Joint Pain After Being gluten-free 2 Years - Could Celiac Still Be Causing That?

[nvsmom]

I thought my joint pain was gone. I really did. For about 11 months my joint pain was pretty minimal. I had some really minor flare-ups in my shoulders and fingers, and my hip pain was not advancing much at all.... BUT I was on a full replacement dose of hydrocortisone, due to suspected "adrenal fatigue", for that time period so I now strongly suspect that it was the steroid keeping my symptoms at bay. Since going off the steroid over a month ago, my pain is creeping back.  My fingers hurt again; it's that annoying pain where it hurts to hold a full coffee mug - dumb things like that. And my hips... oh my goodness, they are becoming a large problem. I'm not one to go to the doctor for much but I'm making an appointment for that. They crack, give out on me, and give me pain when I walk or when I get up from a seated (flexed) position; pain in the groin that radiates down my thigh... Nasty.

 

Anyway, After 2 years gluten-free, I am guessing this is not celiac caused anymore? Any opinions on that? I never gluten myself. I don't eat out and I have no gluten in the house.

 

A year and a half ago I strongly suspected lupus but my blood tests were fine and the rheumy dismissed me. She said it was probably still celiac related and because it improved after being gluten-free longer (and on steroids ) I believed it. I used to have positive ANA's during my 20's but have not for a few years. I'm guessing it is autoimmune in nature because my pain is usually on both sides. One side often is worse than the other but it's still on both sides, and because it just runs me down.

 

My hips could be osteoarthritis but I'm not sure. They were tight and crack, my flexibility is shot now, and they give out on me when I get up. Pain is in the groin... could be osteo but it's in both sides and has come to a problem in only a year and a half with the last month being a surprising decline... and I'm only 40.

 

Any ideas? Time to see a rheumy again?  Time to just suck it up?  LOL I didn't realize the steroids were helping me like that and I'm at a bit of a loss. Thanks.

 

 

[1desperateladysaved]

Hi Nicole,

 

Are you swollen?  I know of a test for this.  Fold your fingertips up against the base of your fingers.  If they touch flat against themselves, they are not swollen, but it they don't reach they are swollen. Try looking up the lymph system.  There are many nodes in the groin.  I am having swelling (but not joint pain).  I removed all of the foods that I had antibodies to, almost every food I ate over the years and my swelling seems to be subsiding.  I mentioned this when you said "Joint pain,"  because while on gluten, I did experience this swelling and joint pain together.

 

I am also 2 years gluten free after decades of symptoms.  I also avoid doctors usually, because the treatments they have given me for years seem worse than the problems I had.  Do you feel your body is in transition still?  I feel mine is even after two years.

 

Dee

[GF Lover]

Hey Nicole,

 

I'm thinking the steroid was masking that too.  They subside your immune system.  Have you had the Bone Density Scan lately?.  Also, get your joints moving by getting in the water.  You have to keep your flexibility up or the joints may "freeze"  I was close to my shoulder doing that.  I do think your immune system is flaring.  When I get a cold or a virus my immune system flares and my joints scream.  You probably want to avoid getting on steroids again but you can get cortisone shots in the burser sacs of the joints.  When I had sacroiliitis and peri-formis syndrome I got shots in my hips.  If they get the shot in the burser sac you should get relief for 3-6 weeks or so.

 

I hope you get this figured out and get some relief Nic.  When the immune system is attacking, it is no fun at all.

 

Colleen

[Celiacandme]

I still feel new to all of this so I don't feel like I can be of help but I wanted to wish you well and hope you get some answers soon. I was diagnosed in November with Celiac's and in March with lupus. I was just hoping the joint issues, sun sensitivity, etc were a result of celiac's. This can all be so confusing. Keep us posted. Do you think your vitamin D levels have lowered or maybe some other vitamin? Just hoping it is something simple for you.

[nvsmom]

Hi Nicole,

 

Are you swollen?  I know of a test for this.  Fold your fingertips up against the base of your fingers.  If they touch flat against themselves, they are not swollen, but it they don't reach they are swollen. Try looking up the lymph system.  There are many nodes in the groin.  I am having swelling (but not joint pain).  I removed all of the foods that I had antibodies to, almost every food I ate over the years and my swelling seems to be subsiding.  I mentioned this when you said "Joint pain,"  because while on gluten, I did experience this swelling and joint pain together.

 

I am also 2 years gluten free after decades of symptoms.  I also avoid doctors usually, because the treatments they have given me for years seem worse than the problems I had.  Do you feel your body is in transition still?  I feel mine is even after two years.

 

Dee

 

No, they don't seem swollen. I tried your fingertip bending test, and I could do it, although it hurts. LOL  

 

At this point, I have no idea what my body is doing. LOL  I had many symptoms improve after going gluten-free like gut bloating, migraines, stomach aches, and plantar fasciitis. I had some things that I thought got better, like hair loss, but it continues to pop up (or off) but to a lesser extent than in my past.

 

I don't feel in transition but things could still be changing I suppose. I did have a mildly positive tTG IgA after a year gluten-free that went to almost normal while I was on steroids so I am guessing my recovery was going slower than most... I'm special. LOL

 

Thanks.

[nvsmom]

Hey Nicole,

 

I'm thinking the steroid was masking that too.  They subside your immune system.  Have you had the Bone Density Scan lately?.  Also, get your joints moving by getting in the water.  You have to keep your flexibility up or the joints may "freeze"  I was close to my shoulder doing that.  I do think your immune system is flaring.  When I get a cold or a virus my immune system flares and my joints scream.  You probably want to avoid getting on steroids again but you can get cortisone shots in the burser sacs of the joints.  When I had sacroiliitis and peri-formis syndrome I got shots in my hips.  If they get the shot in the burser sac you should get relief for 3-6 weeks or so.

 

I hope you get this figured out and get some relief Nic.  When the immune system is attacking, it is no fun at all.

 

Colleen

 

I did have a minor cold a few weeks ago, the type that I used to associate with a flare-up - I think you are right in that something in my immune system is flaring-up and the steroids were probably masking it... I'd really hoped that it was gone after being gluten-free so long. This is a bit disappointing.

 

Thanks Colleen.  

[nvsmom]

I still feel new to all of this so I don't feel like I can be of help but I wanted to wish you well and hope you get some answers soon. I was diagnosed in November with Celiac's and in March with lupus. I was just hoping the joint issues, sun sensitivity, etc were a result of celiac's. This can all be so confusing. Keep us posted. Do you think your vitamin D levels have lowered or maybe some other vitamin? Just hoping it is something simple for you.

 

You were hit with the 1-2 punch of celiac disease and lupus.  I was pretty convinced that I had lupus shortly after diagnosis. After being gluten-free a few months I was hit with a pretty hard flare-up that finally got me into a rheumy. I had many symptoms like a facial rash (could be roseacea), mouth sores (I have some now too - hmph), joint pain, past positive ANAs, and other more minor symptoms but since my tests were all negative, my rheumy said it was probably celiac related, and I hoped she was right... I thought she was right since I hadn't had an obvious flare up for so long. Who knows, maybe she is right.  

 

It is possible that my vitamin levels have dipped. I've really cut back on the amount of vitamins I take. I figured I've been gluten-free for so long that I can probably cut back, plus when I get run down, I tend to forget about the extra effort vitamins require, and also because I have found that taking supplements does not seem to help my nutrient levels much.  For example, my vitamin D is usually a low normal with no supplements, and when I take sublingual D, it is still low normal.  

 

My vitamin levels are usually okay. The only one that ever fell below normal was A. D was the lower end of normal but most everything else was very good.

 

Thanks for the well wishes.  

[GF Lover]

I did have a minor cold a few weeks ago, the type that I used to associate with a flare-up - I think you are right in that something in my immune system is flaring-up and the steroids were probably masking it... I'd really hoped that it was gone after being gluten-free so long. This is a bit disappointing.

 

Thanks Colleen.  

 

I"ll tell you what.  I've been trying to get thru a cold virus for 3 1/2 weeks now.  It has my immune system in an uproar.  Everything hurts and is inflamed.  Hopefully things for you will calm again or else you may have to see about another Autoimmune problem.

 

Colleen

[nvsmom]

I"ll tell you what.  I've been trying to get thru a cold virus for 3 1/2 weeks now.  It has my immune system in an uproar.  Everything hurts and is inflamed.  Hopefully things for you will calm again or else you may have to see about another Autoimmune problem.

 

Colleen

 

Darn spring time flus! Feel better.

 

I forgot to mention that I had a bone density scan about a year ago and it was great - above average. 

[DLL]

I'm a recently diagnosed celiac (beginning of January of this year). I had a long list of symptoms that piled up last fall. Almost all of these symptoms pretty much vanished in days once I was on a gluten-free diet.

One symptom that didn't vanish was joint pain. It did feel like it was slowly improving, so I figured it must be one of those 'the body needs time to heal' sort of things. Otherwise things were great, and I was a much happier fellow as a result.


February hit and I think I got cross-contaminated a couple of times. One night, I came back from a party at my brother-in-law's place. I only picked 'safe items' from the plates provided, but I had no way of knowing if they came into contact with anything else earlier, if separate knives were used, how they were prepared, etc.

I noticed only minor irritability, only minor stomach aches/GI symptoms, and only a minor rash on the inside of each arm. I thought I got off lucky. Maybe I did. Maybe I didn't.

Shortly around that time at the beginning of February, however, the joint pain started to flare up. It flared up with a vengeance—worse than before. I woke up in the mornings feeling like someone had beat me up with a baseball bat.

I had once had joint pain that bad when I was 16-17 (I'm now 44). That eventually went away by the time I was 20 and had been misdiagnosed as rheumatoid arthritis. I sometimes wonder if that could have been an early incident of my present celiac condition, but why would all symptoms go away for years? Around age 28-32 I started to notice odd 'little ailments'... Shortly after returning to Canada in 2006, I began to notice joint pain in my big toes, and a very 'obvious-to-hindsight' pattern of other symptoms accompanying frequent GI symptoms began to occur more and more. By last fall—before my diagnoses—I had pain in my shoulders, wrists, hands, toes, and sometimes my knees.

Anyhow...

So since February, things have been bad with joint pain. Each month, overall, things seem to be better, but there are still bad days or weeks.

- Sometimes there are "crunchy sounding" joints with or without pain.
- The toes and knees sometimes get inflamed without any apparent cause.
- There is sometimes clicking or an otherwise lack of smoothness in some joints
- Some joints, like my wrists and hands can be stiff and hard to move in the mornings but be better later on, while other joints are constant the whole day. The wrists and hands may be aggravated with work-related computer activity.
- Sometimes the pain and inflammation is symmetrical (both hands, both shoulders, etc.) and sometimes it isn't (only one knee but not the other).
- More confusingly, some joints have been bothering me for a long time (my right thumb) while other ones seem to come and go seemingly randomly. The left side of my right knee might be bugging me one day, then the next it's the right side of the same knee or a different knee, then another day it's the knuckles in some fingers or something else that was perfectly fine before and goes back to being perfectly fine later.

- I've also noted that I seem particularly susceptible to colds and flues lately. My wife brushes them off (our daughter brings a new one home every two to three weeks from daycare), while I (formerly good at resisting colds) seem to be laid low in a really bad way every time.


My family doctor has me taking supplements of chondroitin and glucosamine, and while that doesn't seem to do anything for the flare ups it does seem to be helping with the joints slowly healing (I think so at least - here's hoping).

I had bloodwork done to eliminate the possibility of arthritus about a year ago—back before I was diagnosed and was nearly accepted into the Canadian military pending medical approval (later made impossible due to being diagnosed as a celiac). I'm not sure what types of arthritus had been covered by those tests which came back negative, but I'm surprised my doctor hasn't recommend testing for other things just in case I might have something else. I think he feels that all of this is still somehow connected to my celiac condition.
He's been good up until this point, but it still feels baffling to go in and just get told "Well, come back in another three months and we'll see how you are."


Could the joint pain be from multiple incidents of unknown cross contamination? Could I just be getting the joint pain and not any of the other symptoms I had accumulated prior to be diagnosed?
Do I have other food intolerances while my body is still recovering. I think so, have been attempting to narrow things down and have been again noticing some small improvement.

It's really frustrating.

[nvsmom]

Hi DLL. Welcome to the board.

 

Your joint issues sound a lot like mine. My first bout of joint pain was a big one, back when I was around 20 or so. That was the only time I ever had hot swollen joints (that aren't from a sports injury) along with the crazy swelling and a positive ANA. It only lasted a few months and I remember being so overjoyed when it finally went that I was hiking and mountain climbing every other day just to celebrate my health.  LOL

 

I get the crunchy joints but I always attributed that to old injuries. The symmetrical pain is often seen in AI problems; I get that too along with morning stiffness and pains that seem to come and go.... I think it's autoimmune related but there are many possible causes including celiac disease.

 

Could the joint pain be from multiple incidents of unknown cross contamination? Could I just be getting the joint pain and not any of the other symptoms I had accumulated prior to be diagnosed?

It's really frustrating.

 

Some members do get joint pain from eating gluten so that could be your cause. You are also pretty new to the gluten-free diet. It's not uncommon to still be recovering 6 months into the diet. Some of us take years to recover.

 

I think you should give it more time but think about pushing your doctor to test for other things if it doesn't improve.

[GFinDC]

Hi DLL,

 

You could try some food eliminations to see if they affect your joint pain.  Nightshades are one food group that would be good to remove, (peppers, tomatoes, potatoes, eggplant).  Soy is another problem food for many.  It doesn't cost any money to eliminate the foods, and no doctor visit, so it is an easy thing to test yourself on.

[DLL]

Some members do get joint pain from eating gluten so that could be your cause. You are also pretty new to the gluten-free diet. It's not uncommon to still be recovering 6 months into the diet. Some of us take years to recover.

 

I think you should give it more time but think about pushing your doctor to test for other things if it doesn't improve.

 

Thanks!

I wonder if it makes sense for only one of many symptoms to linger or to flare up so intensely. Prior to the diagnoses I had various symptoms. I'm hoping, of course, that I don't have something else along with celiac disease.  

[DLL]

Hi DLL,

 

You could try some food eliminations to see if they affect your joint pain.  Nightshades are one food group that would be good to remove, (peppers, tomatoes, potatoes, eggplant).  Soy is another problem food for many.  It doesn't cost any money to eliminate the foods, and no doctor visit, so it is an easy thing to test yourself on.

Hi,

Thanks! Actually, I had eventually got to one bad week where I tried eliminating white potatoes from consumption. There was noticeable improvement within a few days.

Other things that seem to help, which may not be surprising in some cases:

 

- reduce dairy comsumption

- reduce alcohol consumption

- reduce caffeine consumption

- no soy whenever possible (was never big on it so no loss there)

- drink lots of water

- get regular sleep

- try to otherwise follow an anti-inflammatory diet in addition to a gluten free diet (avoiding sugar when possible, etc,)

[GFinDC]

Hi,

Thanks! Actually, I had eventually got to one bad week where I tried eliminating white potatoes from consumption. There was noticeable improvement within a few days.

Other things that seem to help, which may not be surprising in some cases:

 

- reduce dairy comsumption

- reduce alcohol consumption

- reduce caffeine consumption

- no soy whenever possible (was never big on it so no loss there)

- drink lots of water

- get regular sleep

- try to otherwise follow an anti-inflammatory diet in addition to a gluten free diet (avoiding sugar when possible, etc,)

 

Ahh, well, if it helped for one week, might it not help for a month?  Isn't that an irritating question?   The problem with nightshades is they contain alkaloids that some people can't process well.  Think green potato eyes that they say not to eat cause you'll die.  That's not a joke, they really are bad for you due to the high levels of alkaloids.  But all nightshades have alkaloids of some sort.  Tobacco is another nightshade but people mostly don't eat it.

 

Udi's whole grain bread is potato starch free.  But some of their other products have potato starch.  Potato starch is used in lots of gluten-free products because it is cheap.

 

Sweet taters are a different plant family and you should be able to eat them ok.

 

I say give it 5 months night shade and soy free and see what happens.  It can't hurt you to avoid all those alkaloids for a while.  And it might help a lot!

[kareng]

I had a lot of joint pain & swelling - hips, knees, wrists, shoulders. I started taking some gentle yoga classes and it has made me much more flexible and almost eliminated the joint pain. I actually started with a class for senior citizens because I was so " stiff". They had an opening and let me do it.

[nvsmom]

I had a lot of joint pain & swelling - hips, knees, wrists, shoulders. I started taking some gentle yoga classes and it has made me much more flexible and almost eliminated the joint pain. I actually started with a class for senior citizens because I was so " stiff". They had an opening and let me do it.

I feel like a senior with arthritis today. I scrimmaged with the under 12 boys soccer team I coach for 15 minutes on Thursday and I have been hobbling for the last 24 hours. I really need to get bak into shape and gentle is probably the place to start.  Thanks. 

[janpell]

I also have to be extremely careful with what I eat. Even something like too much fruit, cabbage, or brussel sprouts sends my body in a tail spin. I noticed a big difference going gluten free/elimination diet within four days. It helped me more than my DMARD/Celebrex combo ever did. Unfortunately, gluten free wasn't enough for me. I have to be dairy, soy, protein (rice, pea isolates and the like), nightshade free and very low sugar. Plus I have some things, like I said above, that I know my body doesn't like in excess.  I still cheat with dairy and nightshades occasionally but if I do it more than two/three days I get noticable swelling. I never cheat with gluten as I find it takes longer to clear from my system. One time consumption of the other no-nos I get tightness throughout my joints for two or three days.  It took me almost a year to get flexibility in my fingers to make a fist again and get full range of motion in all my joints. Three years later I am still working on neck/shoulder and back and am almost where I want to be and intend on taking it further.  I was never diagnosed with Celiac (but other AI conditions) and an elimination diet is protocol with Naturopaths so I did it, with hesitation, and was so happy with the results. Luck was on my side because the gluten free "craze" happened shortly afterwards so it was like having someone hold my hand through the process, lol.

[nvsmom]

I probably could try and elimination diet... I'm just loath to do so. I feel like I've given up enough.  LOL   I have been gluten-free for 2 years, dairy-free for a year and a half (although I have switched to dairy light now that dairy is no longer painful to eat).   I am very soy-light (I don't eat a lot of prepackaged foods), and eat less nightshades than the average person but I could cut that out entirely. Now sugar..... that's a problem for me.  LOL I probably should cut it out but i really really do not want to - I would b down to just veggies, meat, nuts, and eggs then.... No fun.  LOL

 

I'll work on that sugar thing...she said grudgingly. 

[DLL]

It seems odd that I only had minor joint pain before being diagnosed (in addition to other symptoms) and I otherwise had a good first month on a gluten-free diet. Then February hits and I start getting (sometimes debilitating) joint point worse than before.

[NatureChick]

I used to have hip pain that was so bad that i could barely walk and pain killers couldn't even take the edge off. Fluoride turned out to be the problem for me. I got it out of my medicine cabinet and quit drinking tap water and haven't had hip pain in years. 

Of course, hip pain can have lots of different causes, but don't forget to consider other things that end up in your body other than food. I'd also consider trying some organic foods to make sure it isn't a reaction to a pesticide, herbicide, or fungicide - and artificial colors and flavors can also trigger autoimmune-type responses.

 

[MermaidPaz]

I agree with several of the posts about elimination.  I can tell you from personal experience that nightshades make the joint pain, general swelling, and inflammation so unbearable that sometimes it's hard to walk if I've been exposed.  It's not much of a sacrifice to give up those few last irritants in order to be able to walk and move properly and pain free.  At least, not in my book. There are plenty of other foods that are good, and by focusing on the physical gain it's easier to see past the food-grieving.  Easier said than done though I understand.

[DLL]

I have to wonder, too, about the duration for getting contaminated. Although, I guess this really deserves to be its own question in a separate thread.

I read and heard some stuff online recently that it really varies from person to person and also depending on what they had. Some people get a reaction that lasts for maybe 4 or 5 days or two to three weeks I've heard, but I've also heard recently of some people having a reaction for as long as up to six months!

Has anyone heard anything like that or know if that might be true?

Maybe that's another possible reason why I've been feeling awful on most days since February (after one good firts month on the gluten free diet). Or maybe it's continued repeated contamination sneaking in somewhere, or new problems with other foods (nightshades were mentioned previously) and so on...