Joint Pain

[QueenOfPain]

I'm getting close to my 1 year anniversary this September of being gluten-free. All of my problems are much better now. I almost feel like a normal person. "Almost" because I still have this stupid migratory joint pain. I've had it ever since my late teens. It used to just be in my lower body and only occur in one joint at a time before moving elsewhere. It would travel to maybe 3 or so different joints and then the problem would go away for a few months. Well, through the years it started creeping up into my upper body, too. And now over the last several years it's gotten to where the pain can be in 2 or 3 different joints at the same time traveling around all over the place. I usually have some form of joint pain on average 15 days out of any given month.

I would think the frequency would be decreasing by now. But it is not. My joint pain is the whole reason I went to the doctor over a year ago. Every single test they gave me came back negative except for the Celiac test. So, it makes sense that this problem is Celiac-related. I do occasionally get glutened, but it's pretty rare. Everything else has improved just not this.

Is this normal? Does it usually take a long time for the joint pain to disappear? I was misdiagnosed with IBS for 19 years. It took 3 months for my gastro symptoms to subside (which I think is longer than the normal Celiac.) Would a vitamin or supplement help me? Any suggestions or positive thoughts would be greatly appreciated. Sorry for the book!

[Mother of Jibril]

My guess (and keep in mind that this is just a guess, because I'm certainly not your doctor) is that celiac disease is not your only autoimmune disorder. Lupus (SLE), for example, can cause the kind of joint pain that you describe, but it's also notoriously difficult to diagnose... especially in the early stages. I've also been off gluten for almost a year (yeah!) and my problems with joint pain (plus fatigue, swollen lymph nodes, abdominal pain, hair loss, and signs of kidney damage) are actually INCREASING I'm still waiting for some tests... trying to figure out what the heck is going on. BTW... does your joint pain increase at certain times in your menstrual cycle? Mine does, and that's another sign that it might be autoimmune.

[damboyz1]

i just found out 2day that i have it. and i have a ton of joint pain im hoping it will go away or at least lessen. i wish u the best

[The Fluffy Assassin]

I'm getting close to my 1 year anniversary this September of being gluten-free. All of my problems are much better now. I almost feel like a normal person. "Almost" because I still have this stupid migratory joint pain. I've had it ever since my late teens. It used to just be in my lower body and only occur in one joint at a time before moving elsewhere. It would travel to maybe 3 or so different joints and then the problem would go away for a few months. Well, through the years it started creeping up into my upper body, too. And now over the last several years it's gotten to where the pain can be in 2 or 3 different joints at the same time traveling around all over the place. I usually have some form of joint pain on average 15 days out of any given month.

I would think the frequency would be decreasing by now. But it is not. My joint pain is the whole reason I went to the doctor over a year ago. Every single test they gave me came back negative except for the Celiac test. So, it makes sense that this problem is Celiac-related. I do occasionally get glutened, but it's pretty rare. Everything else has improved just not this.

Is this normal? Does it usually take a long time for the joint pain to disappear? I was misdiagnosed with IBS for 19 years. It took 3 months for my gastro symptoms to subside (which I think is longer than the normal Celiac.) Would a vitamin or supplement help me? Any suggestions or positive thoughts would be greatly appreciated. Sorry for the book!

I don't have migratory joint pain, more like a little baby version of my late mom's rheumatism. (I believe she had celiac disease, too.) I've recently cut dairy and fructose (well, fruits and fruit juices anyway) and also started eating steamed vegetables at lunch and dinner by the plateful, and my joint pain has just vanished. It might have been any of these factors (maybe not dairy, given Mother of Jibril's experience) or maybe just all the water I have to drink to get all those freaking vegetables down. Regardless, you may want to try any or all of these approaches. You'll know one way or another very quickly; my results came in less than a week.

Best of luck, and I hope you find your answer soon.

[QueenOfPain]

My rheumatologist did a blood test for Lupus and it came back negative. So I don't think it's that. I'll probably give it another year, and if it's still not better I may go back to the doctor. But I really don't want to go that route, I HATE going to the doctor.

[Lisa16]

Like you I was misdiagnosed for a long time-- 23 years. I have been gluten-free only 1.5 years now and I still have some joint pain, but it is much better. I suspect that it may be one of the last things to go or that it might not go away completely. I also suspect that the longer you had it, the longer it will take to go.

In me it hit the knees, ankles, feet (even the joint by the big toe!), hands (including fingers-- especially the ring finger and pinky), shoulders and hips. Well gosh-- that is almost every joint I guess. The shoulder was debilitating, but the hands were the scariest. When I get glutened, it comes right on back. Some days I limp.

There is a link between celiac and fibromyalgia. Did they also check into that?

Good luck! I hope you figure out something that helps. I take lots of hot baths

[QueenOfPain]

Thanks for all of the tips everyone--keep 'em coming!

Lisa16 I know what you mean. I get this joint problem in the weirdest places sometimes, too. And on occasion it occurs in my tendons behind my knees and in my achilles tendon. I don't think it's fibromyalgia, because the affected area actually gets a little red and slightly swollen and it feels warm to the touch. It's nice to know your problem eventually got better. Hopefully I'll get there, too.

[The Fluffy Assassin]

Thanks for all of the tips everyone--keep 'em coming!

Lisa16 I know what you mean. I get this joint problem in the weirdest places sometimes, too. And on occasion it occurs in my tendons behind my knees and in my achilles tendon. I don't think it's fibromyalgia, because the affected area actually gets a little red and slightly swollen and it feels warm to the touch. It's nice to know your problem eventually got better. Hopefully I'll get there, too.

I was all set to say "hot, red, swollen, painful joints-- that's rheumatoid arthritis" but googled and got back gout instead. Not to say that you have gout (as it's less likely in women) but here's the Mayo Clinic's take: Open Original Shared Link

[kbtoyssni]

I've been gluten-free for four years now and also have migratory joint pain. It's 95% better now that I'm gluten free, but I still have some symptoms. I've been tested for lupus, RA, lyme, etc, and nothing. I just started going to the doc again for it, and I think I'm going to try casein free for a while. I also cut out all soda, MSG, high fructose corn syrup, using plastic tupperware. I figure it can't hurt - my body will be better off without all those chemicals anyway! I wish I could be more helpful, but I unfortunately haven't found a solution yet, either.

[Mother of Jibril]

My rheumatologist did a blood test for Lupus and it came back negative. So I don't think it's that. I'll probably give it another year, and if it's still not better I may go back to the doctor. But I really don't want to go that route, I HATE going to the doctor.

The reason I mentioned lupus is because it's one of the rheumatological disorders, a group that includes Sjogren's Syndrome, rheumatoid arthritis, gout, and vasculitis. As I understand it, the common link between all of these is that the symptoms are caused by antibody-antigen complexes and complement lodging in your organs, joints, and blood vessels. I know this is kind of a mouthful. Antibodies are present with ALL autoimmune disorders... in celiac disease this can include anti-gliaden, ttg, and EMA. In my case, I'm also making antibodies to my thyroid and my mast cells. When the antibodies link up with their target (gluten, or various parts of your body like your intestines) it forms a "complex." Ordinarily, these would be filtered out of your bloodstream, but for various reasons your body can get overwhelmed and the complexes start causing all kinds of nasty problems... pain, aneurysms, kidney damage, etc... The complement system is even more complicated. I don't understand it enough to explain it. All I know is that some people are born with complement deficiencies (a very bad scenario) and some people with autoimmune disorders end up with levels that are either elevated or depleted.

The bottom line... hopefully nothing will ever turn up and your joint pain will get better on its own But, joint pain can be caused by a LOT of things... so if it really starts to interfere with the quality of your life you might want to start exploring. It could take a while to find the cause. Just because your tests were normal last year doesn't mean you're in the clear forever.

BTW... the classic sign of fibromyalgia is pain in certain "trigger points" in the muscles... here's a map:

Open Original Shared Link

[weathertopmama]

I have lupus as well as celiac disease. My mom has rheumatoid arthritis. We've both found that for us, the joint pain only goes away on a sugar-free, grain-free diet.

She's done well on Atkins. My kidneys can't handle all that protein, but I feel 100% better on the Specific Carbohydrate Diet.

Now, if I get out in the sun too long, or get ahold of some MSG, or neglect my diet for a day or two, I'm back to near-crippled status. On the other hand, when I follow the SCD faithfully the improvement is nearly miraculous after just a day or two.

I also use apple cider vinegar and lots of coconut oil every day. They both seem to really help.

[Nancym]

That sounds a bit like Ankylosing Spondylitis, or at least the form of it I had. Did you notice I said "had"? Gluten free helped a lot but I had to get closer to a Paleo diet to really make a big difference. No processed foods, no refined carbs, no sugars, no legumes (or very, very limited), no dairy. I'm not 100% on everything except gluten free, but I am like 98% on most everything else.

I had joint problems in all the obvious joints and even in my ribs! I woke up every morning with a sore back. It got worse laying in bed.

On gluten free it took about a year or 18 months to make a difference. I also gave up dairy products shortly after going gluten-free. I have at times felt like dairy gives me muscle spasms.

I still get some joint pains but it's nothing like it was, feels more like what I imagine normal osteoarthritis is like. I am 50 so that's probably to be expected.

[QueenOfPain]

I've never heard of Ankylosing Spondylitis before. Maybe it could be that. A lot of my symptoms do sound the same. When I have a flare the affected joint(s) get more painful and stiff if I'm sedentary. But if I get up and move around for awhile, they usually losen up a bit. And they usually only get extremely painful and stiff late in the evening or first thing in the morning.

Also, I do have a little bit of lower back pain from time-to-time. Not sure if it's the same type of back pain I've read about associated with AS. Mine happens when I've been standing for several hours. It causes my lower back to ache really bad. I also wake up with an achy back on occasion (especially if I've been sleeping on my back.) But that pain usually disappears pretty quickly.

As for the diet change--I don't know if I can handle that right now. I've just now learned to cope with the gluten-free diet. Don't think I can give up my chocolate and ice cream just yet. But I'll keep that advice in mind. Maybe I'll try exercising and drinking more water for now. Thanks for giving me hope, and for letting me know about AS!

[SabrinaESQ]

I have spent the last two and a half years trying to find the source of my migratory joint pain. I went to tons of specialists, mostly rheumatologists, who diagnosed me with all kinds of things, none of which had any cure or successful treatment. I kind of got brushed off as dramatic, or an exaggerator and was told to just deal with the pain. It used to come and go in cycles, but for the last four or five months it has been constant. I finally went to another doctor to find out what was going on, because I was in so much pain. After several visits - she tested me for Celiac - which was a total shot in the dark. I was positive! An endoscopy confirmed! Finally, a reason for what I was going through, and a simple solution - just change your diet.

After all that pain, I was thrilled to change my diet if that was all it would take. The problem is, I have been gluten free for almost two months and I don't feel any better. The pain is still there, and still strong. I have been on narcotic pain relievers for months to deal with the pain. I was hoping my diet would avoid having to continue these pain killers, but so far I am only growing a bigger tolerance and needed stronger prescriptions.

I see other people on the board saying that recovery is slow and may take a year! Oh I hope my relief won't take that long. Sometimes the pain is all I think about. The pills work fairly well, but they make me really drowsy, give me mood swings, and are very addictive.

Anyone else who can share their joint pain experience would help me. What meds do you use for the pain? How long did it take for the pain to subside? What dietary changes helped/didn't help? Any other tips?

[Jackpru]

I've only been on the diet 2 months and have ME/Chronic fatigue for 25years, joint pains before I started the diet were getting worse but I knew even before going on the diet that if I had any milk products or any of the Nightshade family ie:- tomatoes, white potatoes, peppars, aubergines etc this usually really upset me and made my joints ten times worse. You can eat red potatoes by the way.

If you just tried leaving off milk products for a couple of days to see what happened at least you might have some releif from your pain surely thats better than enjoying eating ice-cream, (or perhaps not!)

Being on this diet is just a minefield. I also have lots of other things popping up that seem to be out of my control but thasts another story, which I will probably ask for advice later.

[oceangirl]

Thank you all for this thread. I have been trying to get help for my son who has complained of intense joint pain for 2 years. (He's 16 and a big guy-6"2" and 225lbs) He is a lobsterman and spends a lot of time on the water in the summer, fall and spring. He's been repeatedly tested for Lyme, rheumatoid (in the family) and other things. We've seen 2 orthopedic surgeons and the only bloodwork that's come up positive is a slightly elevated ANA. The orthopedic surgeon said this can be elevated in lupus or scleroderma but his pediatrician took a "watch and wait" attitude. (we've changed doctors: I'm sick of watching and sick of waiting...) I've seen on the internet that it can be elevated with Lyme and I know Lyme is notoriosly tricky to diagnose. He was tested for celiac (full panel) 2 years ago (I am double DQ 1, types 5 and 6) but it was negative. I'm wondering if I should ask for it again. Currently waiting for bloodwork aimed at targeting many autoimmunes.

Just thought I'd add my thoughts and my curiosity over this mysterious pain as well. Joint pain was one of my awful symptoms pre-gluten free, but I don't have it now unless glutened.

lisa

[Fiddle-Faddle]

Joint pain seems to be easily triggered in susceptible individuals by gluten AND dairy.

I know that's a lot to give up at once, but there are better dairy substitutes than there used to be. Coconut oil and dairy-free margarines are good (Fleishmann's makes a dairy-free margarine that is available at Kosher stores and areas with lots of Orthodox Jewish people), and if you don't like soy milk or are sensitive to soy, rice milk and almond milk are so good, I like them better than regular milk (and I don't have problems with dairy).

Lyme was mentioned in an earlier post. The first symptom of Lyme disease is usually major joint pain. And it IS tricky to diagnose, unless you are in the Boston/Connecticut area, where the doctors seem to be on top of it. Less than half of those diagnosed with Lyme ever develop the "bull's-eye" rash, and a large percentage don't even recall having been bitten by a tick.

If giving up dairy doesn't seem to help the joint pain, I would look into Lyme, but be prepared to have your doctor think you're nuts unless you live in the Boston/Connecticut area.