am lucky that it's

isolated to one area right now. Overall, I'm pretty healthy and don't take any

maintenance meds for anything else, so I consider myself to be very lucky.

> >

> > But then… right after Thanksgiving, I decided to lose a few pounds and try

to get my stomach problems in order (which in my mind surely must have been

caused by eating too much), so I joined a popular weight loss group, admittedly

in a moment of insanity. I started eating more low-fat foods and " franken "

cheeses, etc., lots of diet foods. Of course, my symptoms escalated, but I was

still clueless. I went to my newly selected Nurse Practitioner for the symptoms

and she told me to increase my fiber and to do it by drinking a commercial

powdered fiber mix. I decided that if I was going to eat a high fiber diet, that

I should do it with foods instead of a powdered mix, so I went totally vegan and

starting eating soy yogurt and cheeses and meat subs, high fiber grains and

brown rice, pistachios, etc., getting 35 to 40g fiber per day. As you already

know, I got so much worse and although my life was already so small because of

my need to be in the bathroom all the time. I became basically isolated, having

12-14 episodes of explosive diarrhea per day. I still didn't make the connection

to my diet because my NP kept saying to eat more fiber. I've missed several days

of work since January 5, usually two or three days at a time. During my last

sick leave, my NP finally ordered blood work to check for celiac (maybe Crohn's?

is that detectable through blood test?) and fecal tests to check for bacteria. I

was dehydrated so the blood draw took forever. The NP still didn't suggest any

dietary changes. My blood work and fecal tests all came back normal, and on the

paperwork, it basically said you're normal so don't come back.

> >

> > Thank goodness a co-worker figured out that I was having a problem. She

quietly left BTVC plus a couple of other books on my desk, but BTVC was the one

that made the most sense to me. The next day, I started SCD and even in this

short period of time, I feel so much better. I'm still struggling with the

mental shift from vegan to carnivore, but hey, I'm highly motivated. (I'm

mourning some of my fave foods.) My biggest concern is that I'm still

undiagnosed. Even though I've already seen improvement, I'm scared that my

self-diagnosis is wrong. My question is… is there anyone else who remains

undiagnosed? I don't have a lot of faith in the medical profession about this

disease anyway, but still, I'd like to know what is really wrong. Looking back,

I've been dealing with this in various stages since I was 14 or 15 and my Mom

also had the exact same problems, which were also undiagnosed. Thanks for

listening/reading. I'll be lurking around the board reading as much as I can.

> >

>

[Guest guest]

I wouldn't worry too hard about being undiagnosed. You gave the

medical people ample opportunities and they didn't come through with

a diagnosis. And anyhow, now you are on the diet you are starting to

feel better, so as long as that continues, how much does it really

matter? I am pretty much self-diagnosed and I just had to figure it

out for myself long ago. Then my doctors (very good ones) went along

with it because (I suppose) it made sense to them. Why not just

continue with the diet and see what happens?

[Guest guest]

Hey Gwen-

The die-off that I experienced was flu-like symptoms, nausea and hyperness

(almost like a sugar high) when I consumed bananas or grape juice from like day

3-6. Eventually that stuff calmed down, now I'm just dealing with weakness

especially in my legs where I need to be off my feet and a little brain foggy.

As for cravings, I did crave bananas when I cooked them to make banana pancakes,

and I thought about bread as I was falling asleep a lot...but nothing too

terrible. You'll have to ask someone else about what to expect.

I think you'll be okay if you want to lose weight. First of all, no sugar or

bread products! I have the exact opposite problem, which I'm really worried

about. I'm already underweight. Good thing I can eat bananas and avocados, thats

keeping me above water right now. I think if you use honey and fruit juice

sparingly you won't have trouble losing weight. Eat lots of well cooked veggies

to fill you up. Don't eat nut flour/but butter for a while (it's an advanced

food anyway). Eat lots of carrot chicken soup and skim the fat on the top.

With your limited storage space, my advice is to store your food in small mason

jars instead of all the different sized tupperwares, they take up too much

space. Do you have a stove in the RV? Because if you don't I'd say maybe get a

crockpot - you can use this to make the chicken soup, the yogurt, apparently you

can bake things in it too. I've never used it myself, but its pretty versatile.

Have you done the intro diet? Looked at the stages on pecanbread.com? From the

tons of internet lurking I've done, the most successful cases are people who do

the intro and then introduce one food at a time, starting with well cooked

veggies and fruits - make sure you don't overload on meat! That made me more

constipated, blaaah.

My plan is to stick with about 3-4 veggies, applesauce, bananas and avocados for

fruits and try to vary the meats as much as possible (don't forget fish!) I

want to do this for a couple more weeks to kind of stabalize on the diet before

adding new foods. If there's one thing to remember, it's to go slow! I

understand the worry about wanting to try all the foods for variety, but as long

as your diet is balanced I think you should try to stick it out and stay on

Stage 1 fro 3-4 weeks (don't quote me, it just makes sense to me).

At about Day 5, you can add the yogurt or probiotics. I have a real allergy to

dairy, which SUCKS because I really want to try the goat yogurt, because

apparently it's awesome. If you think you can tolerate it, go for it! But go

slow, try one teaspoon the first day. Oh that's another thing, when you intro

foods, you're supposed to start out with a very small amount to see if you

tolerate it. Since I can't do dairy I'm going to intro almond milk yogurt

soon to add calories but also to see if I do better than on the acidophilus

pills.

Oh and one last thing. Two great resources for SCD products:

http://www.giprohealth.com/ and http://www.digestivewellness.com/

I have tons more SCD resources bookmarked and like 5 word docs of recipes, so I

can definitely help you out with that kind of stuff

Let me know how everything goes!

~Ellen

> > >

> > > I'm brand new to this board and SCD. Just started last Wednesday, April

21, 2010. I'm grateful to find this group. I apologize for the length of this

message.

> > >

> > > I have been dealing with ongoing and escalating symptoms for years, but

remained undiagnosed. Over the years, I've moved a lot, so I've had access to

various doctors. Even though I've presented with symptoms to multiple doctors,

no one has ever said to do anything other than stop stressing, eat more fiber,

and drink more water. A couple suggested medications, but I never followed

through. (No insurance during that time was a huge factor in that decision.) I

really was clueless and remained kind of disconnected, never putting all my

symptoms together and my idea of a " healthy " diet was eating lots of complex

carbs with a little bit of meat, if any, and not much fat. I was diagnosed with

lupus in 1991, but I've been in remission for 15 years following 2 years of

acupuncture and lots of self-care. I have psoriasis, too, but am lucky that it's

isolated to one area right now. Overall, I'm pretty healthy and don't take any

maintenance meds for anything else, so I consider myself to be very lucky.

> > >

> > > But then… right after Thanksgiving, I decided to lose a few pounds and try

to get my stomach problems in order (which in my mind surely must have been

caused by eating too much), so I joined a popular weight loss group, admittedly

in a moment of insanity. I started eating more low-fat foods and " franken "

cheeses, etc., lots of diet foods. Of course, my symptoms escalated, but I was

still clueless. I went to my newly selected Nurse Practitioner for the symptoms

and she told me to increase my fiber and to do it by drinking a commercial

powdered fiber mix. I decided that if I was going to eat a high fiber diet, that

I should do it with foods instead of a powdered mix, so I went totally vegan and

starting eating soy yogurt and cheeses and meat subs, high fiber grains and

brown rice, pistachios, etc., getting 35 to 40g fiber per day. As you already

know, I got so much worse and although my life was already so small because of

my need to be in the bathroom all the time. I became basically isolated, having

12-14 episodes of explosive diarrhea per day. I still didn't make the connection

to my diet because my NP kept saying to eat more fiber. I've missed several days

of work since January 5, usually two or three days at a time. During my last

sick leave, my NP finally ordered blood work to check for celiac (maybe Crohn's?

is that detectable through blood test?) and fecal tests to check for bacteria. I

was dehydrated so the blood draw took forever. The NP still didn't suggest any

dietary changes. My blood work and fecal tests all came back normal, and on the

paperwork, it basically said you're normal so don't come back.

> > >

> > > Thank goodness a co-worker figured out that I was having a problem. She

quietly left BTVC plus a couple of other books on my desk, but BTVC was the one

that made the most sense to me. The next day, I started SCD and even in this

short period of time, I feel so much better. I'm still struggling with the

mental shift from vegan to carnivore, but hey, I'm highly motivated. (I'm

mourning some of my fave foods.) My biggest concern is that I'm still

undiagnosed. Even though I've already seen improvement, I'm scared that my

self-diagnosis is wrong. My question is… is there anyone else who remains

undiagnosed? I don't have a lot of faith in the medical profession about this

disease anyway, but still, I'd like to know what is really wrong. Looking back,

I've been dealing with this in various stages since I was 14 or 15 and my Mom

also had the exact same problems, which were also undiagnosed. Thanks for

listening/reading. I'll be lurking around the board reading as much as I can.

> > >

> >

>

[Guest guest]

At 08:13 PM 4/24/2010, you wrote:

'Til then, I have an RV-sized

fridge, which leaves little room for extras. I do have a dorm fridge in

my office where I can store some additional things. It's certainly time

to get creative.

Yep. I lost somewhere around $12,000 in SCD foods that I'd made myself

when my power was off for five weeks after Hurricane Katrina. (Hey, the

HOUSE and the BOOKS were here! Which is more than a bunch of my friends

could say!)

For a number of months after that, I had dicey power -- no telling when I

would have it, and when I would not, and a 4 cu ft dorm fridge to work

out of because there were so MANY people replacing stuff that there were

waiting lists to order refrigerators and freezers.

I determined that a toaster oven and a Foreman style grill were an

SCDer's best friend. I also have meals that can be prepared in one or two

frying pans.

So, it can be done, even when you're on the run!

—

Marilyn

New

Orleans, Louisiana, USA

Undiagnosed IBS since 1976, SCD since 2001

Darn Good SCD Cook

No Human Children

Shadow & Sunny Longhair Dachshund

Babette the Foundling Beagle

[Guest guest]

>

> Day 12... great! I've done some crazy diets and food eliminations myself. I

really was brainwashed into thinking that eating whole grains was the answer to

everything. Thank you so much for posting and for the encouragement. I've been

in counseling - I'm lucky that I work for a university and I'm a student so

counseling is free - and my counselor just insisted that I get back in front of

the doctor and try to get a diagnosis. For a long time, I really believed that I

was stressing myself into these symptoms until she got me back on track.

>

> I assume that die-off symptoms are the fog/lethargy/blahs/depression that

occur when the gut's bad stuff starts screaming to be fed? I am not looking

forward to that, but I have a most understanding boss and plenty of sick leave

left, so I'm keeping that in my back pocket.

I too was moderately to severely depressed for decades, and then about 6 months

into SCD, I realised one morning that I felt good. And then I felt that this

must be what other people go through life feeling. And then I had this

overwhelming feeling of having been cheated of so much happiness for so many

years!!!

> One of my issues is managing space. My husband and I live in our motorhome out

here because I work for a grant and my job is temporary (ends in September). If

I get picked up by an institutional department at the university, we will do

something different. 'Til then, I have an RV-sized fridge, which leaves little

room for extras. I do have a dorm fridge in my office where I can store some

additional things. It's certainly time to get creative.

I live in the UK, and we usually have little bitty fridges, with teeny

glove-compartment sized freezers, and very little space in the kitchen. Very

frustrating, especially when I have a ginormous fridge back in Canada that my

tenants get to enjoy! Looking on the bright side, it does force you to eat

freshly prepared food, so the turnover is fairly high, and the chance of

unhealthy bacteria growing on your food and potentially hindering your healing

is decreased. Is there anywhere you could possibly squeeze in a vertical

freezer? (Mine's in my dining room.)

I also had a variety of symptoms for decades, and mostly they were blamed on

stress, but nothing specific could be found. It wasn't until I had the colitis

body-dissolving symptoms that I was finally diagnosed. And promised that all

that I could look forward to was a lifetime on drugs, a yearly (or more) flare,

possible surgery and a significantly increased risk of cancer. My GI also

declared that diet has no effect whatsoever. So 4 and 1/2 years on: I'm the

healthiest I've ever been, I have a splendid and extremely healthy 2 1/2 year

old (who is also mostly on SCD), and I have only had a couple of minor flares

and 1 slightly heavier one, all controlled by SCD. I suspect I'll be on SCD for

the rest of my life - much of which will be spent in a kitchen! But at least

I'll have the strength to do it, and then spend the rest of my time living, and

not just barely existing.

Congratulations for finding SCD and making the decision to start on this

journey. It may be a long one, but its a very healthy, happy one!

Licia

colitis/SCD feb 2006

no meds since july 2006

[Guest guest]

I also developed " anxiety " like symptoms before getting the GI diagnosis. It was

strange because it really was not classic depression or anxiety. I never felt

sad or panicky, just not right. When my GI symptoms got worse, I felt even more

" off " emotionally. One year on SCD and I don't feel that way at all. I am now

convinced of the mind-gut connection, and the leaky-gut theory.

My GI never looked into the possibility of a vitamin deficiency, but I saw my

gyn doc to ask about any connection of GI problems and hormones. On a whim she

ordered a vitamin D level and I was deficient, and I was treated for it. Vit D

deficiency is linked to depression.

PJ

> >

> > Day 12... great! I've done some crazy diets and food eliminations myself. I

really was brainwashed into thinking that eating whole grains was the answer to

everything. Thank you so much for posting and for the encouragement. I've been

in counseling - I'm lucky that I work for a university and I'm a student so

counseling is free - and my counselor just insisted that I get back in front of

the doctor and try to get a diagnosis. For a long time, I really believed that I

was stressing myself into these symptoms until she got me back on track.

> >

> > I assume that die-off symptoms are the fog/lethargy/blahs/depression that

occur when the gut's bad stuff starts screaming to be fed? I am not looking

forward to that, but I have a most understanding boss and plenty of sick leave

left, so I'm keeping that in my back pocket.

>

> I too was moderately to severely depressed for decades, and then about 6

months into SCD, I realised one morning that I felt good. And then I felt that

this must be what other people go through life feeling. And then I had this

overwhelming feeling of having been cheated of so much happiness for so many

years!!!

>

> > One of my issues is managing space. My husband and I live in our motorhome

out here because I work for a grant and my job is temporary (ends in September).

If I get picked up by an institutional department at the university, we will do

something different. 'Til then, I have an RV-sized fridge, which leaves little

room for extras. I do have a dorm fridge in my office where I can store some

additional things. It's certainly time to get creative.

>

> I live in the UK, and we usually have little bitty fridges, with teeny

glove-compartment sized freezers, and very little space in the kitchen. Very

frustrating, especially when I have a ginormous fridge back in Canada that my

tenants get to enjoy! Looking on the bright side, it does force you to eat

freshly prepared food, so the turnover is fairly high, and the chance of

unhealthy bacteria growing on your food and potentially hindering your healing

is decreased. Is there anywhere you could possibly squeeze in a vertical

freezer? (Mine's in my dining room.)

>

> I also had a variety of symptoms for decades, and mostly they were blamed on

stress, but nothing specific could be found. It wasn't until I had the colitis

body-dissolving symptoms that I was finally diagnosed. And promised that all

that I could look forward to was a lifetime on drugs, a yearly (or more) flare,

possible surgery and a significantly increased risk of cancer. My GI also

declared that diet has no effect whatsoever. So 4 and 1/2 years on: I'm the

healthiest I've ever been, I have a splendid and extremely healthy 2 1/2 year

old (who is also mostly on SCD), and I have only had a couple of minor flares

and 1 slightly heavier one, all controlled by SCD. I suspect I'll be on SCD for

the rest of my life - much of which will be spent in a kitchen! But at least

I'll have the strength to do it, and then spend the rest of my time living, and

not just barely existing.

>

> Congratulations for finding SCD and making the decision to start on this

journey. It may be a long one, but its a very healthy, happy one!

>

> Licia

> colitis/SCD feb 2006

> no meds since july 2006

>

[Guest guest]

One of the things that has helped me a great deal mentally, in addition to the diet, is meditation--and yoga if you can manage it.Meditation has been great in calming my mind *and* gut and I try to do it daily, especially in the evenings to release tension from the day.

Jon Kabat-Zinn has a great set of meditation/gentle yoga CDs that you might want to look into. --

 

Day 12... great! I've done some crazy diets and food eliminations myself. I really was brainwashed into thinking that eating whole grains was the answer to everything. Thank you so much for posting and for the encouragement. I've been in counseling - I'm lucky that I work for a university and I'm a student so counseling is free - and my counselor just insisted that I get back in front of the doctor and try to get a diagnosis. For a long time, I really believed that I was stressing myself into these symptoms until she got me back on track.

I assume that die-off symptoms are the fog/lethargy/blahs/depression that occur when the gut's bad stuff starts screaming to be fed? I am not looking forward to that, but I have a most understanding boss and plenty of sick leave left, so I'm keeping that in my back pocket.

I know most people lose weight with the diseases here, but I did not. I need to lose about 15 pounds and I'm a little concerned about gaining.

One of my issues is managing space. My husband and I live in our motorhome out here because I work for a grant and my job is temporary (ends in September). If I get picked up by an institutional department at the university, we will do something different. 'Til then, I have an RV-sized fridge, which leaves little room for extras. I do have a dorm fridge in my office where I can store some additional things. It's certainly time to get creative.

Do you or did you have sugar cravings? Given that your diet was already pretty restricted, maybe not. I was on a sugar binge just before I started SCD. I pretty much figured " what the heck " since no matter what I ate, it seemed to upset my stomach.

Thanks for the advice and thanks for listening. It sounds like you are on the road to recovery. I hope that is the case for you.

Gwen

> >

> > I'm brand new to this board and SCD. Just started last Wednesday, April 21, 2010. I'm grateful to find this group. I apologize for the length of this message.

> >

> > I have been dealing with ongoing and escalating symptoms for years, but remained undiagnosed. Over the years, I've moved a lot, so I've had access to various doctors. Even though I've presented with symptoms to multiple doctors, no one has ever said to do anything other than stop stressing, eat more fiber, and drink more water. A couple suggested medications, but I never followed through. (No insurance during that time was a huge factor in that decision.) I really was clueless and remained kind of disconnected, never putting all my symptoms together and my idea of a " healthy " diet was eating lots of complex carbs with a little bit of meat, if any, and not much fat. I was diagnosed with lupus in 1991, but I've been in remission for 15 years following 2 years of acupuncture and lots of self-care. I have psoriasis, too, but am lucky that it's isolated to one area right now. Overall, I'm pretty healthy and don't take any maintenance meds for anything else, so I consider myself to be very lucky.

> >

> > But then… right after Thanksgiving, I decided to lose a few pounds and try to get my stomach problems in order (which in my mind surely must have been caused by eating too much), so I joined a popular weight loss group, admittedly in a moment of insanity. I started eating more low-fat foods and " franken " cheeses, etc., lots of diet foods. Of course, my symptoms escalated, but I was still clueless. I went to my newly selected Nurse Practitioner for the symptoms and she told me to increase my fiber and to do it by drinking a commercial powdered fiber mix. I decided that if I was going to eat a high fiber diet, that I should do it with foods instead of a powdered mix, so I went totally vegan and starting eating soy yogurt and cheeses and meat subs, high fiber grains and brown rice, pistachios, etc., getting 35 to 40g fiber per day. As you already know, I got so much worse and although my life was already so small because of my need to be in the bathroom all the time. I became basically isolated, having 12-14 episodes of explosive diarrhea per day. I still didn't make the connection to my diet because my NP kept saying to eat more fiber. I've missed several days of work since January 5, usually two or three days at a time. During my last sick leave, my NP finally ordered blood work to check for celiac (maybe Crohn's? is that detectable through blood test?) and fecal tests to check for bacteria. I was dehydrated so the blood draw took forever. The NP still didn't suggest any dietary changes. My blood work and fecal tests all came back normal, and on the paperwork, it basically said you're normal so don't come back.

> >

> > Thank goodness a co-worker figured out that I was having a problem. She quietly left BTVC plus a couple of other books on my desk, but BTVC was the one that made the most sense to me. The next day, I started SCD and even in this short period of time, I feel so much better. I'm still struggling with the mental shift from vegan to carnivore, but hey, I'm highly motivated. (I'm mourning some of my fave foods.) My biggest concern is that I'm still undiagnosed. Even though I've already seen improvement, I'm scared that my self-diagnosis is wrong. My question is… is there anyone else who remains undiagnosed? I don't have a lot of faith in the medical profession about this disease anyway, but still, I'd like to know what is really wrong. Looking back, I've been dealing with this in various stages since I was 14 or 15 and my Mom also had the exact same problems, which were also undiagnosed. Thanks for listening/reading. I'll be lurking around the board reading as much as I can.

> >

>