RE: OT: Gluten Free/Margaret

[Guest guest]

No. I haven't been diagnosed with celiac. I got tired of being chained to

the toilet and have everyone just shrug their shoulders. I'm eating

moderately gluten free and the " runs " have slowed down. There was a point

when I was going almost 20 times a day. I would cry every time I got that

cramp that lets you know you have to go.

I have been tested in the past, but so much has happened to me the last few

years that I'm desperate. I'm experimenting right now. I see the gastro

doc in September and I will make sure to eat the gluten before I go. I may

be wrong about all of this, but I haven't spent all day today in the

bathroom.

Tigger (Ruth) in Rhode Island

2/12/02 Lap Proxy RNY

279lbs/220lbs/regain to 250lbs

3/10/05 Open Distal (60 " ) RNY

248 (Just before surgery)

114 (Lowest weight)

118 (Current weight)

140-150 (Goal)

5'5 " (height)

_____

From: Fibromyalgia_Support_Group

[mailto:Fibromyalgia_Support_Group ] On Behalf Of Margaret

Badner

Sent: Saturday, July 21, 2007 11:28 PM

To: Fibromyalgia_Support_Group

Subject: Re: OT: Gluten Free

Tigger,

Have you been diagnosed with gluten intolerance or celiac disease?

If not, it is not a good idea to go on the diet yet. If you do the

tests needed, all the tests would be negative if you are off gluten.

If you do decide to go ahead, any meat, fish, vegetable, or fruit is

fine but watch out for sauces, gravy or prepared foods. READ

LABELS. Breads and pasta are a no no unless they are made with

gluten free flours. You must be very careful about all the minor

ingredients as they frequently contain gluten. This diet can be

quite expensive. There are some frozen gluten free dinners by AMY

but be sure the box says gluten free. Also be careful of cross

contamination in factories, restaurants and salad bars, where foods

that do not contain gluten may become contaminated by foods that do

contain gluten. Any amount of gluten is too much!

I have had celiac disease for 3 years now and once you adjust, it is

not difficult at all except when eating in restaurants. However I do

spend a lot of time baking gluten free breads.

If you have any questions, feel free to ask them.

Margaret B

> Some of you sent me links to find out more about Celiac and Gluten

> Intolerance. I'm trying to do it, but it is very difficult. Can

> any of you

> help me to see what menus are like? Unfortunately, I have a lot of

> items in

> the house with Gluten and since I have no money, I really can't

> waste them.

>

>

>

>

> Can someone give me an example of their menus? I think this is

> going to

> help my intestinal problems.

>

>

[Guest guest]

If you even think you might have celiac, it is important to get the biopsy done

asap of your small intestines. That is from what I hear, the only proof positive

test there is. As celiac slowly destroys your ability to absorb food, the longer

you go, the more possible destruction. http://www.celiac.com/index.html has a

lot of information about it, there is gluten in many things one would not think

to look. Until the USFDA makes labeling mandatory, we will never know everything

that has it as they do not have to list it.

Feel better

Kathleen

Tigger wrote:

No. I haven't been diagnosed with celiac. I got tired of being chained

to

the toilet and have everyone just shrug their shoulders. I'm eating

moderately gluten free and the " runs " have slowed down. There was a point

when I was going almost 20 times a day. I would cry every time I got that

cramp that lets you know you have to go.

I have been tested in the past, but so much has happened to me the last few

years that I'm desperate. I'm experimenting right now. I see the gastro

doc in September and I will make sure to eat the gluten before I go. I may

be wrong about all of this, but I haven't spent all day today in the

bathroom.

Tigger (Ruth) in Rhode Island

2/12/02 Lap Proxy RNY

279lbs/220lbs/regain to 250lbs

3/10/05 Open Distal (60 " ) RNY

248 (Just before surgery)

114 (Lowest weight)

118 (Current weight)

140-150 (Goal)

5'5 " (height)

_____

From: Fibromyalgia_Support_Group

[mailto:Fibromyalgia_Support_Group ] On Behalf Of Margaret

Badner

Sent: Saturday, July 21, 2007 11:28 PM

To: Fibromyalgia_Support_Group

Subject: Re: OT: Gluten Free

Tigger,

Have you been diagnosed with gluten intolerance or celiac disease?

If not, it is not a good idea to go on the diet yet. If you do the

tests needed, all the tests would be negative if you are off gluten.

If you do decide to go ahead, any meat, fish, vegetable, or fruit is

fine but watch out for sauces, gravy or prepared foods. READ

LABELS. Breads and pasta are a no no unless they are made with

gluten free flours. You must be very careful about all the minor

ingredients as they frequently contain gluten. This diet can be

quite expensive. There are some frozen gluten free dinners by AMY

but be sure the box says gluten free. Also be careful of cross

contamination in factories, restaurants and salad bars, where foods

that do not contain gluten may become contaminated by foods that do

contain gluten. Any amount of gluten is too much!

I have had celiac disease for 3 years now and once you adjust, it is

not difficult at all except when eating in restaurants. However I do

spend a lot of time baking gluten free breads.

If you have any questions, feel free to ask them.

Margaret B

> Some of you sent me links to find out more about Celiac and Gluten

> Intolerance. I'm trying to do it, but it is very difficult. Can

> any of you

> help me to see what menus are like? Unfortunately, I have a lot of

> items in

> the house with Gluten and since I have no money, I really can't

> waste them.

>

>

>

>

> Can someone give me an example of their menus? I think this is

> going to

> help my intestinal problems.

>

>

[Guest guest]

Tigger,

It is not unusual for some people to decide to go on a GF diet on

their own. I know several people who have. The rational behind this

is if it helps them feel better, it must be o.k. It may well work

for you and I hope it does. A word of warning here though - if it is

necessary for you to go back on gluten in order to be tested, I

believe the minimum is 6 weeks. It is necessary to build up the

gluten in your system again. No fun at all I'm told.

There are several excellent books on the subject of celiac disease

but the one I would recommend is by a Dr H R Green who is the

director of the celiac disease center at Columbia Hospital in New

York. It is called " CELIAC DISEASE A HIDDEN EPIDEMIC. " Perhaps

your brother or his wife could find it in the library for you. It

was published in 2006.

Remember, I'm not criticizing you for what you are doing, I'm just

trying to help. I can well understand why you are doing this as I

spent 3 1/2 weeks suffering and lost 29 pounds before the Dr's

realized I had CD.

> No. I haven't been diagnosed with celiac. I got tired of being

> chained to

> the toilet and have everyone just shrug their shoulders. I'm eating

> moderately gluten free and the " runs " have slowed down. There was

> a point

> when I was going almost 20 times a day. I would cry every time I

> got that

> cramp that lets you know you have to go.

>

>

>

> I have been tested in the past, but so much has happened to me the

> last few

> years that I'm desperate. I'm experimenting right now. I see the

> gastro

> doc in September and I will make sure to eat the gluten before I

> go. I may

> be wrong about all of this, but I haven't spent all day today in the

> bathroom.

>

>

>

>

>

>

>

> Tigger (Ruth) in Rhode Island

> 2/12/02 Lap Proxy RNY

> 279lbs/220lbs/regain to 250lbs

> 3/10/05 Open Distal (60 " ) RNY

> 248 (Just before surgery)

>

> 114 (Lowest weight)

>

> 118 (Current weight)

>

> 140-150 (Goal)

>

> 5'5 " (height)

>

[Guest guest]

Thank you Kathleen - I forgot to mention those facts.

Margaret B

> If you even think you might have celiac, it is important to get the

> biopsy done asap of your small intestines. That is from what I

> hear, the only proof positive test there is. As celiac slowly

> destroys your ability to absorb food, the longer you go, the more

> possible destruction. http://www.celiac.com/index.html has a lot of

> information about it, there is gluten in many things one would not

> think to look. Until the USFDA makes labeling mandatory, we will

> never know everything that has it as they do not have to list it.

> Feel better

> Kathleen

>

> Tigger wrote:

> No. I haven't been diagnosed with celiac. I got tired of

> being chained to

> the toilet and have everyone just shrug their shoulders. I'm eating

> moderately gluten free and the " runs " have slowed down. There was a

> point

> when I was going almost 20 times a day. I would cry every time I

> got that

> cramp that lets you know you have to go.

>

> I have been tested in the past, but so much has happened to me the

> last few

> years that I'm desperate. I'm experimenting right now. I see the

> gastro

> doc in September and I will make sure to eat the gluten before I

> go. I may

> be wrong about all of this, but I haven't spent all day today in the

> bathroom.

>

[Guest guest]

I did and do not take it as criticism. As it turned out it might not be

that, but I will check with my doctor when I see him in September. I've had

others, as well, tell me that I need to eat gluten before being tested. I

didn't know about the 6 weeks and glad you said that. I'm pretty desperate

because I'm so tired of being " chained " to the toilet.

I have started to keep a diary of what I eat and when I go. I'm hoping that

will help the doc in September.

Thank you.

Tigger (Ruth) in Rhode Island

2/12/02 Lap Proxy RNY

279lbs/220lbs/regain to 250lbs

3/10/05 Open Distal (60 " ) RNY

248 (Just before surgery)

114 (Lowest weight)

118 (Current weight)

140-150 (Goal)

5'5 " (height)

_____

From: Fibromyalgia_Support_Group

[mailto:Fibromyalgia_Support_Group ] On Behalf Of Margaret

Badner

Sent: Monday, July 23, 2007 8:55 PM

To: Fibromyalgia_Support_Group

Subject: Re: OT: Gluten Free/Margaret

Tigger,

It is not unusual for some people to decide to go on a GF diet on

their own. I know several people who have. The rational behind this

is if it helps them feel better, it must be o.k. It may well work

for you and I hope it does. A word of warning here though - if it is

necessary for you to go back on gluten in order to be tested, I

believe the minimum is 6 weeks. It is necessary to build up the

gluten in your system again. No fun at all I'm told.

There are several excellent books on the subject of celiac disease

but the one I would recommend is by a Dr H R Green who is the

director of the celiac disease center at Columbia Hospital in New

York. It is called " CELIAC DISEASE A HIDDEN EPIDEMIC. " Perhaps

your brother or his wife could find it in the library for you. It

was published in 2006.

Remember, I'm not criticizing you for what you are doing, I'm just

trying to help. I can well understand why you are doing this as I

spent 3 1/2 weeks suffering and lost 29 pounds before the Dr's

realized I had CD.

> No. I haven't been diagnosed with celiac. I got tired of being

> chained to

> the toilet and have everyone just shrug their shoulders. I'm eating

> moderately gluten free and the " runs " have slowed down. There was

> a point

> when I was going almost 20 times a day. I would cry every time I

> got that

> cramp that lets you know you have to go.

>

>

>

> I have been tested in the past, but so much has happened to me the

> last few

> years that I'm desperate. I'm experimenting right now. I see the

> gastro

> doc in September and I will make sure to eat the gluten before I

> go. I may

> be wrong about all of this, but I haven't spent all day today in the

> bathroom.

>

>

>

>

>

>

>

> Tigger (Ruth) in Rhode Island

> 2/12/02 Lap Proxy RNY

> 279lbs/220lbs/regain to 250lbs

> 3/10/05 Open Distal (60 " ) RNY

> 248 (Just before surgery)

>

> 114 (Lowest weight)

>

> 118 (Current weight)

>

> 140-150 (Goal)

>

> 5'5 " (height)

>

[Guest guest]

Tigger,

I am not an authority on Celiac Disease, just a patient with 3 years

experience. I was wondering though that if not eating gluten makes

you feel better, what if you just eliminated a good bit but

definitely not all gluten? It is hidden in so many foods that it is

hard to figure out what to eat unless you have help. (dietician,

support group, or just other celiacs) You have gotten some good

recommendations on this list. If and when you are tested and

possibly diagnosed, then you have to knuckle down and get really

serious. I personally prefer to bake all my own breads as they taste

so much better but it is very time consuming. Lucky for me I have

the time. I eat no prepared foods and as my oldest daughter says,

" No ingredient that I can't pronounce the name of. " I do hope you

don't have C D, fibro is more than enough to cope with. Just wanted

you to know that it is survivable and the food can be good.

Margaret B

P.S. Pepto Bismal TABLETS are what the Dr put me on when I had the

big " D " . He felt the liquid didn't work as well.

> I did and do not take it as criticism. As it turned out it might

> not be

> that, but I will check with my doctor when I see him in September.

> I've had

> others, as well, tell me that I need to eat gluten before being

> tested. I

> didn't know about the 6 weeks and glad you said that. I'm pretty

> desperate

> because I'm so tired of being " chained " to the toilet.

>

>

>

> I have started to keep a diary of what I eat and when I go. I'm

> hoping that

> will help the doc in September.

>

>

>

> Thank you.

>

>

>

>

>

> Tigger (Ruth) in Rhode Island

> 2/12/02 Lap Proxy RNY

> 279lbs/220lbs/regain to 250lbs

> 3/10/05 Open Distal (60 " ) RNY

> 248 (Just before surgery)

>

> 114 (Lowest weight)

>

> 118 (Current weight)

>

> 140-150 (Goal)

>

> 5'5 " (height)

>

> _____

>

> From: Fibromyalgia_Support_Group

> [mailto:Fibromyalgia_Support_Group ] On Behalf Of

> Margaret

> Badner

> Sent: Monday, July 23, 2007 8:55 PM

> To: Fibromyalgia_Support_Group

> Subject: Re: OT: Gluten Free/Margaret

>

>

>

> Tigger,

> It is not unusual for some people to decide to go on a GF diet on

> their own. I know several people who have. The rational behind this

> is if it helps them feel better, it must be o.k. It may well work

> for you and I hope it does. A word of warning here though - if it is

> necessary for you to go back on gluten in order to be tested, I

> believe the minimum is 6 weeks. It is necessary to build up the

> gluten in your system again. No fun at all I'm told.

>

> There are several excellent books on the subject of celiac disease

> but the one I would recommend is by a Dr H R Green who is the

> director of the celiac disease center at Columbia Hospital in New

> York. It is called " CELIAC DISEASE A HIDDEN EPIDEMIC. " Perhaps

> your brother or his wife could find it in the library for you. It

> was published in 2006.

>

> Remember, I'm not criticizing you for what you are doing, I'm just

> trying to help. I can well understand why you are doing this as I

> spent 3 1/2 weeks suffering and lost 29 pounds before the Dr's

> realized I had CD.

>

>

>> No. I haven't been diagnosed with celiac. I got tired of being

>> chained to

>> the toilet and have everyone just shrug their shoulders. I'm eating

>> moderately gluten free and the " runs " have slowed down. There was

>> a point

>> when I was going almost 20 times a day. I would cry every time I

>> got that

>> cramp that lets you know you have to go.

>>

>>

>>

>> I have been tested in the past, but so much has happened to me the

>> last few

>> years that I'm desperate. I'm experimenting right now. I see the

>> gastro

>> doc in September and I will make sure to eat the gluten before I

>> go. I may

>> be wrong about all of this, but I haven't spent all day today in the

>> bathroom.

>>

>>

>>

>>

>>

>>

>>

>> Tigger (Ruth) in Rhode Island

>> 2/12/02 Lap Proxy RNY

>> 279lbs/220lbs/regain to 250lbs

>> 3/10/05 Open Distal (60 " ) RNY

>> 248 (Just before surgery)

>>

>> 114 (Lowest weight)

>>

>> 118 (Current weight)

>>

>> 140-150 (Goal)

>>

>> 5'5 " (height)

>>

>

>

>

>

>

>