Gluten free for joint pain?

[MEmama]

Does anyone have experience with going gluten free to reduce joint pain?

I have just tested negative for rheumatoid arthritis, which is good except now the reason for my burning, aching hands is a mystery. My DO recommended going gluten free; honestly I'm skeptical because I don't have any other symptoms of gluten intolerance so it seems like grasping at straws, but if it might help I'll make the commitment.

Does anyone want to share their BTDT stories, whether it was helpful or not? Or have any pro tips to share?

 

 

[Jean in Newcastle]

Yes. Going gluten free has helped my joint pain. I likely have non-Celiac gluten intolerance that doesn’t show up in tests but has made a difference to my quality of life. 

[Spryte]

I’m gluten free for other reasons, but my dear friend IRL is GF for joint pain and swears by it.

[G5052]

I went gluten-free for IBS (total game-changer that way) and noticed less pain in my joints. Not earth-shattering, but better.

[Lady Marmalade]

I have not, but my mom has gone mostly gluten free for joint pain and inflammation.  If she stays diligent, it's literally like night and day for her.  Her joints feel stiff and she can feel the onset of arthritis.  But when she's off the gluten, she feels limber and spry and as an added bonus, she feels more alert.

[Pawz4me]

I bet you already know this, but I'll throw it out just in case: you can have sero-negative RA. About 30 percent of the people who are diagnosed are sero-negative. Apparently some will remain that way, but for some it just means it's early enough in the disease process they haven't yet developed antibodies but eventually will. I'm sero-positive RA and have not yet decided whether or not I want to try a gluten free diet. I may eventually, but from the message boards I hang out on it appears that the majority of people who have tried it got no benefit, or so little benefit they felt it wasn't worth the effort. My hairdresser has some other type of arthritis and she does think being gluten free helps her.

[ScoutTN]

I was having pain, especially in the morning or after a longish time in one position. I dropped grain and sugar, and the pain went away.

[Kathy in Richmond]

My husband went gluten free a few months ago for other reasons, but he's found that his joint pain is much reduced as a bonus.

[prairiewindmomma]

About 30% of people with RA are seronegative. The fact that it is in your hands sets off alarm bells for me. 

I am seronegative, and I would suggest that if it is a DO running the tests to go see a rheumatologist. 

I did a 12 week GF/CF/no nightshades trial and it did nothing for me. Likewise a longer term heavy duty round of probiotics did not help. 

I think those are all lovely things to try but there is overwhelming evidence that strong disease modifying medication in early arthritis changes the lifelong course of the disease for the better AND that that is particularly true if you are seronegative. I was lucky to have my first rheumatologist be part of an early arthritis program. I still have no radiological evidence of disease and I am a decade in. (That is not true for the vast majority of others with RA.) 

Don’t wait too long to see a specialist.

[MEmama]

10 minutes ago, Pawz4me said:

I bet you already know this, but I'll throw it out just in case: you can have sero-negative RA. About 30 percent of the people who are diagnosed are sero-negative. Apparently some will remain that way, but for some it just means it's early enough in the disease process they haven't yet developed antibodies but eventually will. I'm sero-positive RA and have not yet decided whether or not I want to try a gluten free diet. I may eventually, but from the message boards I hang out on it appears that the majority of people who have tried it got no benefit, or so little benefit they felt it wasn't worth the effort. My hairdresser has some other type of arthritis and she does think being gluten free helps her.

I had not heard of this. Thanks for bringing it to my attention--there's going to be a lot to research.

So far I have only talked with my DO about the results but will talk with my PCP next month. I'm guessing she will make the same suggestion. 

[MEmama]

3 minutes ago, prairiewindmomma said:

About 30% of people with RA are seronegative. The fact that it is in your hands sets off alarm bells for me. 

I am seronegative, and I would suggest that if it is a DO running the tests to go see a rheumatologist. 

I did a 12 week GF/CF/no nightshades trial and it did nothing for me. Likewise a longer term heavy duty round of probiotics did not help. 

I think those are all lovely things to try but there is overwhelming evidence that strong disease modifying medication in early arthritis changes the lifelong course of the disease for the better AND that that is particularly true if you are seronegative. I was lucky to have my first rheumatologist be part of an early arthritis program. I still have no radiological evidence of disease and I am a decade in. (That is not true for the vast majority of others with RA.) 

Don’t wait too long to see a specialist.

Thanks. I'll definitely talk with my PCP about taking that step. Of course I would *prefer* to get rid of the pain naturally, but I'm not at all opposed to taking medications when necessary and to prevent further problems. This feels like a scary new world. :(

[HollyDay]

Yes.  This is why I went gluten free.  I have spondylolisthesis which causes chronic pain.  The PT recommended I go gluten free just over a year ago hoping it would reduce inflammation.  And it did!  I still have pain, but nearly as bad.  I haven't had a pain flare (saying that quietly) since going gluten free.  I've taken very little NSAID and can rely on tumeric now for pain relief. 

Oldest dd went GF on the recommendation of her doctor hoping to help her severe eczema.  And it did!!  Her eczema is better than it has ever been.  She also lost 15 lbs in just over a month!!  She substitutes GF breads, muffins, etc for wheat varieties so it couldn't have been a calorie "thing."  Often GF is higher in calories than their wheat counterpart.  She also started sleeping better and having more energy. 

By the way....I did NOT lose weight, even though I did not substitute so I wasn't eating GF breads, muffins, cookies, etc.

Youngest dd went gluten free because the household did.  She has reported feeling better and having less pain in her hands. 

Dh is gluten free at home (again, due to how I stock the pantry).  He is not gluten free at work or outside the home.  He has not reported any differences.

[Pawz4me]

16 minutes ago, prairiewindmomma said:

 

 

I think those are all lovely things to try but there is overwhelming evidence that strong disease modifying medication in early arthritis changes the lifelong course of the disease for the better AND that that is particularly true if you are seronegative. I was lucky to have my first rheumatologist be part of an early arthritis program. I still have no radiological evidence of disease and I am a decade in. (That is not true for the vast majority of others with RA.) 

Don’t wait too long to see a specialist.

Absolutely to the DMARDs. My mother mostly ignored her RA until it became impossible. She had a fear of the medical establishment and thought she could treat it with fish oil, glucosamine and things like that. I saw first hand the long term consequences of that, and it's not a road I would ever choose to go down. I'll be working closely with a rheumatologist for the rest of my life.

Not to derail, but I didn't know that DMARDs worked better for those who are sero-negative. Is it because the disease process usually tends to be less severe than for those of us who are sero-positive?

MEmama, I have a rheumatologist appointment tomorrow. I've been meaning to get his thoughts on dietary interventions, so I'll try to remember to ask and report back.

[Pawz4me]

20 minutes ago, MEmama said:

Thanks. I'll definitely talk with my PCP about taking that step. Of course I would *prefer* to get rid of the pain naturally, but I'm not at all opposed to taking medications when necessary and to prevent further problems. This feels like a scary new world. :(

Hugs. It is scary. I'm still trying to wrap my head around it.

[MEmama]

12 minutes ago, Pawz4me said:

Absolutely to the DMARDs. My mother mostly ignored her RA until it became impossible. She had a fear of the medical establishment and thought she could treat it with fish oil, glucosamine and things like that. I saw first hand the long term consequences of that, and it's not a road I would ever choose to go down. I'll be working closely with a rheumatologist for the rest of my life.

Not to derail, but I didn't know that DMARDs worked better for those who are sero-negative. Is it because the disease process usually tends to be less severe than for those of us who are sero-positive?

MEmama, I have a rheumatologist appointment tomorrow. I've been meaning to get his thoughts on dietary interventions, so I'll try to remember to ask and report back.

I'd be interested in hearing what they think. I imagine there are so many variables.

[prairiewindmomma]

33 minutes ago, Pawz4me said:

Absolutely to the DMARDs. My mother mostly ignored her RA until it became impossible. She had a fear of the medical establishment and thought she could treat it with fish oil, glucosamine and things like that. I saw first hand the long term consequences of that, and it's not a road I would ever choose to go down. I'll be working closely with a rheumatologist for the rest of my life.

Not to derail, but I didn't know that DMARDs worked better for those who are sero-negative. Is it because the disease process usually tends to be less severe than for those of us who are sero-positive?

MEmama, I have a rheumatologist appointment tomorrow. I've been meaning to get his thoughts on dietary interventions, so I'll try to remember to ask and report back.

This is a question that they are currently running a lot of studies on. While it's true that people who are sero-negative tend to have a milder disease course, it also appears that sero-negative arthritis as a wholly different subtype of rheumatoid arthritis may respond differently to medications. It's one of the reasons that a lot of rheumatologists are looking at VECTRA DA scores. They are finding that we have different marker subtypes.  I believe we will probably see targeted biologics based on these subtypes in the next generation---once they figure out what exactly is going on.

Previous protocols treated RA like a monolithic disease and didn't account why some people respond better to certain medications. (There are actually fairly high failure rates on some medications, and fairly predictable failure points when some medications "stop working" for people.) Not every rheumatologist is well versed on this, but my last rheumatologist taught rheumatology and we had some awesome conversations. 

There's some evidence that a lot of us sero-negative people also flicker back and forth to RF positive, but may not remain RF positive.  It's way more important that they look at our overall inflammation levels (ESR, CR-P, etc.) and on our joint scores and so on than that we have a positive or negative RF test.

[Junie]

I have had RA for 12 years.

I went gluten-free 10 years ago and it absolutely helped my RA -- for about 8 years.

The symptoms were never gone, but they were better.

Then, about 2 years ago, everything came roaring back.  I *literally* couldn't stand to make dinner.  I have severe joint damage.  My wrists are completely locked.

 

I avoided medication for 10 years.  I think medication early is the best way to treat this monster.  (I chose to not take meds because I wanted more babies.)  Now, at least one medication (Enbrel, the one I am currently taking) is allowed to be prescribed to pregnant women.  Ten years ago that was not the case.  ?

 

I wanted to treat my RA as naturally as possible, but it really doesn't work long-term.

[1GirlTwinBoys]

MY DH is gluten free. One of the negatives for him is joint pain if he eats gluten, among a few other symptoms. You would probably notice a difference within 4 days of being 100% GF.  Not a bite!

[prairiewindmomma]

4 minutes ago, Junie said:

 

 

I avoided medication for 10 years.  I think medication early is the best way to treat this monster.  (I chose to not take meds because I wanted more babies.)  Now, at least one medication (Enbrel, the one I am currently taking) is allowed to be prescribed to pregnant women.  Ten years ago that was not the case.  ?

 

I wanted to treat my RA as naturally as possible, but it really doesn't work long-term.

I tried to hit the sad face emoticon, but it won't work. ? 

I took Plaquenil/hydroxychloroquine through my last two pregnancies.  It's considered Class C for pregnancy, and has some long term studies out there on use in pregnancy. The drug will build up in the baby's eyes, but their body will clear it about 3 months after delivery/nursing. I chose to nurse those babies 3 years each. They have had no issues (we had their eyes check by pediatric opthamologists just in case--no evidence of buildup). It's actually more of a risk to the baby in utero for a mother to flare.  I mention this because some older rheumatologists do not know that there are safe medications for women who want to continue building their families.... It's obviously a very personal decision for each family what they will do, and many mothers do forego all medication or limit their family size, but I wanted to toss that info out there for those who are reading in and not aware.

[itsheresomewhere]

I tried it and it didn’t work for me.  Everyone is different so maybe it might work for you. 

[Junie]

57 minutes ago, prairiewindmomma said:

I tried to hit the sad face emoticon, but it won't work. ? 

I took Plaquenil/hydroxychloroquine through my last two pregnancies.  It's considered Class C for pregnancy, and has some long term studies out there on use in pregnancy. The drug will build up in the baby's eyes, but their body will clear it about 3 months after delivery/nursing. I chose to nurse those babies 3 years each. They have had no issues (we had their eyes check by pediatric opthamologists just in case--no evidence of buildup). It's actually more of a risk to the baby in utero for a mother to flare.  I mention this because some older rheumatologists do not know that there are safe medications for women who want to continue building their families.... It's obviously a very personal decision for each family what they will do, and many mothers do forego all medication or limit their family size, but I wanted to toss that info out there for those who are reading in and not aware.

Thank you.  I had forgotten about Plaquenil.  I tried it and it didn't work for me.

[MEmama]

1 hour ago, 1GirlTwinBoys said:

MY DH is gluten free. One of the negatives for him is joint pain if he eats gluten, among a few other symptoms. You would probably notice a difference within 4 days of being 100% GF.  Not a bite!

That's much faster than I would have thought. My DO suggested a minimum of 30 days; when I make the leap I'll commit to at least that long. But it is reassuring to know I might feel some difference sooner than that. Less pain is a big motivator for sure! 

[mom@shiloh]

One of my ds was diagnosed with juvenile rheumatoid arthritis as a teenager.  He only had problems in one knee, but that knee would swell to 4 times its size even though he wasn't participating in sports at the time, and didn't do anything to aggravate it.  Long story short  -- after trying LOTS of things, our last resort was going gluten free.  It worked.  It was the only thing that helped at all.  He continued GF for about 9 months, and then we started introducing it again, and he was fine.  He was able to tolerate gluten and the JRA didn't return.  Honestly, it makes no sense to me, but it did work.  

[KungFuPanda]

7 hours ago, MEmama said:

Does anyone have experience with going gluten free to reduce joint pain?

I have just tested negative for rheumatoid arthritis, which is good except now the reason for my burning, aching hands is a mystery. My DO recommended going gluten free; honestly I'm skeptical because I don't have any other symptoms of gluten intolerance so it seems like grasping at straws, but if it might help I'll make the commitment.

Does anyone want to share their BTDT stories, whether it was helpful or not? Or have any pro tips to share?

 

 

A friend whose only symptom was joint pain eliminated it by giving up night shades. That might be an easier thing to try than GF. Just tonight she was telling us she found a “tomato” sauce made with carrots and beets that she’s happy with. 

[Ellie]

9 hours ago, MEmama said:

Does anyone have experience with going gluten free to reduce joint pain?

I have just tested negative for rheumatoid arthritis, which is good except now the reason for my burning, aching hands is a mystery. My DO recommended going gluten free; honestly I'm skeptical because I don't have any other symptoms of gluten intolerance so it seems like grasping at straws, but if it might help I'll make the commitment.

Does anyone want to share their BTDT stories, whether it was helpful or not? Or have any pro tips to share?

You could consider the Autoimmune Protocol (AIP), because it could be gluten causing your pain, but it could be other things, as well. AIP eliminates all grains (there goes your gluten, but it means *all* grains, such as rice and corn), nightshades, nuts/seeds, beans, eggs, and dairy in the initial elimination phase. I have Hashimoto's, and some of those foods are known to cause problems for autoimmune sufferers. Turns out that the only thing that bothers me is dairy.

[Ausmumof3]

I’m not properly gluten free but reducing my overall bread and carb consumption for other reasons helps with aching joints and I’m assuming reducing them is mostly reducing the gluten levels a bit.

[Chris in VA]

Totally unscientific on my part, just throwing this out there--

I get a little stiff when I eat a lot of corn, like having popcorn or a lot of corn chips. The next day I notice a mild stiffness in my joints. So maybe watch corn syrup, and corn products? Don't know if that is helpful to you or not. 

[MEmama]

5 hours ago, Ellie said:

You could consider the Autoimmune Protocol (AIP), because it could be gluten causing your pain, but it could be other things, as well. AIP eliminates all grains (there goes your gluten, but it means *all* grains, such as rice and corn), nightshades, nuts/seeds, beans, eggs, and dairy in the initial elimination phase. I have Hashimoto's, and some of those foods are known to cause problems for autoimmune sufferers. Turns out that the only thing that bothers me is dairy.

Dairy was the other idea my DO mentioned to try cutting out. I eat so little of it I can't imagine it's the source of my pain, but who knows. If GF doesn't work, I'll look at other options like that and the AIP you mentioned.

To make it even more fun, we are also vegetarian (well, DS and I are more flexible but only to a point, DH is not able to be flexible yet) AND low carb for DH's health. I'm not sure what's left to cook!

[MEmama]

42 minutes ago, Chris in VA said:

Totally unscientific on my part, just throwing this out there--

I get a little stiff when I eat a lot of corn, like having popcorn or a lot of corn chips. The next day I notice a mild stiffness in my joints. So maybe watch corn syrup, and corn products? Don't know if that is helpful to you or not. 

I have a friend who reacts badly to corn, though in other ways. I don't eat much--only tortillas.

Unfortunately this is a persistent, chronic pain with the stiffness located only in my hands, along with markedly less strength in them. I do have a few other weird pains that may or may not be related but it's the hands that have me most concerned. Some days I'm barely able to hold on to things, it's crazy. 

[Pawz4me]

 

1 hour ago, MEmama said:

Unfortunately this is a persistent, chronic pain with the stiffness located only in my hands, along with markedly less strength in them. I do have a few other weird pains that may or may not be related but it's the hands that have me most concerned. Some days I'm barely able to hold on to things, it's crazy. 

That's a common way--probably THE most common way--that RA presents. My finger issues occurred on and off for several years and were always blown off by my primary care providers as "just" OA even though my mother had RA (which significantly increased my odds of developing it) and even though I'd already been diagnosed with Hashi's (having one AI issue increases the risk of developing others). My inflammation markers, ANA and RF were first tested five or six years ago and nothing jumped out. Then this past winter the finger pain, inflammation and swelling showed up, stayed and worsened. Over a matter of months the pain and inflammation spread to my thumbs, wrists, toes, ankles, elbows and shoulders. I tested high positive for RF and my inflammation markers were elevated. My rheumy said I had a classic presentation.

The thing with RA--and the main issue I have in attempting to treat it with food elimination or other "natural" means--is that it's way more than just joint pain. It can affect your heart, lungs, eyes, vascular system and several other areas. And a lot of those can be mostly silent until damage is severe. So . . . even if eliminating particular foods/groups of food helped the joint pain, I'd still stay on medication.

[MEmama]

19 minutes ago, Pawz4me said:

 

That's a common way--probably THE most common way--that RA presents. My finger issues occurred on and off for several years and were always blown off by my primary care providers as "just" OA even though my mother had RA (which significantly increased my odds of developing it) and even though I'd already been diagnosed with Hashi's (having one AI issue increases the risk of developing others). My inflammation markers, ANA and RF were first tested five or six years ago and nothing jumped out. Then this past winter the finger pain, inflammation and swelling showed up, stayed and worsened. Over a matter of months the pain and inflammation spread to my thumbs, wrists, toes, ankles, elbows and shoulders. I tested high positive for RF and my inflammation markers were elevated. My rheumy said I had a classic presentation.

The thing with RA--and the main issue I have in attempting to treat it with food elimination or other "natural" means--is that it's way more than just joint pain. It can affect your heart, lungs, eyes, vascular system and several other areas. And a lot of those can be mostly silent until damage is severe. So . . . even if eliminating particular foods/groups of food helped the joint pain, I'd still stay on medication.

Thank you for the information--you are giving me a lot to talk about with my doctor. I have an appointment in a month, but I'm wondering if I should try to get in sooner. 

I totally agree about not relying on treating serious issues with just diet alone. At this point, because I haven't been diagnosed with anything yet,  I am curious if I can reduce inflammation and pain until I do get further tested and hopefully get some answers. I'm far from convinced this is a food intolerance issue since I do t have any other indicators (intestinal, skin, etc) but I'm willing to try in the meantime. 

[lailasmum]

This is all really interesting to me. I've had joint issues for years that don't seem to get any clear diagnosis just arthritis. All my tests come back normal. I've just come across Palindromic Rheumatism and that seems to fit my symptoms. I've tried cutting out things and nothing seems to help my joints all though it helps other things. I've discovered I do have some food intolerances just nothing as clear-cut as no gluten or no dairy etc. 

[1GirlTwinBoys]

17 hours ago, MEmama said:

That's much faster than I would have thought. My DO suggested a minimum of 30 days; when I make the leap I'll commit to at least that long. But it is reassuring to know I might feel some difference sooner than that. Less pain is a big motivator for sure! 

It really depends on the person I guess.  DH was experiencing digestive issues also and said he felt like a different person after two days. It's a process though and different symptoms may take longer to see improvement. It's extremely important to not consume any gluten if you're doing an elimination trial. If my DH accidentally consumes some it's a 3-4 day detox for him to feel back to normal. 

[Jean in Newcastle]

I do want to point out that sometimes it isn't a complete elimination of the pain but just less pain.  At least that is the way it is for me.  But less pain is worth it, in my opinion. 

[Pawz4me]

19 hours ago, MEmama said:

I'd be interested in hearing what they think. I imagine there are so many variables.

My rheumatologist said some of his patients who try a gluten free diet do report reduced joint pain. He hopes more studies will be done. He didn't encourage trying it but neither was he against it. He said that in his opinion the majority of his patients would be better served by following a well balanced vegetarian diet with the emphasis on consuming a lot of veggies and avoiding/limiting processed foods rather than by concentrating on eliminating gluten.

He surprised me a bit (in a very good way) in that he was very willing, almost eager, to talk about dietary interventions.

He's also has a very favorable opinion about yoga for arthritis patients.

[Kanin]

 

5 hours ago, lailasmum said:

This is all really interesting to me. I've had joint issues for years that don't seem to get any clear diagnosis just arthritis. All my tests come back normal. I've just come across Palindromic Rheumatism and that seems to fit my symptoms. I've tried cutting out things and nothing seems to help my joints all though it helps other things. I've discovered I do have some food intolerances just nothing as clear-cut as no gluten or no dairy etc. 

Me too!  This sero-negative stuff is really interesting to me. I've had joint pain in my wrists and fingers for over a decade, but no test results have ever been positive. The pain flares up and down sporadically, and only a few times has it been truly bad - maybe 3 times over 10 years? Those times it was challenging to write, type, hold things. Most of the time it's mildly apparent at most. X-rays over the years have shown nothing, too. I was strictly gluten-free for about 7 years, and it didn't seem to have any effect... although, who knows, maybe it prevented some damage!

I hope you find something that works for you!

[prairiewindmomma]

2 hours ago, Pawz4me said:

My rheumatologist said some of his patients who try a gluten free diet do report reduced joint pain. He hopes more studies will be done. He didn't encourage trying it but neither was he against it. He said that in his opinion the majority of his patients would be better served by following a well balanced vegetarian diet with the emphasis on consuming a lot of veggies and avoiding/limiting processed foods rather than by concentrating on eliminating gluten.

He surprised me a bit (in a very good way) in that he was very willing, almost eager, to talk about dietary interventions.

He's also has a very favorable opinion about yoga for arthritis patients.

Mine advises much the same re: diet.  In addition to yoga, my rheumatologists have also pushed me towards aqua activities--aqua zumba, aqua aerobics, swimming, etc. because it's all low impact but a way to build/maintain muscle and get the cardiovascular system going.

[lailasmum]

18 hours ago, Mainer said:

 

Me too!  This sero-negative stuff is really interesting to me. I've had joint pain in my wrists and fingers for over a decade, but no test results have ever been positive. The pain flares up and down sporadically, and only a few times has it been truly bad - maybe 3 times over 10 years? Those times it was challenging to write, type, hold things. Most of the time it's mildly apparent at most. X-rays over the years have shown nothing, too. I was strictly gluten-free for about 7 years, and it didn't seem to have any effect... although, who knows, maybe it prevented some damage!

I hope you find something that works for you!

You might find it worth looking up Palindromic Rheumatism. It definitely seems to be a bit of a catch-all for people who don't fit neatly into RA or other things and so far some of the people I've talked to who have been diagnosed with it have gone on to get re-diagnosed with RA or other autoimmune things after a few years, but it does also seem to fit a big group of people with different joint issues that come and go and are just a bit different than RA, tests don't show anything etc. Does seem like it's not known if it's early stages of other things or distinctly its own diagnosis.