New Member - Rheumatoid Arthritis made better with gluten-free

[Guest guest]

Hi!

I've been sick for the past 12yrs and no one could find anything

wrong with me. I had severe fatigue, muscle spasms/aches,

bone/joint pain. Finally, a rheumatologist did an MRI on my wrist

and it showed multiple joint erosions consistant with R.A. and

started me on methotrexate which helped tremendously. But, my blood

work never showed positive for rheumatoid factor or any other

rheumatoid markers. Last year the disease was progressing so much

that I took to the internet and found that many people with

arthritis respond to a gluten-free diet...so I tried it. After 6

days, I was up and walking around as if there was nothing wrong with

me. Needless to say, I continued cutting out all the wheat sources

I was aware of, but I don't think I've been 100% compliant because

my arthritis is continuing to progress and I feel horrible after

I've eaten out at a restaurant. My Rheumatologist has tried me on

Enbrel, which didn't work and made me sicker. Now, he's wanting to

try stronger more powerful chemo drugs. I decided to go to a

gastroenterologist that my local Celiac Support Group recommended.

MD's office told me to re-introduce wheat back into my diet for 30

days prior to coming in for the blood work and endoscopy/biopsy.

I'm terrified of being sick again for a whole month. I think I need

to get a real diagnosis before I let the Rheumatologist put me on

some expensive high-powered chemo drugs for R.A. I'm thinking that

maybe if I can get 100% gluten free with the support of your group

the symptoms of R.A. may disappear. I'd love to hear any of your

thoughts/suggestions on this topic!

Gail

[Guest guest]

Gail,

Welcome to our " little " group. I want you to know

that I am a 28yo with RA and celiac disease. I was dx

with the celiac first and then the RA. I find that my

RA is much less painful and debilitating when I stay

gf and dairy free. The nice part is if I stay gf and

df then I dont have to take RA drugs outside of the

occassional anti-inflamatory

Best of luck.

Kansas City

--- regc80 regc80@...> wrote:

> Hi!

> I've been sick for the past 12yrs and no one could

> find anything

> wrong with me. I had severe fatigue, muscle

> spasms/aches,

> bone/joint pain. Finally, a rheumatologist did an

> MRI on my wrist

> and it showed multiple joint erosions consistant

> with R.A. and

> started me on methotrexate which helped

> tremendously. But, my blood

> work never showed positive for rheumatoid factor or

> any other

> rheumatoid markers. Last year the disease was

> progressing so much

> that I took to the internet and found that many

> people with

> arthritis respond to a gluten-free diet...so I tried

> it. After 6

> days, I was up and walking around as if there was

> nothing wrong with

> me. Needless to say, I continued cutting out all

> the wheat sources

> I was aware of, but I don't think I've been 100%

> compliant because

> my arthritis is continuing to progress and I feel

> horrible after

> I've eaten out at a restaurant. My Rheumatologist

> has tried me on

> Enbrel, which didn't work and made me sicker. Now,

> he's wanting to

> try stronger more powerful chemo drugs. I decided

> to go to a

> gastroenterologist that my local Celiac Support

> Group recommended.

> MD's office told me to re-introduce wheat back into

> my diet for 30

> days prior to coming in for the blood work and

> endoscopy/biopsy.

> I'm terrified of being sick again for a whole month.

> I think I need

> to get a real diagnosis before I let the

> Rheumatologist put me on

> some expensive high-powered chemo drugs for R.A. I'm

> thinking that

> maybe if I can get 100% gluten free with the support

> of your group

> the symptoms of R.A. may disappear. I'd love to

> hear any of your

> thoughts/suggestions on this topic!

> Gail

>

>

>

>

__________________________________________________

[Guest guest]

Gail

I had the most dreadful joint pain prior to going GF and Casein

free. The rheumy just threw his hands in the air about me.

I finally went to pain management doc who suggested it might be

celiac disease. I had been on a very low gluten diet naturally so

she told me to do 6 weeks of high gluten.

Those were the most miserable 6 weeks of my life. Within 2 days I

could barely move, had a virulent corneal rejection and couldn't move

from the bathroom.

My joint pain, that isn't osteonecrosis related, has eased except

when I eat vegetables from the nightshade family. Eggplant being the

worst offender.

I am going to send you something off list about diet and RA.

Shez

[Guest guest]

Thanks ,

I don't believe I have a problem with dairy or night

shades. I did an elimination diet last year after I

saw imporvement from R.A. symptoms. The only thing

that seems to bother me is gluten, but I have had

worsening of symptoms after eating corn sometimes.

gail

__________________________________________________

[Guest guest]

Hi Sherene,

I am very worried about getting very sick with adding

gluten back in my diet for 30 days. They said to do

it slowly starting with just a cracker a day and

slowly increasing up to a slice of bread 3 times daily

over a week. Before gluten free I hurt so bad I could

barely walk and considered going on long-term

disability. With such a reaction to gluten I'm pretty

sure the tests will show something. Several years ago

I went to an Immunologist to see if I had allergies

that were making me sick. At that time I had elevated

IgA levels and elevated eosinophils, but the MD didn't

think it was anything at the time. Are these the

markers for Celiac?

gail

__________________________________________________

[Guest guest]

You could always look into getting tested for the genetic markers for Celiac. If you have the gene for it and you feel so much better on the GF diet, then just continue staying GF. It won't be an 'official' diagnosis though. It's completely understandable that you don't want to intentionally make yourself sick and cause yourself so much pain.

Also, think about testing through Enterolabs. It's an at home stool test that you mail back to the lab for them to analyze. I believe I remember someone saying that you do not have to be eating gluten for the test to be accurate. I have not used them for anything so I don't know all the details very well.

Can anyone else explain Enterolabs for Gail?

~ in NH / MA

>> Hi Sherene,> I am very worried about getting very sick with adding> gluten back in my diet for 30 days. They said to do> it slowly starting with just a cracker a day and> slowly increasing up to a slice of bread 3 times daily> over a week. Before gluten free I hurt so bad I could> barely walk and considered going on long-term> disability. With such a reaction to gluten I'm pretty> sure the tests will show something. Several years ago> I went to an Immunologist to see if I had allergies> that were making me sick. At that time I had elevated> IgA levels and elevated eosinophils, but the MD didn't> think it was anything at the time. Are these the> markers for Celiac?> gail> > __________________________________________________>

[Guest guest]

How do I get in touch with Enterolabs for a test kit?

gail

__________________________________________________

[Guest guest]

www.enterolabs.com

Re: New Member - Rheumatoid Arthritis made better with gluten-free

How do I get in touch with Enterolabs for a test kit?gail__________________________________________________

[Guest guest]

www.enterolabs.com

Re: New Member - Rheumatoid Arthritis made better with gluten-free

How do I get in touch with Enterolabs for a test kit?gail__________________________________________________

[Guest guest]

www.enterolabs.com

Re: New Member - Rheumatoid Arthritis made better with gluten-free

How do I get in touch with Enterolabs for a test kit?gail__________________________________________________

[Guest guest]

www.enterolab.com

B

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

How do I get in touch with Enterolabs for a test kit?gail__________________________________________________

[Guest guest]

I used enterolab for myself and my family. Although, it's not a test generally recognized by the conventional medical community yet, it is believed to be far more accurate than the blood tests/biopsy diagnosis. There's tons of info on the enterolab website on this topic: http://www.enterolab.com/StaticPages/Frame_Faq.htm

They don't recommend a gluten challenge prior to testing, but if you've been off gluten, the results won't be entirely accurate. However, I highly recommend you also get the gene test. Because I had been off gluten and only did a 5 day challenge (and that made me so sick!), my antibodies were just high normal, but I have the DQ2 gene, which is the main celiac gene. I honestly didn't care about the test results for myself as I knew gluten made me sick, but the gene test provided the justification for getting my kids tested.

There are now some progressive doctors that use the enterolab test for their patients.

I took the test results to the pediatrician and he didn't debate the results or the method of diagnosis - his only response was that the diet was difficult to stick to. I just took my son back for his checkup (3 years later) and the doctor is amazed at how well he is now doing. He's now 95% height and 92% weight. Before GF, he wasn't short, but his height was more like 75% and weight often 25-30%. And, most importantly, he's smiling and happy.

I hope this helps.

B.

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

You could always look into getting tested for the genetic markers for Celiac. If you have the gene for it and you feel so much better on the GF diet, then just continue staying GF. It won't be an 'official' diagnosis though. It's completely understandable that you don't want to intentionally make yourself sick and cause yourself so much pain.

Also, think about testing through Enterolabs. It's an at home stool test that you mail back to the lab for them to analyze. I believe I remember someone saying that you do not have to be eating gluten for the test to be accurate. I have not used them for anything so I don't know all the details very well.

Can anyone else explain Enterolabs for Gail?

~ in NH / MA

>> Hi Sherene,> I am very worried about getting very sick with adding> gluten back in my diet for 30 days. They said to do> it slowly starting with just a cracker a day and> slowly increasing up to a slice of bread 3 times daily> over a week. Before gluten free I hurt so bad I could> barely walk and considered going on long-term> disability. With such a reaction to gluten I'm pretty> sure the tests will show something. Several years ago> I went to an Immunologist to see if I had allergies> that were making me sick. At that time I had elevated> IgA levels and elevated eosinophils, but the MD didn't> think it was anything at the time. Are these the> markers for Celiac?> gail> > __________________________________________________>

[Guest guest]

I am amazed at how Rheumatolgists don't seem to know much about

celiac or the relationship to food and RA. I have been dx with RA

for 17 years, and a sortment of other autoimmune diseases that came

later. While I do eastern and western medicine, I have been

complaining about my stomach for years. I have also been on meds

for years (now Enbrel, arava, voltaren XR, synthyriod, protonix, and

other enzymes and vitamins type things). Finally, looking for

something else I was dx with celiac. I have been on the gluten free

diet for 10 months, and lactose free and fructose free for about 5

months (hopefully they both are short term). My RA is not gone of

course, but taking it a day at a time, I am doing great. I am

riding my bike distances again, and I have energy for my kids etc.

Not that it's all perfect, but much better. It is worth it to do

the gluten challenge, yes you may feel bad but sorting it out it

worth it. I am still sorting out my diet, as the celiac has wrecked

havoc in my body thus the lactose and fructose free diets. I won't

gone on with all the issues like so many of us have, and for the

frist few months of all of this things got a lot worse, then a lot

better. This is a process, we have been poisoning ourselves for a

long time without knowing it.

Good Luck,

Suzi

p.s. I have done a lot of RA meds if you have any questions.