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Polymyalgia Rheumatica....


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#1 rock on!

 
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Posted 05 December 2007 - 08:46 AM

Hi all,

My husband just found out that his Mom probably has polymyalgia rheumatica, a sort of inflammatory arthritis. She's been feeling really run down for weeks, has had a low grade fever, but no major aches & pains. The blood tests came back with really high Sed Rates. Everything else was normal.

We were just wondering if going gluten free could help her. Since my husband has psoriatic arthritis, which is also an inflammatory arthritis, and has had a slowly positive response to gluten-free, we were thinking maybe she should try it too.

Anyone have any experience with this - or research info related to this?

Thanks!!!
  • 0
never dx Celiac
dx IBS whole life
gluten free 9/12/07

husband:
blood test results negative
dx psoriatic arthritis 2005
psoriasis since childhood
gluten free 9/14/07

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#2 Glutenfreefamily

 
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Posted 02 January 2008 - 08:53 PM

Im sorry it looks like your post didnt get pinned, Im going to bump it up so hopefully it gets noticed. Sorry I cant help with your question but hopefully someone else can :)
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#3 Generic

 
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Posted 03 January 2008 - 12:20 AM

My dad has that, but refuses to go gluten free. I am pretty sure it would be a night and day difference. I also would love to read any info any one might have.
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#4 ravenwoodglass

 
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Posted 03 January 2008 - 03:13 AM

From the NIH:(the bold is mine)

From the NIH: Polymyalgia rheumatica is a rheumatic disorder that is associated with moderate to severe muscle pain and stiffness in the neck, shoulder, and hip area. The cause of polymyalgia rheumatica is not known; however, possibilities include immune system abnormalities and genetic factors.

From the Arthritis Society (the bold is mine):

The type of arthritis has to be determined first. Is the arthritis due to the Crohn’s disease (joint symptoms may precede bowel symptoms for months or longer)? Is the arthritis due to a blind loop syndrome with bacterial overgrowth (a possible complication of the Crohn’s disease)? Could the arthritis be due to a bowel condition that is mimicking Crohn’s disease e.g. Behcet’s disease, celiac disease or Whipple’s disease? Or could the arthritis be unrelated to the Crohn’s disease e.g. rheumatoid arthritis or lupus? A consultation with a rheumatologist is advised to diagnose the type of arthritis that is present.

NSAID’s can worsen Crohn’s disease. However, many types of arthritis can be helped by the same drugs that are used to treat Crohn’s disease: prednisone, sulfasalazine, methotrexate and infliximab. If the arthritis is related to the Crohn’s disease, it should disappear with the successful treatment of the Crohn’s disease. If the arthritis is due to bacterial overgrowth in the bowel, the appropriate antibiotics should cure it. If the arthritis is due to Behcet’s disease, then immunosuppressants might help. Arthritis secondary to celiac disease responds to a gluten-free diet and Whipple’s disease is cured with antibiotics. The treatment of a totally unrelated form of arthritis depends on the specific diagnosis. Again, a consultation with a rheumatologist would be helpful.


I have found the little bit of research I have done to be quite interesting. It really makes one wonder how well some of our doctors have even researched what they deem us to have. According to much of the research I have seen on this my labs and symptoms fit this form of arthritis much better than the 'it's just old age' (I was 40!) that I was pronouned to have because I didn't have the RA factor. My sed rate was elevated for years and it was blown off and attributed to my 'pickers acne' otherwise known as DH. If they had not blown off the elevated labs and had looked at some research and added it together with all my other health issues maybe a light might have gone off for a doctor somewhere in the years of disabling pain they might have made a connection. But labeling me with IBS and mental issues was so much easier.

If you can get your Mom to try the diet please do so. She may feel like a different person before long. The last thing I expected with the gluten free diet was for my arthrtis to go into remission. I was pain free within 2 months. She has nothing to lose by trying the diet except her pain.
  • 0
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)

#5 rock on!

 
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Posted 03 January 2008 - 09:08 AM

Thanks for your responses.
She has decided to go gluten free. She is also on prednisone. She immediately started feeling better when she started the prednisone. She is now able to taper down on the dosage (hooray for small miracles).
She has chosen to go gluten-free to help reduce any inflammation in her body so that she can be weaned off the prednisone as soon as possible. It's hard to tell if the gluten-free is helping anything, since she never really presented with major pains anyway.

I agree with you Ravenwood...we're still not sure if polymyalgia rheumatica is the correct dx for her. She just recently told us that when she was 17 she had a bout of 'Icelandic Disease' for about 3 months (also an immune issue) but her current dr does not think the 2 are connected. How could they not be?!

If anyone has any other info on this condition, it would be appreciated.

Thanks & Happy New Year!!
  • 0
never dx Celiac
dx IBS whole life
gluten free 9/12/07

husband:
blood test results negative
dx psoriatic arthritis 2005
psoriasis since childhood
gluten free 9/14/07

#6 mushroom

 
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Posted 03 January 2008 - 06:30 PM

Thanks for your responses.
She has decided to go gluten free. She is also on prednisone. She immediately started feeling better when she started the prednisone. She is now able to taper down on the dosage (hooray for small miracles).
She has chosen to go gluten-free to help reduce any inflammation in her body so that she can be weaned off the prednisone as soon as possible. It's hard to tell if the gluten-free is helping anything, since she never really presented with major pains anyway.

I agree with you Ravenwood...we're still not sure if polymyalgia rheumatica is the correct dx for her. She just recently told us that when she was 17 she had a bout of 'Icelandic Disease' for about 3 months (also an immune issue) but her current dr does not think the 2 are connected. How could they not be?!

If anyone has any other info on this condition, it would be appreciated.

Thanks & Happy New Year!!


  • 0
Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#7 mushroom

 
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Posted 03 January 2008 - 07:02 PM

I have been consecutively diagnosed (five years ago) with polymyalgia rheumatica, then rheumatoid arthritis (symptoms of both) followed by psoriatic arthritis when the psoriasis later appeared. Have also had gout. Father was diagnosed with polymalgia, sister and her daughter both celiacs. I was also previously diagnosed with IBS, fibromyalgia and various other erroneous diagnoses. Treated for auto immune disorders with methotrexate, sulfasalazine, NSAIDS, Plaquenil, all of which became toxic to me (Prednisone was already a no-no for me). Since stopping all meds and going gluten free two months ago, and now under care of a naturopath, all arthritic pain is gone, and psoriasis is 50% better. Swollen digits are returning to normal. Still have high levels of inflammation, however (CRP and sed rate). Was always RA negative. Am awaiting further developments hopefully.
  • 0
Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#8 ravenwoodglass

 
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Posted 04 January 2008 - 08:07 AM

I have been consecutively diagnosed (five years ago) with polymyalgia rheumatica, then rheumatoid arthritis (symptoms of both) followed by psoriatic arthritis when the psoriasis later appeared. Have also had gout. Father was diagnosed with polymalgia, sister and her daughter both celiacs. I was also previously diagnosed with IBS, fibromyalgia and various other erroneous diagnoses. Treated for auto immune disorders with methotrexate, sulfasalazine, NSAIDS, Plaquenil, all of which became toxic to me (Prednisone was already a no-no for me). Since stopping all meds and going gluten free two months ago, and now under care of a naturopath, all arthritic pain is gone, and psoriasis is 50% better. Swollen digits are returning to normal. Still have high levels of inflammation, however (CRP and sed rate). Was always RA negative. Am awaiting further developments hopefully.


It's amazing isn't it when the pain goes away! I just wish doctors would at least suggest it as a possibility when folks appear with arthritic pain and so many other related disorders. Like you I was on a pharmacopia of meds, a tackle box full, when all I needed was a change in diet. It can take a while to heal but it sounds like you are well on your way. One of my happiest days was the one when I cancelled my subscription to Arthritis Today!
  • 0
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)

#9 mushroom

 
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Posted 05 January 2008 - 05:15 PM

It's amazing isn't it when the pain goes away! I just wish doctors would at least suggest it as a possibility when folks appear with arthritic pain and so many other related disorders. Like you I was on a pharmacopia of meds, a tackle box full, when all I needed was a change in diet. It can take a while to heal but it sounds like you are well on your way. One of my happiest days was the one when I cancelled my subscription to Arthritis Today!

Yes, you get so used to the pain you are astonished when it vanishes. I think the reason alleopathic doctors are not more understanding of these problems is that they have so little training in nutrition. Here in New Zealand I think it's about six hours! in basic medical training. My naturopath says that my whole GI system is inflamed, which would certainly explain why the inflammation spread to the rest of my body, to be expressed in all these other ways. My celiac sister, who is occasionally "naughty" with what she eats (her expression) has multiple other inexplicable aches and pain syndromes which I suspect may be related to other food allergies (she already knows she is allergic to salicylates and to weed and insecticidal sprays). I, myself, am intolerant to lactose, soy, and corn (the latter in the U.S. only, probably because it is all GM contaminated by now). Also cannot eat any beef but organic in U.S. probably because it is all fed GM corn. Down here beef and corn are no problem, but we are inexorably losing the GM fight. Darn!
  • 0
Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#10 nmw

 
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Posted 05 January 2008 - 07:33 PM

My MIL was diagnosed with this a year ago and went for the steroids right away, even though she really didn't want to go on them. When I mentioned that a gluten-free diet might help with the inflammatory aspect of the disease her eyes glazed over and she changed the subject.
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#11 cyberprof

 
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Posted 12 October 2012 - 11:39 AM

I'm going to resurrect this old thread rather than start a new one. I know the OP isn't still around but raven and mushroom are. Hope to get input from anyone who has polymyalgia rheumatica.

My mom was diagnosed with polymyalgia rheumatica this week. She's been in terrible pain for months and is 80yo. I'm interested to know if anyone has had resolution of symptoms of polymyalgia rheumatica after going gluten-free? She has gone on steroids but probably shouldn't be on them for the rest of her life. (She's had regular osteoarthritis for 40+ years too.)

She has one diagnosed celiac kid (me) and one other negative but gluten-sensitive kid (my brother) who had great results on gluten-free diet but she refuses to consider gluten as her problem. She denies it because she's "never" had GI issues ...but forgets that I knew where all the bathrooms were as a kid because she would have "attacks" where she had to find a bathroom immediately! None of what I said has sunk in. Now with this diagnosis today, I hope she will listen. My dad is going to try to get her to try it.

We went to an arthritis seminar last month put on by the Arthritis Foundation. The speaker was Heidi Turner RD from The Seattle Arthritic Clinic http://theseattleart...ut/people.shtml and her whole presentation was about the impact of food intolerances on pain and how to figure out if wheat (or dairy, soy, corn, nightshades) are the probelem. But I wasn't able to crack Mom's denial. I told my dad that if mom doesn't want to go gluten-free, she should at least go see Turner for a consult.

Big sigh. I hate to see her in pain and on drugs.
  • 0
Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

#12 ravenwoodglass

 
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Posted 12 October 2012 - 12:46 PM

It would be great if you could get a consult with doctor Turner, especially if your Mom will let you go with her. However you may never get her to realize that her issues could be gluten related. Since you are a diagnosed celiac one thing you could do is call and ask to speak with her GP. Tell them you are diagnosed and suspect your Mom may be celiac also. While the doctor can not discuss your Mom's health issues with you due to Hippa regs that doesn't mean you can not discuss them with the doctor. If the doctor can 'sneak' in a celiac screening with some other blood work perhaps if she comes back positive she will listen to the doctor. It is also possible that she won't. I have family and close freinds who have symptoms that scream celiac like low cholesterol numbers and low vit D along with other symptoms but refuse to consider that they might need the diet also. As the old saying goes you can lead a horse to water, but you can't make him drink.
I really feel for you and wish I had a magic wand but.....
  • 0
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)

#13 cyberprof

 
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Posted 12 October 2012 - 01:00 PM

It would be great if you could get a consult with doctor Turner, especially if your Mom will let you go with her. However you may never get her to realize that her issues could be gluten related. Since you are a diagnosed celiac one thing you could do is call and ask to speak with her GP. Tell them you are diagnosed and suspect your Mom may be celiac also. While the doctor can not discuss your Mom's health issues with you due to Hippa regs that doesn't mean you can not discuss them with the doctor. If the doctor can 'sneak' in a celiac screening with some other blood work perhaps if she comes back positive she will listen to the doctor. It is also possible that she won't. I have family and close freinds who have symptoms that scream celiac like low cholesterol numbers and low vit D along with other symptoms but refuse to consider that they might need the diet also. As the old saying goes you can lead a horse to water, but you can't make him drink.
I really feel for you and wish I had a magic wand but.....


Thanks Raven. I know your history too and it helps that others here understand.

I think she and my dad have both had the blood test for celiac and were negative. That's the killer. But my blood was negative (while on gluten but after positive biopsy that found celiac by "accident"), my son's was negative, my brother's was negative. I don't know if we have a type of celiac that doesn't show or don't make enough blood antibodies or what (although I know that my son and I had all the tests, even the ones that show if someone is IgA deficient). Or maybe we're non-celiac gluten-intolerant but I do know that I got the gene from one of them. But unless her doc is going to do an endoscopy, there's a good chance the blood would be negative again.

I guess what I'd love to hear are success stories of people who had it and it went away after going gluten-free without steroids. Apparently it may go away after 2-3 years, but long-term steroid use isn't going to be good for her either.

I also wonder about low-dose methotrexate - maybe that would be a good option too.
  • 0
Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

#14 mushroom

 
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Posted 12 October 2012 - 01:16 PM

While I was originally diagnosed with polymyalgia rheumatica, that was later changed to RA (RF negative) and then to psoriatic arthritis. It was my dad who lived with the diagnosis of polymyalgia rheumatica which I don't believe was accurate, because it is not something you get in your feet. He was on prednisone until he died, and all his teeth started rotting. I am sure he had gluten problems, as did my mom (and all four of us, their chldren). My PsA is mostly in remission, but if I quit my Humira for four months as I had to do this summer it starts to come back despite my no nightshade diet.

I am sorry I can't be of more help. :( No one in my family was ever tested for celiac, my oldest sister ate gluten free and her daughter is diagnosed celiac.
  • 0
Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator




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