Joints Pains, You Too?

[Lovinglife]

Hello beautiful people. I am excited about using this site.

Quick background: Around 3 years ago I was casually told that I might have Celiac Disease after a blood test. What initially brought me to the doctors 3 years ago was severe knee joint pain.

It is not until now that I am beginning to be really educated about the details of celiac disease. So, I have not been eating properly for almot 3 years. For a little over 2 weeks I have been having serious joint pains, stiffness and soreness thoroughout my entire body. I am seeing doctors because it could possibly be Rheumatoid Arthritis. But, I was wondering if anyone has ever experienced prolonged joint pains, stiffness and soreness as a result of not eating properly? Could it be my body reacting to years of mistreatment? I would love to get some feedback. Peace.

[Emme999]

I had horrible knee pain (bursitis). Over the course of my medical searching (that all of us with celiac disease do while we're trying to figure out what the hell is wrong with us) I found that I have some serious food allergies in March. Once I completely eliminated the food allergens (dairy, beef and gelatin specifically) my knee pain went away completely. One of my doctor friends explained to me that pain can be the result of inflammation in the body due to other things (like food allergies, for example!).

Though finding out about celiac disease helped somewhat (in May), the greatest relief came when I eliminated the allergens completely a few months ago (October). (It took me a while to figure out the gelatin one )

Best luck to you with your knees! I totally understand

- Michelle

[RiceGuy]

Yes, I currently am experiencing knee pain, and some ankle pain as well. It is slowly subsiding though, as I recover from the glutening I had been doing since early childhood. I have been gluten-free for nearly a year now too, so it can take some time depending on the damage. Oddly, the pain started after I went gluten-free. I was still on a downward slide during this time, and it's been only the last month or two that a rebound is finally underway.

Other pains had been coming and going, for most of the past two years if I recall correctly. I'm also still narrowing down certain foods I need to avoid, either perminently or temporarily.

[jerseyangel]

Hi Lovinglife, and welcome! I experienced hip pain that was much worse in the morning. If I woke up with it, I would have trouble just turning over. The other issue was with the joint in my thumb. It would get red and be painful and swollen. These seem to have lessened since I went gluten free 6 months ago. Anyway, glad you found us here --Patti

[happygirl]

Welcome to the board!

I seeing a rheumatologist for my bone and muscle pain-had all the symptoms of severe rheumatoid arthritis....had blood tests, MRI, CT scan, etc etc....was taking arthritis drugs (I was 23 at the time!)....none of it helped. Finally was diagnosed w/Celiac, went on a very strict gluten-free diet and my pain is gone! Only times it comes back is if I get gluten from a hidden source or cross-contamination. I was amazed at how much better I felt when I went on the gluten-free diet. It is one of my worst symtoms when I get any amount of gluten.

Hope that you find some answers-this board will be a great resource for you.

Here's to being pain-free!

[Guest kim07]

  LauraJ said:

Welcome to the board!

I seeing a rheumatologist for my bone and muscle pain-had all the symptoms of severe rheumatoid arthritis....had blood tests, MRI, CT scan, etc etc....was taking arthritis drugs (I was 23 at the time!)....none of it helped. Finally was diagnosed w/Celiac, went on a very strict gluten-free diet and my pain is gone! Only times it comes back is if I get gluten from a hidden source or cross-contamination. I was amazed at how much better I felt when I went on the gluten-free diet. It is one of my worst symtoms when I get any amount of gluten.

Hope that you find some answers-this board will be a great resource for you.

Here's to being pain-free!

Hello LovingLife, welcome to the board!!

I have had pretty bad joint pain, not arthritis, that I know of, thank goodness, but pain that was bad enough to have to sleep with a heating pad on high, (sometimes without the cover) right on this big vein or artery on the top of my foot. I have been gluten free for almost 4 weeks, and I have noticed it go from every night, to hardly ever so far.

I've noticed the difference, just not having that annoying pain in my foot is enough for me to go gluten free!

Anyways, good luck with your knee

Kim07

[Nadtorious]

Love your name, LovingLife!

Bone and joint pain is one of the worst symptoms I have, though it only occurs when I eat something wrong. If you decide to go gluten free (you really should, it makes a world of difference), foods high in Omega 3s will help your joints heal-during my summer race season, I eat salmon everyday and take a couple tablespoons of flax seed meal to speed recovery.

Good luck!

Nadia

[key]

I had bone pain in my legs and hips before going gluten free. THen it got better, but I guess lately I have been glutened several times and it has been back for two months. Very frustrating. I saw my GI and he said that when you get gluten it causes and inflammatory response, which can cause the aching. I am also seeing someone else to rule anything else out. It feels as if I have run a marathon. My legs just ache and I can't keep up whatever activity I am doing. I am hoping it gets better soon. I have three kids and have to keep going.

Monica

[jnifred]

I was diagnosed with clinical RA and/or Ankylosing Spondilitis about 5 years ago, had joint pain and swelling for over 9 years though (tried to ignore it for almost 4). I test negative for every rhuem test ever done on me which baffled my docs, but they said a certain % of people with RA don't have any of the blood or genetic markers, soooooo I was on on sorts of lovely meds for that for almost 5 years.

I've always noticed that my rhuem symptoms were better when I ate right, got rest, etc.etc..... but never associated it with celiacs until about a month ago when my mom saw a show on celiac (even though I have a friend with celiac that I have known for over a year, DUH!) so anyway, I called my friend, did a lot of research, went to her doctor and went off all gluten.

I am now off all my meds and doing just fine so far, of course after looking at my diet I have been eating a very low gluten diet for at least 3-4 years without even realizing it. It hasn't been that hard for me to cut out what little gluten I have been eating for the past few years. Baked goods are my weakness, but I seem to be doing okay using gluten free flour mixes, I bake from scratch a lot anyway, so no biggie there for me.

good luck with your symptoms. It sucks. I went for years not being able to open jars/squeeze shampoo bottles or ice a cake and all that started right after the birth of son #2 when I was a whoppping 25 yo.

[celiaccecilia]

  RiceGuy said:

Yes, I currently am experiencing knee pain, and some ankle pain as well. It is slowly subsiding though, as I recover from the glutening I had been doing since early childhood. I have been gluten-free for nearly a year now too, so it can take some time depending on the damage. Oddly, the pain started after I went gluten-free. I was still on a downward slide during this time, and it's been only the last month or two that a rebound is finally underway.

Other pains had been coming and going, for most of the past two years if I recall correctly. I'm also still narrowing down certain foods I need to avoid, either perminently or temporarily.

I do have a lot of joint pain also, mostly when I have been glutened, but sometimes it seems for no reason at all. I didn't realize that other allergies could cause the joint pain, maybe that is what is causing it, and to think all this time, I just thought I was getting old...

  RiceGuy said:

Yes, I currently am experiencing knee pain, and some ankle pain as well. It is slowly subsiding though, as I recover from the glutening I had been doing since early childhood. I have been gluten-free for nearly a year now too, so it can take some time depending on the damage. Oddly, the pain started after I went gluten-free. I was still on a downward slide during this time, and it's been only the last month or two that a rebound is finally underway.

Other pains had been coming and going, for most of the past two years if I recall correctly. I'm also still narrowing down certain foods I need to avoid, either perminently or temporarily.

I do have a lot of joint pain also, mostly when I have been glutened, but sometimes it seems for no reason at all. I didn't realize that other allergies could cause the joint pain, maybe that is what is causing it, and to think all this time, I just thought I was getting old...

[skbird]

I have been getting some joint discomfort (not full-on pain) in my hand joints and sometimes my feet/ankles. I started getting this last spring after getting glutened. Then I had a flare over the summer and now again I"m having another. I have not been glutened to I don't know what is going on - all my rheumatology labs have been fine except ANA which was positive. I also recently had an MRI of my hands to look for joint erosion. I will find out in two more weeks if they saw anything - there was one spot noticable after the test but the radiologist has to look first.

I am not sure why this is getting to be an issue for me as I am gluten free, but it could be a problem I have because of gluten issues. I hope it's not a big deal - I don't want to have to take meds.

I have heard a lot of anecdotal evidence of people having joint issues when glutened, so it would make sense if you have joint issues now, that if you quit gluten, things might improve.

Best -

Stephanie

[nikki-uk]

  jnifred said:

I was diagnosed with clinical RA and/or Ankylosing Spondilitis about 5 years ago, had joint pain and swelling for over 9 years though (tried to ignore it for almost 4). I test negative for every rhuem test ever done on me which baffled my docs, but they said a certain % of people with RA don't have any of the blood or genetic markers, soooooo I was on on sorts of lovely meds for that for almost 5 years.

I've always noticed that my rhuem symptoms were better when I ate right, got rest, etc.etc..... but never associated it with celiacs until about a month ago when my mom saw a show on celiac (even though I have a friend with celiac that I have known for over a year, DUH!) so anyway, I called my friend, did a lot of research, went to her doctor and went off all gluten.

I am now off all my meds and doing just fine so far, of course after looking at my diet I have been eating a very low gluten diet for at least 3-4 years without even realizing it. It hasn't been that hard for me to cut out what little gluten I have been eating for the past few years. Baked goods are my weakness, but I seem to be doing okay using gluten free flour mixes, I bake from scratch a lot anyway, so no biggie there for me.

good luck with your symptoms. It sucks. I went for years not being able to open jars/squeeze shampoo bottles or ice a cake and all that started right after the birth of son #2 when I was a whoppping 25 yo.

My husband was diagnosed with Psoriatic Arthritis(very similar to Rheumatoid Arthritis but with the skin condition Psoriasis) 4 yrs before dx of celiac disease.

He was negative to rheumatoid factor-and tryed some of the 'nasty' drugs rheumatologists offered him(couldn't tolerate them)

He was also so weak he couldn't open a bottle,jar or even turn on a tap.It used to take him 10 mins to get up and out of a chair.

Fast forward to a year of gluten-free-and he's a different man.He's got all his mobility back-and although he gets 'niggles',it's nothing like the excrutiating pain he used to be in.

[lonewolf]

Wow! This topic hits home for me for sure! About 10 years ago I was almost crippled, with arthritis in almost every joint of my body. I even had a handicapped parking permit. The doctors called it Psoriatic arthritis, since I also have Psoriasis. Everything was the same as Rheumatoid Arthritis except for my bloodwork. To make a long story short, I refused the horrible medications, got food allergy testing, eliminated wheat/gluten, eggs, soy and dairy, beans and a couple other things from my diet and started getting better almost immediately. Today I teach PE, keep up with 4 active kids (I couldn't take care of the 3 I had then by myself) and run triathlons in the summer.

I have recently discovered that gluten is the biggest "trigger" for me - causes joint pain and possibly a kidney condition I've struggled with too. I am fine if I eat my "safe" foods. I had recently started experimenting with adding foods back into my diet, since I was supposed to heal and get over the "allergies". I think that I have had undiagnosed celiac disease for my whole life. Anyway, when I tried to add Spelt back in I started getting joint pain again, my psoriasis flared up terribly and my kidneys started acting up. Needless to say, no more gluten for me and all my kids are being tested later this month.

Liz

[Lovinglife]

hi! thanks for your response. i was wondering when you were diagnosed with celiac disease. hope to hear from you soon.

how would you know if there are other allergies that could be causing the joint pains? i hope to hear from you soon!

thanks for your response. i really hope BOTH of our symptoms clear up. pray or hope for me as i will you. let me know if you find out anything useful. peace.

thank you for the information. for the food allergy testing did you go to a regular allergist or a specialist? hope to hear from you soon. peace.

[Ursa Major]

I have had joint and muscle pains from the age of three, for 49 years. I remember a time when I was about four, when my legs were aching so badly that my mother put a chair over my legs and the blanket over that, because I couldn't tolerate the weight of the blanket on my legs.

The past four years the pains in my legs, feet, arms, hands and back especially got so bad that I was unable to function at all, and was put on codeine 24 hours a day by my rheumatologist, and often had to supplement with extra strength Tylenol as well (and that only took away about 30% of the pain, barely enough for me to sort of function).

Two weeks after starting the gluten free diet I was off all painkillers!!!!!!!! Only when I get accidentally glutened do I need painkillers now (like today, I have a migraine and feel crappy because I sneaked a french fry from my daughter at Dairy Queen, and found out the hard way that they are breaded ).

I am not saying I am pain free yet, that will likely take a while. But I am in less pain now than I was with the codeine just eight weeks ago. And it's getting better all the time.

I tried piano lessons three years ago (I love music, and always wanted to learn to play more instruments, I have played the recorders from age six, but wanted more), but had to stop, because playing for just half an hour would make my hands ache so badly that I felt like screaming for up to a week after, the pain was so bad, even with increased pain killers.

I just ordered myself a violin, because another dream of mine has been to learn to play the fiddle. And by golly, I am now going to give it a try! I also ordered instructional DVDs, CDs and books. I am going to have fun!

[RiceGuy]

  Lovinglife said:

hi! thanks for your response. i was wondering when you were diagnosed with celiac disease. hope to hear from you soon.

I did not seek an "official" diagnosis. All the doctors I went to as a kid were clueless, and only made things worse for me. My own research lead me to finding out that gluten was the main problem I've been dealing with. The improvement after the change in diet is all I need to know.

  Lovinglife said:

how would you know if there are other allergies that could be causing the joint pains? i hope to hear from you soon!

Well, if you are certain that you are totally gluten-free, but still have the pains, then there would have to be some other cause(s). From everything I've read thus far, it seems dairy and/or soy can be a factor for many people. However, since malabsorption/leaky gut can lead to all sorts of other problems, you'd have to take that into account. Basically, avoidng the typical problem foods seems like the best test. Once you get positive results, you could reintroduce some foods one at a time until you find one which causes a problem.

Over time, the intestinal damage is expected to heal, thus making it possible for many foods to be properly digested instead of leaking toxins into the blood, or causing other issues.

[Peter J Liepmann MD]

If you look at Pub-Med, there's a ton of articles about the association between celiac disease and arthritis. About 20% of people with celiac disease have arthritis and vice-versa. Sometimes diet makes a difference. Fish oil (3-4 gms/day) and glucosamine can help too.

(I'm in Highland, NY, FWIW)

[Jnkmnky]

Benzodiazapine caused me to have a prolonged arthritic reaction. It was awful.

[julie5914]

I wake up with a feeling several times a month where it feels like my muscles and tendons are made of glue or setting concrete. This has been for the past year and continues, though I went gluten free in June and dairy free the end of october. I had a low pos. ANA test (1:160) back in the Summer that I asked my doc to recheck and will be hearing back soon. She thinks it was positive because of celiac and that the pain/glue feeling is celiac as well. The two times I remember it the most have been shortly after gluten accidents, but I get them in between when everything should be safe too. I used to never take Tylenol...

[ashish]

in fact Celiac Diseases often brought weekness,pains and stiffness.Symptoms of celiac disease can range from the classic features, such as diarrhea, weight loss.Gernally this disease mostly affects people of European .this diseases can be remove by Excercise.mostly European used Open Original Shared Link because this give fast response

[Nancym]

Hello again! Yes, I am having issues with owies all over. Right now my left jaw and right forearm tendon are the worst. I have been gluten free for 3 months and dairy free for 2.5 days. I'm going to go on a really strict diet of nothing but safe foods (hopefully) and see if it helps. But I have to eat up my fridge contents first.

I'm trying to come up wtih ideas that will be healthy.

I'm thinking: fish, chicken, turkey, yams, broccoli, peas, carrots to start with. Hmmm... sounds horribly bland. Do you suppose garlic is a non-allergenic food?