RE: CD, lactose, etc diet plans

[Guest guest]

I don't disagree with any of your premises. Congratulations on figuring out what works for your family.

My daughter uses the Specific Carbohydate Diet. She has other autoimmune problems, but not, it seems, CD.

H.**************Get fantasy football with free live scoring. Sign up for FanHouse Fantasy Football today. (http://www.fanhouse.com/fantasyaffair?ncid=aolspr00050000000020)

[Guest guest]

My daughter's experience may not be all that relevant to your daughter's, as she's 40. I don't have much involvement in just what how closely she follows the diet. I know that for a few months she was extremely adherent; now she feels she can afford some flexibility.

She has chronic fatigue syndrome (CFIDS), which led to a considerable weight increase. She also has ovarian cyst syndrome, which affects about 10% of women. She's lost quite a lot of weight on the diet, and her OCS symptoms lessen considerably when she is very careful with the Specific Carbohydrate diet.

She developed CFIDS at 17 and has been "officially" disabled from it from many years. In the past few months, she has been able to exercise for the first time. An exercise day often is followed by a day of being unable to do anything at all, however. This isn't the usual "after-exercise" exhaustion, but a completely debilitating, incapacitating, brain-fog, wipe-out. But, she keeps going, wanting to make the most of this time that allows her to use her body.

H.

In a message dated 7/29/08 12:35:43 PM, melbatavia@... writes:

I'd be very interested to know how it's going with your daughter and the SCD. We haven't made the leap yet; but I'd love any tips/advice/I'd be very interested to know how it's going with your daughter and the SCD. We haven't made the leap yet;

Thanks again.

 

mb

 

------------------------<wbr>-- Original mes---

From: flatcat9@...

I don't disagree with any of your premises. Congratulations on figuring out what works for your family.

My daughter uses the Specific Carbohydate Diet. She has other autoimmune problems, but not, it seems, CD.

H.

**************

Get fantasy football with free live scoring. Sign up for FanHouse Fantasy Football today.

(http://www.(http://w(http://www.<wbr(http://www.<wbr(http://www.

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[Guest guest]

I'd be very interested to know how it's going with your daughter and the SCD. We haven't made the leap yet; but I'd love any tips/advice/suggestions you have. Meg is open to anything at this point. Oh yeah, she's 17, diagnosed with CD at age 12.

Thanks again.

mb

-------------- Original message -------------- From: flatcat9@...

I don't disagree with any of your premises. Congratulations on figuring out what works for your family.My daughter uses the Specific Carbohydate Diet. She has other autoimmune problems, but not, it seems, CD.H.**************Get fantasy football with free live scoring. Sign up for FanHouse Fantasy Football today.(http://www.fanhouse.com/fantasyaffair?ncid=aolspr00050000000020)

[Guest guest]

My heart just sank after reading about your daughter. She's still your baby, and I know that I'm haunted by things I could've done when Meg was little, stuff I 'should' have noticed. Your daughter is actually not that different because she was forced to deal with CFIDS as a teenager. Anything out of the mainstream can be so isolating; and people don't get that it's just not about your child; the whole family is affected.

So when I read some of these posts about not being able to go to this or that restaurant or whatever, I think, 'well, what would you rather have? what other condition would you trade this one for? I know some readers get miffed at me for being a little too blunt sometimes; but I see Meg living with this, thriving for the most part, dealing with setbacks (we're on our way in 10 minutes to UCSF to see a new pediatric gastro guy since our other guy left), keeping her food diary. I understand that this site is therapy and we need to complain...god knows...I've had some pretty wonderful screaming sessions alone in my car. And I really am grateful for all the wonderful advice from everyone. If not for all of you, I couldn't possibly have all the information I do.

God bless this site and the SCD site. I mean this from the bottom of my heart,

Wishing everyone well,

mb

--

-------------- Original message -------------- From: flatcat9@...

My daughter's experience may not be all that relevant to your daughter's, as she's 40. I don't have much involvement in just what how closely she follows the diet. I know that for a few months she was extremely adherent; now she feels she can afford some flexibility.She has chronic fatigue syndrome (CFIDS), which led to a considerable weight increase. She also has ovarian cyst syndrome, which affects about 10% of women. She's lost quite a lot of weight on the diet, and her OCS symptoms lessen considerably when she is very careful with the Specific Carbohydrate diet. She developed CFIDS at 17 and has been "officially" disabled from it from many years. In the past few months, she has been able to exercise for the first time. An exercise day often is followed by a day of being unable to do anything at all, however. This isn't the usual "after-exercise" exhaustion, but a comple

tely debilitating, incapacitating, brain-fog, wipe-out. But, she keeps going, wanting to make the most of this time that allows her to use her body.H.In a message dated 7/29/08 12:35:43 PM, melbataviacomcast (DOT) net writes:

I'd be very interested to know how it's going with your daughter and the SCD. We haven't made the leap yet; but I'd love any tips/advice/I'd be very interested to know how it's going with your daughter and the SCD. We haven't made the leap yet;Thanks again. mb ------------------------<wbr>-- Original mes---From: flatcat9aol (DOT) FromI don't disagree with any of your premises. Congratulations on figuring out what works for your family.My daughter uses the Specific Carbohydate Diet. She has other autoimmune problems, but not, it seems, CD.H.**************Get fan

tasy football with free live scoring. Sign up for FanHouse Fantasy Football today.(http://www.(http://w(http://www.<wbr(http://www.<wbr(http://www.**************Get fantasy football with free live scoring. Sign up for FanHouse Fantasy Football today.(http://www.fanhouse.com/fantasyaffair?ncid=aolspr00050000000020)

[Guest guest]

Thank you for suggesting this. Yes, she has.

Also, I should have been clearer that she doesn't necessarily attribute her recent improvement to the Specific Carbohydrate diet. It may be helping, or it may be coincidence -- she says she has no way of knowing, but that she might as well continue with it.

H.

In a message dated 7/29/08 2:28:38 PM, skweiner@... writes:

On Tue, Jul 29, 2008 at 12:48 PM, <flatcat9@...> wrote:

An exercise day often is followed by a day of being unable to do

> anything at all, however. This isn't the usual "after-exercise" exhaustion,

> but a completely debilitating, incapacitating, brain-fog, wipe-out.

Has your daughter had her adrenals checked?

**************Get fantasy football with free live scoring. Sign up for FanHouse Fantasy Football today. (http://www.fanhouse.com/fantasyaffair?ncid=aolspr00050000000020)

[Guest guest]

This statement jumps out at me:

On Tue, Jul 29, 2008 at 12:48 PM, <flatcat9@...> wrote:

An exercise day often is followed by a day of being unable to do

> anything at all, however. This isn't the usual " after-exercise " exhaustion,

> but a completely debilitating, incapacitating, brain-fog, wipe-out.

Has your daughter had her adrenals checked?

some sites with good info:

http://www.drlam.com/a3r_brief_in_doc_format/adrenal_fatigue.cfm

http://www.drkaslow.com/html/adrenal_insufficiency.html

http://www.stopthethyroidmadness.com/adrenal-info

http://www.drrind.com/scorecardmatrix.asp

[Guest guest]

For megroff10: In the past year I've seen Dr. Weissiger at UCSF Parnassus. He did an endoscopy (an found no signs at all of CD -- I've healed that well!) He's okay, clearly intelligent. I don't know quite what to say about how I like him, whether things worked out the best they could have. We didn't seem to understand each other very well, overall. I was diagnosed several years ago at Kaiser SF; this was a follow-up when I changed my care to UCSF. He may be absolutely great and I just didn't ask the right questions in the right way. Part of the problem may have been a rather slip-shod "floating" staff; they were going through changes at the time.

I was unsettled by his telling me (if I understood him correctly) that a certain blood test would tell me if I had CD even if I had been eating completely GF for years. I'm not sure that statement is generally accepted.

In the same department, I see Dr. n s. She's a very, very high-level hepatologist, helpful in every area of my medical treatment. If you ever need a hepatologist for something serious, fight to be accepted in her practice. (I have autoimmune hepatitis.)

You ask about my daughter. Yes, my daughter was an athlete and a scholar at 17, in architecture school at Rice (her parents' line of work, also). Her life seemed one of limitless opportunity; she was the golden girl. Since she developed CFIDS, everything has been a challenge for her. But, she's a tough person with a good heart. Her life just went in totally unforeseen directions afterward, but who knows if the expected kind of life truly would have been better. My regret is simply that I didn't earlier realize what she needed, could support she could have used -- but, as she says, she didn't know, either. Back then, no one understood at all what CFIDS was about. At one time, we sent her to Baylor to a specialist, and we were told she had an immediately life-threatening, rare blood disease, and she must begin a risky, experimental, and wildly expensive course of treatment immediately. Any delay, we were told, could be fatal. We scurried around to find the money. Then we learned that the lab had switched her results with someone else's. We were reprieved, but we still wonder what other person, someone else's dearly loved, was given that dreadful news, a couple of weeks late at that.

H.

In a message dated 7/29/08 4:07:47 PM, megroff01@... writes:

ase let me know the name of your UCSF GI and if you liked him so far?

From: <st1>celiacba <st1>celiac <s [mailto: [mailto:<st1> [mailto:<st [m] On Behalf Of melbatavia@...

Sent: Tuesday, July 29, 2008 1:45 PM

<st1>celiacba <st1>celiac <s

Subject: Re: [ ] CD, lactose, etc diet plans

My heart just sank after reading about your daughter. She's still your baby, and I know that I'm haunted by things I could've done when Meg was little, stuff I 'should' have noticed. Your daughter is actually not that different because she was forced to deal with CFIDS as a teenager. Anything out of the mainstream can be so isolating; and people don't get that it's just not about your child; the whole family is affected.

So when I read some of these posts about not being able to go to this or that restaurant or whatever, I think, 'well, what would you rather have? what other condition would you trade this one for? I know some readers get miffed at me for being a little too blunt sometimes; but I see Meg living with this, thriving for the most part, dealing with setbacks (we're on our way in 10 minutes to UCSF to see a new pediatric gastro guy since our other guy left), keeping her food diary. I understand that this site is therapy and we need to complain...god knows...I've had some pretty wonderful screaming sessions alone in my car.  And I really am grateful for all the wonderful advice from everyone. If not for all of you, I couldn't possibly have all the information I do.

God bless this site and the SCD site. I mean this from the bottom of my heart,

Wishing everyone well,

mb

**************Get fantasy football with free live scoring. Sign up for FanHouse Fantasy Football today. (http://www.fanhouse.com/fantasyaffair?ncid=aolspr00050000000020)

[Guest guest]

MB, excuse me; I read too quickly and thought you were speaking of my daughter, who does not have CD (as far as we can tell). She has Chronic Fatigue Syndrome, which is generally believed to be another autoimmune disorder, with considerable associated pain, and overian polycystic syndrome.

But, no CD.

H.**************Get fantasy football with free live scoring. Sign up for FanHouse Fantasy Football today. (http://www.fanhouse.com/fantasyaffair?ncid=aolspr00050000000020)

[Guest guest]

Please let me know the name of your UCSF

GI and if you liked him so far?

From: [mailto: ] On Behalf Of melbatavia@...

Sent: Tuesday, July 29, 2008 1:45

PM

Subject: Re: [ ] CD,

lactose, etc diet plans

My heart just sank after reading about your daughter. She's still your

baby, and I know that I'm haunted by things I could've done when Meg was

little, stuff I 'should' have noticed. Your daughter is actually not that

different because she was forced to deal with CFIDS as a teenager. Anything out

of the mainstream can be so isolating; and people don't get that it's just not

about your child; the whole family is affected.

So when I read some of these posts about not being able to go to this

or that restaurant or whatever, I think, 'well, what would you rather have?

what other condition would you trade this one for? I know some readers get

miffed at me for being a little too blunt sometimes; but I see Meg living with

this, thriving for the most part, dealing with setbacks (we're on our way in 10

minutes to UCSF to see a new pediatric gastro guy since our other guy left),

keeping her food diary. I understand that this site is therapy and we need to

complain...god knows...I've had some pretty wonderful screaming sessions alone

in my car. And I really am grateful for all the wonderful advice from

everyone. If not for all of you, I couldn't possibly have all the information I

do.

God bless this site and the SCD site. I mean this from the bottom of my

heart,

Wishing everyone well,

mb

--

-------------- Original message --------------

From: flatcat9aol

My daughter's

experience may not be all that relevant to your daughter's, as she's 40. I

don't have much involvement in just what how closely she follows the diet. I

know that for a few months she was extremely adherent; now she feels she can

afford some flexibility.

She has chronic fatigue syndrome (CFIDS), which led to a considerable weight

increase. She also has ovarian cyst syndrome, which affects about 10% of women.

She's lost quite a lot of weight on the diet, and her OCS symptoms lessen

considerably when she is very careful with the Specific Carbohydrate diet.

She developed CFIDS at 17 and has been " officially " disabled from it

from many years. In the past few months, she has been able to exercise for the

first time. An exercise day often is followed by a day of being unable to do

anything at all, however. This isn't the usual " after-exercise "

exhaustion, but a comple tely debilitating, incapacitating, brain-fog,

wipe-out. But, she keeps going, wanting to make the most of this time

that allows her to use her body.

H.

In a message dated 7/29/08 12:35:43 PM, melbataviacomcast (DOT) net writes:

I'd be very interested to know how it's going with your daughter and the SCD.

We haven't made the leap yet; but I'd love any tips/advice/I'd be very

interested to know how it's going with your daughter and the SCD. We haven't

made the leap yet;

Thanks again.

Â

mb

Â

------------------------<wbr>-- Original mes---

From: flatcat9aol (DOT) From

I don't disagree with any of your premises. Congratulations on figuring out

what works for your family.

My daughter uses the Specific Carbohydate Diet. She has other autoimmune

problems, but not, it seems, CD.

H.

**************

Get fan tasy football with free live scoring. Sign up for FanHouse Fantasy

Football today.

(http://www.(http://w(http://www.<wbr(http://www.<wbr(http://www.

**************

Get fantasy football with free live scoring. Sign up for FanHouse Fantasy

Football today.

(http://www.fanhouse.com/fantasyaffair?ncid=aolspr00050000000020)