Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Polymyalgia Rheumatica....
0

14 posts in this topic

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

Share this post


Link to post
Share on other sites


Ads by Google:

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 :)

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites




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

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites
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

Share this post


Link to post
Share on other sites
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

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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://theseattlearthritisclinic.org/tsac/about/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

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,152
    • Total Posts
      919,607
  • Topics

  • Posts

    • Thanks, I'll check that out. I may have to apply for my own Medicare card in order to get any kind of coeliac-testing done beyond the screen (see above post.)  No, nobody has even mentioned it. I'm unsure if my doctor knows that I do not need to use my hands to vomit, or if she knows about the involuntary vomiting.  I have a part time job at McDonald's and make around $150 per week, which is how I afford to smoke. Mostly, I spend my money on (generally gluten-containing) binge food and cigarettes. I did attempt to start saving money, but then my shifts were cut at work - which meant I had more time to study, but no money, which was kind of pointless. It's complicated. Here in Australia, cigarettes are $25 per pack. These aren't fancy cigarettes either, just your run-of-the-mill Marlboro 20s. Thanks for caring. I am trying to stop I've had the vomiting thing all my life, way before I started smoking. And no, I'm not sure. I know he had an endoscopy and the flattened villi, but I'm not sure if he got a blood test - I assume he would have done, don;t know if it was the full panel. Supposedly he has this FODMAP thing, which I'll admit that I know next to nothing about. Interestingly, people who have to follow low-FODMAP or no-FODMAP diets can't eat gluten either, so there's that. 
    • Would a coeliac screen be the same as a test for antibodies, then? I have no idea why it was even included in my list of tests. It could be my brother, or my symptoms, or both - regardless, I can't say I know too much about the testing.  It's possible that my brother has coeliac disease, I really do worry about it sometimes. He was told to follow a strict low-FODMAP diet by his doctor, and eventually my parents stopped caring. Occasionally they will remind him not to eat things like pasta, greasy foods, etc. because of his condition, but by and large they don't care. He basically just eats whatever he wants. I'm not sure if it affects him or not. However, he isn't shorter than other family members - my dad is 183cm, and my brother is 178cm at the age of 14. Our mother is 173cm.  I do think I have bad digestion, yes. I get gassy and very bloated often, as well as constipated phases (and then following that, diarrhea phases.)  I have tried to ask my mum to call the doctor to get the tests done, but I'm hesitant to mention anything to do with gluten as I know they won't believe me, solely because a good friend of mine has celiac disease. I know they'll think I'm doing it for attention, or to be trendy, when in actual fact I'm just tired of being sick and having no explanation for it other than diet. I'm positive it's not dairy, as I was vegan for a couple of months at one stage. When I went back to eating animal products, I had no issues whatsoever. 
    • He had the IgG ELISA done as well as other blood panels, fecal and saliva tests. He is on an elimination diet right now where foods that score above 0.2 are eliminated for 2-6 months depending on the score, then added back slowly after the detox period.  I am aware that there is a lot of controversy over the IgG, and I'm not here to go into that issue, but I can say with certainty that eliminating the additional foods he reacted to has seen a huge reduction in the symptoms that persisted after cutting gluten and dairy. We will be attempting to add rice back in around October, and see how he does but until then I still need a solution for a baking mix.  I tried to wing it a bit with pumpkin bread today and my attempt was okay but not great. The loaf sank a bit and was overly chewy.  So, to my original question....recipes?
    • Ask the doctor's office!  But usually you can eat right after if you feel like it.  But ask them!  Some of them will try to give you crackers, so you may want to bring some gluten-free applesauce or Rice Chex
    • I'm wondering if he doesn't have an oat problem. He was only dx'd several months ago and really shouldn't use oats for a year after dx. Just thinking out loud. I too am wondering how the rice was picked out of all those other flours to be determined to be affecting him.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

    There are no registered users currently online

  • Member Statistics

    • Total Members
      61,189
    • Most Online
      1,763

    Newest Member
    Raany
    Joined