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Hi ,

Good to see you. I hope you've been well? I've never noticed that food affects

me one way or the other but alchohol of course has never been recommended with

some of our medications. My rheumatologist did say in the last couple of years

to me that too much red meat wasn't good for me but I believe that was from a

dietary standpoint and not a Still's related? Hope this helps,

Food/Drink

I was wondering if certain foods or drinks seem to irritate a flare.

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I used to think that jalapenos & beer caused me to flair, but that isn't

the case. It must have been a coincident that I got sick twice after eating

that combo! I used to go through 2 gallons of jalapenos per year, so it

wasn't like I rarely ate them.

Kirk.

>

> I was wondering if certain foods or drinks seem to irritate a flare.

>

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Kirk, that is a wicked combination!

As for foods that make you flare; supposedly there's a belief that

some foods can. Unfortunetly they are all the ones I grew up with,

such as dairy (we ate a great deal of dairy products) and bleached

flour, bleached sugar, I suppose anything bleached might contribute

to a flare....

I think the point was to get everyone back to farming. Perhaps even

go as far back as the 1800's when processing foods hadn't caught on.

Of course wearing that hair bonnet just isn't a good look for me but

I don't mind tilling the soil and all that. I do however, draw the

line at killing my own animals.

Yeah, this is getting a little far fetched. Although there are those

people that think we really should go back to farming. Supposedly,

they feel (I've heard this first hand) we're being poisoned by our

own government. There's more to that but I'd rather not go into it.

Take care and be well.

Ellen

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One food that I've learned effects Fibro and, according to our holistic doctor

(Chiropractor/DC), many many conditions is wheat. I was diagnosed in June

(blood tests) as having a gluten sensitivity (not Celiac Disease) by my PCP.

Our DC has been trying to get me to stop eating wheat for 4 years. As soon as I

stopped eating wheat, I lost 15 pounds in a few weeks, heartburn (which I had

severely every day) dissappeared, gained so much energy, daily upset tummies

went away and mysterious aches and pains dissappeared. When Mark was in the

hospital, our church family (bless their hearts) brought lots of meals, but they

had wheat. Since I don't have Celiac, I thought...oh, well...a little wheat

won't hurt me. Well, everything came right back. Oh, and I feel incredibly

tired and sluggish when I eat wheat and I have these awful mysterious pains

throughout my body when I'm tired...changing from one place to another every few

minutes or so. Anyway, I'm not

the one with Stills, but I thought that info might help.

The main thing I wanted to say was when I started researching a gluten-free (GF)

diet, I found out that going GF helped many Fibro sufferers and I think that

many of you suffer from both Fibro and Stills (?).

Going GF is difficult to get used to, but I try and I feel best when I stick to

it. It gets easier as time goes on and the difference in how I feel is

definately worth it. I've decided to switch the entire family to a mostly GF

diet. I'll let you know if I notice a difference in Mark although it will be

hard to say if it is wheat-related since he is also changing meds, etc.

If you want advice on a GF diet, just e-mail me!

Bon Appetit,

Jody

Food/Drink

I was wondering if certain foods or drinks seem to irritate a flare.

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Jody, I would love to try gluten free. I keep hearing from so many people that

it has improved how they feel. I don't even know where to start with the gluten

free process. Any and all recommendations would be appreciated!

in Tx

Food/Drink

I was wondering if certain foods or drinks seem to irritate a flare.

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Sorry it took so long for me to answer. I had to work Monday night

and Tuesday - needless to say, I'm exhausted. And yes, I'm working

today but only 4 hours.

As for bleached sugar, from what I've heard, yes. I use sugar in my

coffee and when I bake (when I can stand for long periods of time)

but there are alternatives. Personally I can't stand the taste of

those " fake " sweeteners and that includes Splenda; another options

might be what's called " raw sugar " . It doesn't look pretty at all,

it's usually brown, perhaps different shades of brown and usually not

refined in anyway. It's still sugar, just the same.

The only other option I can see would be to grow your own sugar cane,

which really isn't difficult to do if you're in a warm climate. I

used to grow my own but we moved to our townhouse and my patio is

completely covered by cement. All my plants are in pots and I just

haven't had the time to go out and get a sugar cane to start growing

again.

Take care and be well.

Ellen

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Hi ! I will send more info directly to you later, but thought I'd send

this link to the whole group. A good starting point is this document

http://www.gluten.net/downloads/print/QuickStartDiet.pdf . You can, of course,

check out www.gluten.net as a whole, too.

Remember...there is a difference between choosing a GF diet and actually having

Celiac Disease. My doctor says I don't have to worry about cross-contamination

(if you have Celiac Disease you can't even use the same toaster).

Jody

Food/Drink

I was wondering if certain foods or drinks seem to irritate a flare.

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Jody:

Thanks for the info on Stevia. I completely forgot about it (not

unusual these days)! I've been using raw sugar and feeling a little

better with that but I know I'm missing the mark on nutrients so I'll

switch to Stevia now.

I've also changed salts, by the way. It's not something I usually

use since I have high blood pressure but I've gotten rid of all the

usual table salt and now only have two kinds in my cubbard. Kosher

salt and Sea Salt. I use the Sea salt when I make chicken soup

(homemade of course) and the like and the Kosher for things such as

mouth sores. My family doesn't notice the difference. Kosher salt

has been a staple in our house and something I grew up with.

When I bake, by the way, I do NOT add salt. Almost all recipes call

for it but I find it unnecessary and no one knows the difference.

Take care and be well. I have to get ready for work (ugh!)

Ellen

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,

I feel better when I do eat dairy, as well as a more " natural " diet.

I do my best when I have several servings of cheese a day (I hate milk

and yogurt), vegetables and meat. No processed foods from a box, no

pasta, no bread. Maybe some potatoes or rice.

Lately I have been off my more puritan diet and it does me no favors

in regards to my Stills. NOw that I am settled in my new house, i am

going back to my better eating and it should help how bad I am feelign

some.

My one bad thing is a can of soda a day. i cannot drink diet - I have

a bad reaction to artificial sweetners, and for me, I'd rather have

real, natural suger anyways. I don't find not drinking soda to help

me, so I allow my indulgence.

Houston

> My new doc says Dairy (calcium) is critical to eat during the day...

Yogurt,

> milk, cheese... What's the take on that? (non processed cheese of

> course--- not the deli slices in plastic).

>

> Curious minds want to know.

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Jody,

i think there are several of us here who would be interested in

learning more about a GF diet. I know i'd like to cut down some and

see if it makes a difference. but it seems so overwhelming to figure

out how to start, esp with all the other things we have to look out

for. Do you have any suggestions on where to start, resources, etc?

Houston

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Ellen,

I only use Sea Salt as well. it does not have iodine added to it and

is recommended for those with thyroid disease (who should watch iodine

consumption).

I switched years ago, but I find that I do way better on that than

table salt. Plus I think it tastes better.

Houston

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Good afternoon :

I just made the switch and as I said my boys haven't noticed.

Personally, I don't do well with anything having iodine since I'm

allergic to many different types of shell fish and that's where iodine

comes from I believe. I also have that trouble with contrasts when I

go for CAT scans and the like.

I had tried the " blood type " diet for a while and it was great, I had

a lot of energy, felt better, even my nails became stronger but it

almost impossible to maintain, at least for me it was. There are

things I still do, though such as putting lemon in glass of water, and

I LOVE fruit and veggies (that's never been a problem). If you have

an opportunity you should go to the library and check it out. Of

course, it helps to know what blood type you are.

Dogs are begging to go out, I think we'll do our 1/2 mile walk now

while I have the energy for it.

Take care and be well.

Ellen

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By the end of 2 weeks, upset stomachs and the pains in my body went away and I

felt confident to start weaning off of zantac (heartburn/GERD). To my surprise,

I didn't need it anymore. My face, rosacea, took maybe a month, though. And, I

lost 15 pounds in that first month without changing anything else in my life.

On the flipside, it only took a couple of days for problems to reappear, but I

went from zero gluten to lots when Mark went into the hospital, plus the stress

of that sure didn't help :-)! My PCP believes that once I go GF for a full 6

months or so, I will be able to eat a little here and there. Give my body time

to heal first. I've gone GF again beginning today! Please wish me luck.

I still need to type up the info that I got at a GF workshop to share with all

of you. Coming soon to an e-mail near you...:-)

Jody

Re: Food/Drink

Hi Jody,

How long did it take you to notice a difference after you went gluten free?

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Jody,

Personally I do fine with liquor - whiskey or vodka. I don't drink a

lot of beer anymore because I swell up, but occassionally will have

one. I can't drink red wine anymore, makes me feel like crap, but

white and champagne are fine. I don't drink a whole lot - usually

just one here and there or if my parents are in town, a few extra. My

liver gets tested every 3 months, so for me, I don't mind having a few

drinks in between as long as the doc isn't worried about the results

of my tests. My old rheumy in Los Angeles used to say that it's not

going to hurt to have a drink or two on these meds. I think he

believed in finding the balance in life. but that is a very personal

decision between a patient and the doc.

Houston

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Calcium is critical for those who are on Pred. When I started pred. My doctor

had to help me find a calcium pill I could take and not throw up. Plus I craved

cheese, so that helped some, but when you are partially lactose intolerant you

have to be careful how much dairy you eat.

For me calcium is one of those minerals that is difficult to balance in my body.

I get more calcium than my body utilizes then I get calcium deposits (bone

spurs) in my joints, especially my knees. Yet my doctors want me to get enough

calcium so that I don't end up with osteoporosis.

Fayette, OH

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My Great Aunt has Gluten sensitivity, and her son has Celiac's disease.

She also said that once she went Gluten free she felt a lot better, and she

didn't have any major health issues. I have Fibro and have had no problems with

gluten or wheat.

Fayette, OH

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