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Rheumatoid Arthritis Other Symptoms And Celiacs


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#1 Dancer

 
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Posted 11 May 2013 - 04:17 PM

Hi,

I have not been diagnosed with celiacs but have been diagnosed as RA. it has showed up in my blood and I've had a lot of pain and inflammation. I've noticed that when I go gluten free as well as eliminating things like potato and white carbs I get close to being symptom free. For years before the RA came on I've had lots of symptoms that no-one ever found a reason for, hay fever, anxiety, inability to concentrate, a little bit impulsive at times I seemed to have CF symptoms. My doctor just seems to think i have hypochondria since he cannot work it out. I am suspecting that i have been celiacs for a long time. My Mum was crippled with RA so I will do anything to get better. I've radically changed my diet. I'm finding it tough at times. Sometimes I feel hungry because its hard to find food. I'm having to change my whole lifestyle and preprepare.

I am wondering if other people have had similar issues. I'd love to hear your stories or any tips they may have. I'm alone with this. My doctors think I'm nuts for taking the approach I have, they seem to think I should take Celebrex and methotrexate. (Heavy drugs that make me sick)

I think I need to fix leaky gut and alkaline etc.

I'm also very constipated. I am paying for colonic irrigation at the moment to try to get things moving again and move out the toxins.

I'd love to hear from people who've been through similar.
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#2 Deaminated Marcus

 
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Posted 11 May 2013 - 07:07 PM

Hi Dancer, 

 

My main reason for my interest in Celiac or gluten sensitivity is to get pain relief.

I first had foot pain long ago that went to the other foot.

At first the doctor I had back then thought I was making it up as the pain would go from one foot to the other.

He finally did an blood test and i had a positive RA factor.

He sent me to a Rheumatologist who said it was fibromyalgia.

 

Later I went gluten free and I got some relief but then pain returned.

From a food diary and later a food intolerance blood test I found out I have other food intolerances such as red kidney beans etc.

 

This year I decided to do a gluten challenge in order to be tested for Celiacs.

Well  now my right thumb is swollen and burns.

My left thumb is ok but my left hand is sore.

Do you think that is Rheumatoid arthritis?

Do you know if the exact same joints have to hurt?

And do they have to hurt at the same time?

 

I've seen posts here and on a another board of people who got pain relief by going gluten free

and who discovered other food intolerances such as Casein in milk, or egg protein, nuts, legumes

are the major culprits.

 

I feel the same way you do about drugs. I'm looking for the source of the problem. 


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#3 nvsmom

 
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Posted 11 May 2013 - 08:03 PM

Celiac disease can cause arthralgias too. I am one who gets pain that my rheumy thinks is celiac caused but my GP thinks is rheumatic. There are a few around here who have found that the gluten-free diet has helped in various types of arthritis but it seems to takes many months to years for the gluten-free diet to positively affect things. If you need a fast fix of symptoms, you might want to consider the meds that the doctors can offer until the gluten-free diet makes a difference for you.

I'm not very knowledgable in this area, I am sure someone else will be along to help.

Welcome to the board. :)
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#4 Dancer

 
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Posted 12 May 2013 - 04:42 AM

Hi Dancer, 
 
My main reason for my interest in Celiac or gluten sensitivity is to get pain relief.
I first had foot pain long ago that went to the other foot.
At first the doctor I had back then thought I was making it up as the pain would go from one foot to the other.
He finally did an blood test and i had a positive RA factor.
He sent me to a Rheumatologist who said it was fibromyalgia.
 
Later I went gluten free and I got some relief but then pain returned.
From a food diary and later a food intolerance blood test I found out I have other food intolerances such as red kidney beans etc.
 
This year I decided to do a gluten challenge in order to be tested for Celiacs.
Well  now my right thumb is swollen and burns.
My left thumb is ok but my left hand is sore.
Do you think that is Rheumatoid arthritis?
Do you know if the exact same joints have to hurt?
And do they have to hurt at the same time?
 
I've seen posts here and on a another board of people who got pain relief by going gluten free
and who discovered other food intolerances such as Casein in milk, or egg protein, nuts, legumes
are the major culprits.
 
I feel the same way you do about drugs. I'm looking for the source of the problem.


Marcus I've been reading a book called conquering arthritis by Barbara Allen and I'm finding it helpful. She says she got better from diet etc.

The distinguishing thing with RA is its usually asymmetrical meaning flares occur on both sides of the body at the same time so I'm not sure if yours sounds like RA. I think you are on the right track by looking into allergies/sensitivites and getting your gut in order.
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#5 ravenwoodglass

 
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Posted 12 May 2013 - 05:53 AM

My RA has been in remission since a few months into the gluten free diet. For complete relief I found I also had to drop soy but that may not be the case for you. I was also prescribed the same drugs you were (and loads more!} and found them not to help at all. I hope you get some relief from the diet but it can take time.

If you need a diagnosis of celiac to keep you strict on the diet do keep on the gluten until after you are done testing.


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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#6 Dancer

 
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Posted 12 May 2013 - 12:49 PM

My RA has been in remission since a few months into the gluten free diet. For complete relief I found I also had to drop soy but that may not be the case for you. I was also prescribed the same drugs you were (and loads more!} and found them not to help at all. I hope you get some relief from the diet but it can take time.
If you need a diagnosis of celiac to keep you strict on the diet do keep on the gluten until after you are done testing.


Thank you Ravenwood. Sounds like you've had a tough time, but your story is inspirational and gives me a lot of hope.
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#7 janpell

 
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Posted 13 May 2013 - 11:37 AM

I don't have RA but do have PsA, which is pretty similar. I got off my DMARDs two years ago. A huge difference has been made through my diet. My GP's don't buy it but my Rheumatologist tells me to keep up what I am doing and come in for yearly check ups to make sure everything is good. Unfortunately, for me, it doesn't stop with just gluten. I have to watch and watch everything all the time. I definitely get symptoms (very strong ones) when I consume gluten but they don't necessarily always lead to joint pain but enough problems I keep away. Oranges and fresh tomatoes are immediate problem makers for my joints. I don't have a Celiac diagnosis because like you, I had so many problems and they never worked out, even with medications that my doctor just said it was stress and anxiety (which I didn't have but was getting because there were so many physical things going on with my body). I never would have guessed diet so I am lucky I started to react to my medications because I would have put all my trust in doctors and not looked into natural alternatives :) -  it's  been a life saver.


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#8 Dancer

 
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Posted 13 May 2013 - 12:04 PM

I don't have RA but do have PsA, which is pretty similar. I got off my DMARDs two years ago. A huge difference has been made through my diet. My GP's don't buy it but my Rheumatologist tells me to keep up what I am doing and come in for yearly check ups to make sure everything is good. Unfortunately, for me, it doesn't stop with just gluten. I have to watch and watch everything all the time. I definitely get symptoms (very strong ones) when I consume gluten but they don't necessarily always lead to joint pain but enough problems I keep away. Oranges and fresh tomatoes are immediate problem makers for my joints. I don't have a Celiac diagnosis because like you, I had so many problems and they never worked out, even with medications that my doctor just said it was stress and anxiety (which I didn't have but was getting because there were so many physical things going on with my body). I never would have guessed diet so I am lucky I started to react to my medications because I would have put all my trust in doctors and not looked into natural alternatives :) -  it's  been a life saver.


I guess I've ad the benefit f my Mums experience. She was really sick with RA and the doctors couldn't help. I've known from the outset not to rely on them.
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#9 Deaminated Marcus

 
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Posted 13 May 2013 - 01:58 PM

Hello all above (this post) an update...

 

When I saw a gastroenterologist about 2 weeks ago and he asked me what I was hoping to find,

I said me and my PCP want him to look for intestinal inflammation (Celiac or Colitis etc) as the source of my pain.

Well the jerk answered it's not as if you have Ankylosing Spondylitis, which ironically is what my PCP and I think I have.

 

Well my PCP just called me to tell me that the blood test results came in and I did test positive for HLA-B27,

the test for  Ankylosing Spondylitis.

 

So irony 1:  the gastro doctor jerk said I don't have   Ankylosing Spondylitis and now we have a positive blood test

for me to take to a rheumatologist. 

 

Irony 2:   My PCP tested me 2 times when I was gluten free, and the tests were negative.


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#10 janpell

 
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Posted 13 May 2013 - 03:25 PM

Gluten really sets my neck pain off, no where else but definitely in my upper spine. It's very frustrating, isn't it.


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#11 Deaminated Marcus

 
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Posted 13 May 2013 - 05:31 PM

janpell,    yes the darn neck pain.

 

It was so bad, and my PCP sent me for an MRI.

I don't know how to repeat the findings here as it's technical and too detailed to put here

but the neurologists (2) said there's nothing wrong with my neck.

Well then how come I can't bend it much to one side LOL.

 

But I'm still on the gluten challenge and the neck pain isn't bothering me much these days.

Pain moves around sometimes daily and sometimes weekly.

It's so strange.


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#12 janpell

 
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Posted 14 May 2013 - 11:03 AM

Cut it out completely. It took me over a year to cut it out thinking it was this or that. I tested two months ago and although it didn't start the joint pain so much I got very strong symptoms for other things - psoriasis, mucus in stool, hair loss, neck pain and pressure in the base of my skull for 10 days after consuming. The longer I stay away from the more pronounced the symptoms were, whew, because I was having a hard time figuring it out because "I'm not Celiac" (because dr's won't test me) I really didn't believe it was the gluten but yeah, it was obvious. I do believe cross contamination gets me when I'm not careful. I am much happier, physically, when I eat a whole foods, gluten and dairy free diet (except goat cheese and parmesan on occasion). Just learning what I can get away with is where I am at right now.


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#13 Dancer

 
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Posted 14 May 2013 - 11:20 PM

I don't have RA but do have PsA, which is pretty similar. I got off my DMARDs two years ago. A huge difference has been made through my diet. My GP's don't buy it but my Rheumatologist tells me to keep up what I am doing and come in for yearly check ups to make sure everything is good. Unfortunately, for me, it doesn't stop with just gluten. I have to watch and watch everything all the time. I definitely get symptoms (very strong ones) when I consume gluten but they don't necessarily always lead to joint pain but enough problems I keep away. Oranges and fresh tomatoes are immediate problem makers for my joints. I don't have a Celiac diagnosis because like you, I had so many problems and they never worked out, even with medications that my doctor just said it was stress and anxiety (which I didn't have but was getting because there were so many physical things going on with my body). I never would have guessed diet so I am lucky I started to react to my medications because I would have put all my trust in doctors and not looked into natural alternatives :) -  it's  been a life saver.

I'm so glad you reacted to the drugs.  It sounds like you are much healthier because of it.  I hope it all comes together for me.


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#14 Dancer

 
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Posted 14 May 2013 - 11:23 PM

Hello all above (this post) an update...

 

When I saw a gastroenterologist about 2 weeks ago and he asked me what I was hoping to find,

I said me and my PCP want him to look for intestinal inflammation (Celiac or Colitis etc) as the source of my pain.

Well the jerk answered it's not as if you have Ankylosing Spondylitis, which ironically is what my PCP and I think I have.

 

Well my PCP just called me to tell me that the blood test results came in and I did test positive for HLA-B27,

the test for  Ankylosing Spondylitis.

 

So irony 1:  the gastro doctor jerk said I don't have   Ankylosing Spondylitis and now we have a positive blood test

for me to take to a rheumatologist. 

 

Irony 2:   My PCP tested me 2 times when I was gluten free, and the tests were negative.

That is so interesting that your PCP test was negative when Gluten free but seemed to be positive shen you weren't.  I am wondering if you heal one auto-immune disease you may be healing them all.


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