Really discouraged fairly new SCDer, advice please!

December 11, 2009

Hi,

*I know this looks intimidating and long but I am feeling so discouraged, it

would mean so much if someone took the time to read this and offer a tip or two.

Thanks so much.*

Here is a little background on me:

~3 1/3 years ago I got really sick. Really, really sick. After a million tests,

lots of pain and diarrhea, was diagnosed with eosinophilic gastroenteritis (EG).

Although the longer I go, the more I believe they just diagnosed me with this

because they really didn't know what was going on. Basically my white blood

cells were attacking my insides for no known reason causing a bunch of

inflammation, pain, and the runs. They put me on prednisone and while it did

make the diarrhea stop (had been having it for over 1 month straight), I hated

how it made me feel. I tapered myself off and started doing my own research. I

spent the next few years trying different elimination diets and the like, trying

to regain health and strength back. I found a fantastic naturopath last summer

(2008) who helped me discover a bunch of food allergies that the normal western

med tests weren't showing. I eliminated gluten, dairy, soy, sugar cane, eggs,

yeast and corn and started to feel a lot better. The excruciating pain was

getting less and less and I was gaining some weight back. I continued to improve

over the past year and reached my normal weight again by the end of this summer.

My digestion was doing fantastic and I could eat anything (outside of my avoid

list) without pain; no diarrhea and I digested everything fine. I had a bad day

here and there but NOTHING like the pain before.

Until we went on vacation this past September. We went to Australia and I was

very very careful about what I ate, everything organic, prepared all my own

food. But unfortunately got salmonella from someone else who passed it on to me.

I didn't know it was salmonella at the time, just woke up with diarrhea. It was

our last week of the trip and we figured maybe my body was just stressed and I

was having a flare up. But I wasn't having the normal gut pains and sharp

cramping I get with my EG flares. We flew home and this was day 4 of diarrhea, I

saw my Dr right away but didn't get test results back showing it was salmonella

till day 8 and by then it had gotten so bad I needed antibiotics. The salmonella

was antibiotic resistant and I ended up having to take another antibiotic so had

to take 2 different kinds which really really upset my system. The diarrhea did

not stop and got worse. I got tested again and the salmonella was gone but I

believe all the stress plus the antibiotics flared my autoimmune stuff. I now

was having horrible gut cramping and EG symptoms along with the diarrhea. I then

found out about the SCD and bought the book and tried the Intro diet, got off

all my natural supplements (that I believe helped me in the past but the diet-

as I am sure you know- says get off all supplements). I did the Intro but

continued to have diarrhea and progressed too quickly to stage one and diarrhea

just continued on. I decided to be fanatical and try again. This time I fasted

for 3 days on water and fresh veg juice only and then did the intro diet for 5

days. I can only tolerate chicken and fish so that's all I had. My diarrhea

stopped. Then I moved to purred carrot. Some diarrhea came back. Then it

stopped. Then it came back. It's been kind of on and off since then. I wouldn't

say it's quite as horrible as before but I am still no where near normal. I

think tried purred carrot zucchini (peeled and de-seeded). Now I am doing

chicken, fish, purred winter squash (peeled, de-seeded), mashed banana and

purred spinach. I have been on the SCD for a little over a month now and the

book says if there is no improvement after 1 month then the diet may not help

you. I am feeling that this may be the case for me My gut pains have gotten

worse. They are constant. I would say I am not having urgent diarrhea anymore

but still frequent trips to the bathroom and nothing is formed, very loose and

undigested looking. I have added in digestive enzymes, probiotics, glutamine

powder, and crystal MSM. All SCD legal (to my knowledge).

Any tips? Advice? Am I totally missing something or doing something wrong? Or am

I impatient? Just worried it is going to keep getting worse as my quality of

life is already pretty bad now... can't get my normal life things done and

family is getting really scared.

Thanks all!

December 12, 2009

Hi, eyf749!

First off, do you have a name? We're a pretty friendly bunch around here,

but generally like to know who we're talking to!

You've had a truly rough time of it, and those blasted antibiotics can

knock your gut for a loop -- even though the antibiotics have their uses.

(As horrible as the results have been, imagine salmonella without having

the antibiotics!)

Can you tell us exactly what supplements (and what all their ingredients

are) you were taking? This will help us weed out the ones which may be

illegal or contain illegals.

Next, am I correct that you are eating chicken, fish, carrots, and

zucchini? And SCD yogurt? Or if not the yogurt, what probiotics are you

taking?

This will give us a starting point.

—

Marilyn

New

Orleans, Louisiana, USA

Undiagnosed IBS since 1976, SCD since 2001

Darn Good SCD Cook

No Human Children

Shadow & Sunny Longhair Dachshund

December 12, 2009

Hi,*I know this looks intimidating and long but I am feeling so discouraged, it would mean so much if someone took the time to read this and offer a tip or two. Thanks so much.*Hello and welcome to the BTVS-SCD group, but sorry youhave to be here, to paraphrase Marilyn. Here is a little background on me:~3 1/3 years ago I got really sick. Really, really sick. After a million tests, lots of pain and diarrhea, was diagnosed with eosinophilic gastroenteritis (EG). Although the longer I go, the more I believe they just diagnosed me with this because they really didn't know what was going on. Basically my white blood cells were attacking my insides for no known reason causing a bunch of inflammation, pain, and the runs. They put me on prednisone and while it did make the diarrhea stop (had been having it for over 1 month straight), I hated how it made me feel. I tapered myself off and started doing my own research. I spent the next few years trying different elimination diets and the like, trying to regain health and strength back. I found a fantastic naturopath last summer (2008) who helped me discover a bunch of food allergies that the normal western med tests weren't showing. I eliminated gluten, dairy, soy, sugar cane, eggs, yeast and corn and started to feel a lot better. The! excruciating pain was getting less and less and I was gaining some weight back. I continued to improve over the past year and reached my normal weight again by the end of this summer. My digestion was doing fantastic and I could eat anything (outside of my avoid list) without pain; no diarrhea and I digested everything fine. I had a bad day here and there but NOTHING like the pain before.Until we went on vacation this past September. We went to Australia and I was very very careful about what I ate, everything organic, prepared all my own food. But unfortunately got salmonella from someone else who passed it on to me. I didn't know it was salmonella at the time, just woke up with diarrhea. It was our last week of the trip and we figured maybe my body was just stressed and I was having a flare up. But I wasn't having the normal gut pains and sharp cramping I get with my EG flares. We flew home and this was day 4 of diarrhea, I saw my Dr right away but didn't get test results back showing it was salmonella till day 8 and by then it had gotten so bad I needed antibiotics. The salmonella was antibiotic resistant and I ended up having to take another antibiotic so had to take 2 different kinds which really really upset my system. The diarrhea did not stop and got worse. I got tested again and the salmonella was gone but I believe all the stress plus the antibiotics! flared my autoimmune stuff. I now was having horrible gut cramping and EG symptoms along with the diarrhea. I then found out about the SCD and bought the book and tried the Intro diet, got off all my natural supplements (that I believe helped me in the past but the diet- as I am sure you know- says get off all supplements). I did the Intro but continued to have diarrhea and progressed too quickly to stage one and diarrhea just continued on. I decided to be fanatical and try again. Well that's good. This time I fasted for 3 days on water and fresh veg juice only and then did the intro diet for 5 days. I can only tolerate chicken and fish so that's all I had. My diarrhea stopped. Then I moved to purred carrot. Some diarrhea came back. Then it stopped. Then it came back. Okay - that's easy. Take carrot out of your intro diet. If an ingredient on intro isn't working for you,take it out. There is no paradigm of intro that must be adhered to. Everything is individualized. If something doesn't work for you, lose it and try something else instead. It's been kind of on and off since then. I wouldn't say it's quite as horrible as before but I am still no where near normal. I think tried purred carrot zucchini (peeled and de-seeded). Okay - so just do pureed zucchini **without** the carrot. Maybe try pureed spinach.(okay, I see below you are doing that.) Also avocado. Or peeled, deseeded cucumbers.Apple sauce? How about oils? Olive oil? Organic coconut oil?Oils are allowed on intro. Now I am doing chicken, fish, purred winte!r squash (peeled, de-seeded), mashed banana and purred spinach. I have been on the SCD for a little over a month now and the book says if there is no improvement after 1 month then the diet may not help you. I am feeling that this may be the case for me Well, but there has been improvement, from urgent diarrhea, to urgency, withpartially formed stools. The vector on that change is into positive territory. Somepeople improve amazingly fast and other people improve far more slowly. My gut pains have gotten worse. They are constant. Where in the gut is it? And can you describe the kind of pain it is. The morespecific the info, the better someone may be better to speak to it. I would say I am not having urgent diarrhea anymore but still frequent trips to the bathroom and nothing is formed, very loose and undigested looking. Well, still, that's a big step up from urgent diarrhea. As for the urgency, in some people, that can be the last symptom to go - in other words, they can have perfectstools, no other symptoms, and still experience urgency until finally that situation resolves. That may not be your situation, but it is worthwhile keeping it in mind as a data point. I have added in digestive enzymesWhich brand? , probiotics,which probiotics? Which brand and type? And how much? Somepeople need to start incredibly slowly on probiotics. A miniscule, minisculeamount because they are very sensitive to the least bit. glutamine powder, Yeah, glutamine powder is legal, but when I used it, it gave me ***bad gut pains.***It took me a little bit to realize that however, and isolate that problem. For a whileI thought my condition had deteriorated. Glutamine works great for some, and itdoes the opposite for others. So that may be your culprit right there. I'd say, lose the glutamine and see if your gut pains mitigate. and crystal MSM. I don't know what this is or does. What brand? All SCD legal (to my knowledge).Just because something is legal, doesn't mean it works for all. Keep that inmind. It sounds like after the antibiotic treatment you've been in a hyper reactivestate, so you have to be extra careful that what you are taking is working for you. It may be a legal supplement but working against you, the way the glutamine was for me. Any tips? Advice? Am I totally missing something or doing something wrong? Or am I impatient? You're definitely impatient but that is totally understandable at this point. <g>You're not doing anything wrong, you just need to adjust some things to suityour specific gut. The SCD is like a long process of getting to know how your gut reacts to things.Do you know any deep breathing or yoga breathing techniques. Or, if you arewell enough, can you attempt some yoga or other exercise. It's best to try to de-stress yourself somehow, as stress worsens the vicious cycle. Just worried it is going to keep getting worse as my quality of life is already pretty bad now... can't get my normal life things done and family is getting really scared. Well, your gut is very ill at the moment. So give yourself a bit of a break. And healing, unfortunately, may take a while, too. That's a sober assessment. What's your name btw? Mara

December 12, 2009

Hi,

I would also encourage you to hang in there. Last spring I was given the

diagnosis of mild UC. My doctor initially thought it was an infection and put me

on Flagyl for a week. It was only after this that I experienced a full flare

that lasted until I was on SCD for several weeks.

Like you, I was terrified. I wanted my life back. I could hardly function and I

felt really bad for my kids. I know how you feel. I'm sharing this story because

I think the salmonella and the antibiotics can really unglue you, and this

affects not only the GI tract but your mood as well.

I encourage you to stay on SCD and adjust it so it works for you. Keep a food

diary and with the advice of everyone here, find some foods that you tolerate.

Just because something is legal does not mean it's for you. You may tolerate it

later. It took me 7 months to be able to eat cooked carrots.

Go slowly- trial and error.The improvements you see on SCD are slow, but they

add up.

PJ

>

> > Hi,

> > *I know this looks intimidating and long but I am feeling so discouraged, it

would mean so much if someone took the time to read this and offer a tip or two.

Thanks so much.*

>

> Hello and welcome to the BTVS-SCD group, but sorry you

> have to be here, to paraphrase Marilyn.

>

> > Here is a little background on me:

> > ~3 1/3 years ago I got really sick. Really, really sick. After a million

tests, lots of pain and diarrhea, was diagnosed with eosinophilic

gastroenteritis (EG). Although the longer I go, the more I believe they just

diagnosed me with this because they really didn't know what was going on.

Basically my white blood cells were attacking my insides for no known reason

causing a bunch of inflammation, pain, and the runs. They put me on prednisone

and while it did make the diarrhea stop (had been having it for over 1 month

straight), I hated how it made me feel. I tapered myself off and started doing

my own research. I spent the next few years trying different elimination diets

and the like, trying to regain health and strength back. I found a fantastic

naturopath last summer (2008) who helped me discover a bunch of food allergies

that the normal western med tests weren't showing. I eliminated gluten, dairy,

soy, sugar cane, eggs, yeast and corn and started to feel a lot better. The!

> > excruciating pain was getting less and less and I was gaining some weight

back. I continued to improve over the past year and reached my normal weight

again by the end of this summer. My digestion was doing fantastic and I could

eat anything (outside of my avoid list) without pain; no diarrhea and I digested

everything fine. I had a bad day here and there but NOTHING like the pain

before.

> > Until we went on vacation this past September. We went to Australia and I

was very very careful about what I ate, everything organic, prepared all my own