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Joint Pain


QueenOfPain

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QueenOfPain Rookie

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!

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Mother of Jibril Enthusiast

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 :angry: 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.

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damboyz1 Newbie

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

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The Fluffy Assassin Enthusiast
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.

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QueenOfPain Rookie

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.

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Lisa16 Collaborator

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 :)

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QueenOfPain Rookie

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.

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The Fluffy Assassin Enthusiast
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

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kbtoyssni Contributor

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.

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Mother of Jibril Enthusiast
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

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weathertopmama Rookie

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.

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Nancym Enthusiast

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.

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QueenOfPain Rookie

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!

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  • 2 weeks later...
SabrinaESQ Newbie

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?

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Jackpru Rookie

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!) :rolleyes:

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.

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oceangirl Collaborator

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

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Fiddle-Faddle Community Regular

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.

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    • cristiana
      Thank you for your post, @Nedast, and welcome to the forum. It is interesting to read of your experiences. Although I've not had TMJ, from time to time I have had a bit of mild pain in my jaw, sharp stabbing pains and tingling in my face which appears to have been caused by issues with my trigeminal nerve.  I read that sometimes a damaged trigeminal nerve in coeliacs can heal after adopting a gluten free diet.  I try to keep out of cold winds or wear a scarf over my face when it is cold and windy, those conditions tend to be my 'trigger' but I do think that staying clear of gluten has helped.  Also, sleeping with a rolled up towel under my neck is a tip I picked up online, again, that seems to bring benefits. Thank you again for your input - living with this sort of pain can be very hard, so it is good to be able to share advice.
    • Julie Riordan
      I am going to France in two weeks and then to Portugal in May   Thanks for your reply 
    • Nedast
      I made an account just to reply to this topic. My story resembles yours in so many ways that it is truly amazing. I also suddenly became lactose intolerant, went a little under 10 years attributing all my symtoms to different body parts, never thinking it was something systemic until much later. I had the same mental problems - anxiety, depression, fatigue, etc. In fact, the only real difference in our story is that I was never formally diagnosed. When I discovered that my myriad symtoms, that had been continuous and worsening for years, all rapidly subsided upon cessation of consuming gluten, I immediately took it upon myself to cut gluten out of my diet completely. I live in America, and had lost my health insurance within the year prior to my discovery, so I could not get tested, and I will never willingly or knowingly consume gluten again, which I would have to do in order to get tested now that I have insurance again. But that is not the point of this reply. I also had extreme TMJ pain that began within months of getting my wisdom teeth out at - you guessed it - 17 years old. I was in and out of doctors for my various symptoms for about 5 years before I gave up, but during that time I had also kept getting reffered to different kinds of doctors that had their own, different solutions to my TMJ issue, an issue which I only recently discovered was related to my other symptoms. I began with physical therapy, and the physical therapist eventually broke down at me after many months, raising her voice at me and saying that there was nothing she could do for me. After that saga, I saw a plastic surgeon at the request of my GP, who he knew personally. This palstic surgeon began using botox injections to stop my spasming jaw muscles, and he managed to get it covered by my insurace in 2011, which was harder to do back then. This helped the pain tremendously, but did not solve the underlying problem, and I had to get repeat injections every three months. After a couple of years, this began to lose effectiveness, and I needed treatments more often than my insurance would cover. The surgeon did a scan on the joint and saw slight damage to the tissues. He then got approved by insurance to do a small surgery on the massseter (jaw) muscle - making an incision, and then splicing tissue into the muscle to stop the spasming. It worked amazingly, but about three months later it had stopped working. I was on the verge of seeing the top oral surgeon in our city, but instead of operating on me, he referred me to a unique group of dentists who focus on the TMJ and its biomechanical relationship to teeth occlusion (i.e. how the teeth fit together). This is what your dentist did, and what he did to you was boderline if not outright malpractice. There is a dental field that specializes in doing this kind of dental work, and it takes many years of extra schooling (and a lot of money invested into education) to be able to modify teeth occusion in this manner. Just based on the way you describe your dentist doing this, I can tell he was not qualified to do this to you. Dentists who are qualified and engage in this practice take many measurments of your head, mouth, teeth, etc., they take laboratory molds of your teeth, and they then make a complete, life-size model of your skull and teeth to help them guide their work on you. They then have a lab construct, and give you what is called a "bite splint." It looks and feels like a retainer, but its function is entirely different. This is essentially a literal splint for the TMJ that situates on the teeth. The splint is progressively modified once or twice per week, over several months, in order to slowly move the joint to its correct position. The muscles spasm less, stress is taken off the joint, as the joint slowly moves back into its proper position. The pain reduces each month, each week, sometimes even each day you go in for a visit. The joint has to be moved in this manner with the splint BEFORE the modification to the teeth begins. They then add to your tooth structure with small bits of composite, to keep the joint in its proper place after it has been sucessfully repositioned. Subtracting from your teeth, by grinding down bits of your natural tooth structure, is done very conservatively, if they have to do it at all. This process worked for me - after six months, my face, jaw, neck all felt normal, and I had no more pain - a feeling I had not had in a long time. It also made my face look better. I had not realized the true extent that the spasming muscles and the joint derangement had effected the shape of my face. The pain began to return after a few months, but nowhere near where it had been before. This immense reduction in pain lasted for a little over two years. The treatment still ultimately failed, but it is not their fault, and it is still the treatment that has given me the most relief to this day. Later on, I even went about three years with very, very good pain reduction, before the joint severely destabilized again. This field of dentistry is the last line treatment for TMJ issues before oral surgery on the TMJ. There aren't as many denists around who practice this anymore, and the practice is currently shrinking due to dentists opting for less espensive, additional educations in things like professional whitening, which have a broader marketability. Getting this treatment is also very expensive if not covered by insurance (in America at least). My first time was covered by insurance, second time was not, though the dentist took pity on me due to the nature of my case and charged like a quarter of usual pricing. Most cases seen by these dentists are complete successes, and the patient never has to come back again. But occasionally they get a case that is not a success, and I was one of those cases. A little over a year ago, I began seeing the second dentist who keeps my TMJ stable in this manner. The first dentist retired, and then died sadly. A shame too, because he was a truly amazing, knowledgable guy who really wanted to help people. The new dentist began to get suspicious when my joint failed to stay stable after I was finished with the bite splint and his modifications, so he did another scan on me. This is ten years after the first scan (remember, I said the surgeon saw "slight" damage to the tissue on the first scan). This new scan revealed that I now no longer have cartilage in the joint, on both sides - complete degeneration of the soft tissues and some damage to the bone. The dentist sat me down and had a talk with me after these results came in, and said that when he sees damage like this in cases like mine, that the damage to the joint is most likely autoimmune, and that, in his experinece, it is usually autoimmune. He has sent patients with cases like mine to Mayo Clinic. He said he will continue to see me as long as the treatment continues to offer me relief, but also said that I will probably have to see a dentist for this type of treatment for the rest of my life. He is not currently recommending surgery due to my young age and the fact that the treatment he provides manages my symptoms pretty well. I still see this dentist today, and probably will see this kind of dental specialist for the rest of my life, since they have helped with this issue the most. I did not inform him that I am 100% sure that I have celiac disease (due to my complete symptom remission upon gluten cessation). I didn't inform him because I thought it would be inappropriate due to not having a formal diagnosis. I was disappointed, because I had believed I had caught it BEFORE it had done permanent damage to my body. I had never suspected that my TMJ issues may be related to my other symptoms, and that the damage would end up complete and permanent. Luckily, I caught it about 6 months after my other joints started hurting, and they stopped hurting right after I went gluten free, and haven't hurt since. I of course did the necessary research after the results of the second scan, and found out that the TMJ is the most commonly involved joint in autoimmune disease of the intestines, and if mutliple joints are effected, it is usually the first one effected. This makes complete sense, since the TMJ is the most closely related joint to the intestines, and literally controls the opening that allows food passage into your intestines. I am here to tell you, that if anyone says there is no potential relationship between TMJ issues and celiac disease, they are absolutely wrong. Just google TMJ and Celiac disease, and read the scientific articles you find. Research on issues regarding the TMJ is relatively sparse, but you will find the association you're looking for validated.
    • trents
      Welcome to the forum, @SuzanneL! Which tTG was that? tTG-IGA? tTG-IGG? Were there other celiac antibody tests run from that blood draw? Was total IGA measured? By some chance were you already cutting back on gluten by the time the blood draw was taken or just not eating much? For the celiac antibody tests to be accurate a person needs to be eating about 10g of gluten daily which is about 4-6 pieces of bread.
    • SuzanneL
      I've recently received a weak positive tTG, 6. For about six years, I've been sick almost everyday. I was told it was just my IBS. I have constant nausea. Sometimes after I eat, I have sharp, upper pain in my abdomen. I sometimes feel or vomit (bile) after eating. The doctor wanted me to try a stronger anti acid before doing an endoscopy. I'm just curious if these symptoms are pointing towards Celiac Disease? 
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