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Muscle/joint Pain After 6 Years Gluten Free


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#1 frec

 
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Posted 14 April 2008 - 06:30 PM

I have had joint and muscle problems for about six years. My original lower back problems never cleared up and I keep adding new body parts--frozen shoulder, slipped ribs, thoracic spine, aching hands and feet. I know that being glutened causes joint pain in many celiacs but these problems remain constant. I am as vigilant as anyone can be about my diet. I've been off dairy forever and off soy for 5 months. I just spent several months visiting doctors trying to figure out what is going on and I'm not getting very far. I'm not diabetic. My pancreas is apparently normal. I do have fairly advanced osteoporosis/osteopenia but I don't think that explains all this. When I search this website I only find references to body pain when glutened. The scary autoimmune blood tests (ANA, sed rate, RA, and CCP) are all OK, and I am grateful for that. X rays and MRI and CT scans don't show anything. But I still hurt, I still avoid sitting or raising my arms, I still can't bend at the waist, I still ache too much to go out after work...you get the idea. I've lost 15 pounds in the last year and I haven't dieted and I wasn't overweight to start with.

Is there any nutritional lack on the celiac diet that might cause these symptoms? I'm taking buckets of supplements (A B C D K calcium/magnesium, fish oils, digestive enzymes). Does anyone else have this?
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diagnosed with celiac disease in 2002--all test numbers off the charts
dairy free since 2000, soy free since 2007
other food intolerances: citrus, sesame, potatoes, corn, coffee

fibromyalgia, osteoporosis

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#2 CarlaB

 
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Posted 15 April 2008 - 05:02 AM

It sounds like you've covered all the "related" disorders testing. I thought I'd throw this idea out there .... http://www.glutenfre...showtopic=36163
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gluten-free 12/05

diagnosed with Lyme Disease 12/06

#3 CCM

 
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Posted 15 April 2008 - 07:52 AM

I can only add that my joint pain symptoms appear as other food intolerances developed. After gluten, it was dairy, then came potatoes and tomatoes. And if you google things like "arthritis inflammation food" you will come up with lists of aggravating foods such as dairy, caffeine and nightshade family foods (potato, tomato, peppers, eggplant). When I cut them out, the pain goes away. Have you considered going back to a food diary for a while? That is how I determined that many gluten-free foods I was buying had potato flour or potato starch in them.
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#4 RiceGuy

 
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Posted 15 April 2008 - 08:21 AM

I completely agree with CCM on the nightshade thing. A small serving of mashed potatoes literally had me unable to walk for about two weeks. Tomatoes nearly as bad. Also what helped me beyond my expectations was magnesium and sublingual B12. I find I don't absorb magnesium without taking it with something acidic like orange juice.

Hope you get it nailed down soon!
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#5 Nancym

 
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Posted 15 April 2008 - 08:44 AM

You sound a bit like I was. I had started getting "arthritis" in my 20's and by my mid-40's I had joint pain in about every joint but it was transitory and would move around. My muscles spasmed a lot too, especially in my neck and shoulder areas. Even my rib joints hurt sometimes, when I would breathe.

About the same time as I was diagnosed with Ankylosing Spondylitis, AS, (non-fusing variety) I had been on a gluten-free diet for about 6 months. I decided to try some dietary things to see if perhaps it was something that diet could affect. I went with something like The Paleo Diet and eliminated all grains and dairy from my diet. I also started taking substantial Vit. D3 supplements (oil based capsules, not dry). I started getting better, but I was taking drugs for the AS too, so I didn't know what was causing my improvement. After a year or so I decided to try stopping the AS drugs (on my own, my doctor said I would need them for life). The pain never returned.

I've experimented since then and found that the dairy seems to cause my muscles to spasm, as well as give me sinus issues. I also suspect that the D3 might have been helpful too. I've been reading a lot about D3 and autoimmune diseases.

So right now I am following a semi-Paleo diet. No grains except I do make muffins from Rice bran sometimes. The bran because I believe part of the problem is from starches and sugars. Many AS patients follow a low-starch or no-starch diet and have a lot of success with that. Bran is very low in starches and sugars but high in fiber.

It works great for me, and I know a lot of AS patients that are doing similarly and are having wonderful results. I don't know if you have AS or perhaps another autoimmune disease but I would urge you to try to see if you can control it with diet and supplements. It is so much better than the terrible drugs they have out there...

As far as the testing is concerned, I was pretty much negative for everything except slightly positive on ANA. I did come up positive on the genetic test for AS but some people get AS without having that gene (they've recently found 7 other genes but probably don't test for them yet). I never had the blood factors a lot of AS patients get, like raised CRP or IL-6 or ESR, but I sure did hurt. I was lucky to have a rheumatologist that was very familiar with AS and knew that some people, especially women, don't get the bone fusing but have a lot of pain.
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#6 Candy

 
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Posted 06 May 2008 - 07:36 AM

Yep all,my joints been hurtin' since I was 15 and lately my ribs and shoulders feel odd and tight , I couldn't even breath either.I figured I'd been worsening it by not taking a calcium supplement with Vite D which I just started doing.I hadn't been drinking much milk because I couldn't tell how it was making me feel-sometime it's OK ,and sometimes milk makes me feel sick,along with sugar :( ,which I put aside. A year aho I had to drink Lactaid for a few weeks,But I'm trying to simplify my health regimen now-I'm tired of all this. Maybe these joint pains are Sjogrens Disease,which affects the connective tissue,and drys the skin,mouth and eyes. I don't take Vitamin A as it always give me a terrible headache,I'm taking Calcium, D, sometimes C, Sublingual B vitamins which celiacs can absorb,and Amino Acids see http://www.vitabase....-disease.asxp-I found this sit online while I searched for "Vitamins for Celiacs"

Celiacs will have to customize their supplements to their their particular medical needs as we do vary slightly-find what works for you.
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I have DNA ancestry in NW.EUROPE,where CELIAC'S known to be common.

DEC. '05 TESTED POSITIVE for the Celiac GENES HLA-DQ2 , and DQ3 SUBTYPE DQ8
Celiac Negative Endoscopy-Aug.'08 - Diagnosed with Hernia and GERD(Gastric Esophageal Reflux Disease),and prescribed Acid Reducing Medication. I hadn't eaten WHEAT for a year prior to the Endoscopy-maybe that's why result was Negative. I need TTG test to determine Active Celiac Status/

Disgnosed with Sjogren's 9/19/2008- Internist referred me to Eye Doctor and Rheumatologist.

#7 fedora

 
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Posted 06 May 2008 - 09:47 AM

Hi,
I am sorry. I have been posting about my pain too, but yours is worse. I have eliminated nightshades, soy, and corn for now except for a couple of mistakes with tomatoes and corn. I am doing better but my pain ebbs and flows anyways. It never goes away though. I have started working my weak upper body too which helps. I know how frustrating it is. Sometimes it will effect my arms out of nowhere. If the food eliminations don't help I am getting tested for Lyme and other things. Good luck
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gluten . . . Kiss my grits!

pork and beef free- 1994
wheat free or wheat light- 2003
gluten free- January 2008

#8 holiday16

 
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Posted 06 May 2008 - 10:04 AM

I have had joint and muscle problems for about six years. My original lower back problems never cleared up and I keep adding new body parts--frozen shoulder, slipped ribs, thoracic spine, aching hands and feet. I know that being glutened causes joint pain in many celiacs but these problems remain constant. I am as vigilant as anyone can be about my diet. I've been off dairy forever and off soy for 5 months. I just spent several months visiting doctors trying to figure out what is going on and I'm not getting very far. I'm not diabetic. My pancreas is apparently normal. I do have fairly advanced osteoporosis/osteopenia but I don't think that explains all this. When I search this website I only find references to body pain when glutened. The scary autoimmune blood tests (ANA, sed rate, RA, and CCP) are all OK, and I am grateful for that. X rays and MRI and CT scans don't show anything. But I still hurt, I still avoid sitting or raising my arms, I still can't bend at the waist, I still ache too much to go out after work...you get the idea. I've lost 15 pounds in the last year and I haven't dieted and I wasn't overweight to start with.

Is there any nutritional lack on the celiac diet that might cause these symptoms? I'm taking buckets of supplements (A B C D K calcium/magnesium, fish oils, digestive enzymes). Does anyone else have this?


Have you had your vitamin D actually tested? If mine goes low I get all kinds of joint problems. It has to not just be in range, but has to be at the higher end or I have problems. The D test to get is the 25 OH. Also, have you looked at the fibro. diet or have you been evaluated for fibromyalgia? I began to cut out things that were bothering me and found alot of what bothers me were things they recommend you cut out on the FM diet. I do have a link to a presentation with Mary Moeller. If you want to e-mail me I can direct you to it (it's not my webite and I don't want to post it here). I have not listened to all of it yet, but what I heard was really good. My e-mail is not working at the moment, but I can respond as soon as I get it fixed. I thought she had a website, but I can't find it now. I do know she has several books out and her focus is supplementation along with diet.
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#9 GFJudy

 
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Posted 06 May 2008 - 07:21 PM

Have you considered getting tested for a large panel of delayed food hypersensitivities? It is nearly impossible to identify which foods may be causing your symptoms if there are numerous. After being gluten-free for almost 2 years, I noticed that my muscle pain and tightness did not resolve completely. If I accidentally ate gluten, the pain intensified significantly, but even after the really horrible pain subsided, I continued to have a baseline degree of pain in my shoulders, neck, back, and hips. Then I developed other problems like frequently getting colds, having low energy, difficulty breathing, heart palpitations. I cut out dairy, eggs, and yeast and noticed additional improvement, but I would still occasionally get an unexplainable "glutened-like" reaction when I was absolutely certain I had not gotten any gluten. I recently went to see a doctor who recommended that I get tested for a whole panel of delayed food sensitivities, and it showed that I had 28! No wonder I felt lousy. People with celiac are prone to developing additional food sensitivities because we experience a long period of intestinal injury before we get diagnosed. This increases intestinal permeability, and undigested foods end up in the bloodstream, where the immune system recognizes them as foreign antigens and forms antibodies against them. You develop a sort of serum sickness, with antibody-antigen complexes floating around the body. This provokes a tremendous chronic inflammatory state that can affect just about any organ system. The good thing is that once you identify the problem, you can take steps toward healing the gut and unacquiring many of those acquired food sensitivities. Some sensitivities cannot be unacquired, of course, but many can. (For example, because I have been gluten-free for 2 years, I did not have antibodies to wheat, rye, and barley, but I know that I can never eat those grains ever again.) Immuno Laboratories offers a very reliable panel. Check out their website and watch the video testimonies to learn more. http://www.immunolab.../public/198.cfm. Hope this helps!
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#10 fedora

 
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Posted 22 May 2008 - 08:02 AM

Hi,
I went to see my dr. Now I am wondering why I waited so long. He told me I have sticky joints that get stuck. I google this and found Facet joint syndrome. He said it is very common and genetic. I have been unable to find any info on line about it being genetic. My dr. says that having sticky joints is passed down. I do see it in my family, but I am by far the worst. It has to do with suction, but I can't explain that part of it.
My spine curves, almost all of my pain is on one side(common for this), I pop and creak all the time, and I am in pain. I don't know if this could be what you have but you said your shoulder locks. Facet joints are up and down the spine. so the pain can be in the jaw, neck, shoulder, spine, ribs, lower back, hip, and back of thigh. I have it in all of those but the hip and thigh. My main pain is shoulder, neck, and jaw. Mine has effected my knee too. It is sticky on it's own and the hamstring is getting pulled from my sticky facet joints.
He said to treat it I have to do chiropractor, physical therapy, yoga, diet(no gluten and whatever else I can figure out), deep tissue therapy(rolfing, trigger point massage), and anti-infammatory drugs. He said my problem is that although I have done all of these things, I have not consistantly done them all at the same time for a very long time. I have had problems for years so he said it could take years to fix. oh well.
It has ebbed and flowed for me which is why I never saw him about it. I have had my shoulder checked out by a PT and PA before. Nothing showed up as being wrong with the joint. Because there is not anything wrong with it.
I found a website that said no dairy and no sugar. I do think sugar makes it worse for me.

I hope you find out what is going on. I know it is frustrating. Take care,
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gluten . . . Kiss my grits!

pork and beef free- 1994
wheat free or wheat light- 2003
gluten free- January 2008

#11 veggienft

 
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Posted 23 May 2008 - 10:29 AM

A close relative had terrible joint pain and cartilage destruction. She was surfing through an internet bulletin board, and read a post from somebody who had identical symptoms. The poster had cured his symptoms by eliminating ibuprophen.

My relative had been taking increasingly large doses of ibuprophen. She stopped taking Ibuprophen. The joint pain went away, and her cartilage healed.

It was a leap of faith, and it worked. The syndrome had been self-worsening. The more her joints hurt, the more ibuprofen she took, which caused more joint damage, which caused her to take more ibuprofen.........

Studies have shown ibuprofen to cause small intestine "bleeding". I can't imagine bleeding without tissue damage, and that probably means permeability. Maybe that's the link.

But dropping ibuprofen cured her joint damage and pain.

..
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#12 Koffeefreak

 
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Posted 14 March 2013 - 05:24 PM

I have had joint and muscle problems for about six years. My original lower back problems never cleared up and I keep adding new body parts--frozen shoulder, slipped ribs, thoracic spine, aching hands and feet. I know that being glutened causes joint pain in many celiacs but these problems remain constant. I am as vigilant as anyone can be about my diet. I've been off dairy forever and off soy for 5 months. I just spent several months visiting doctors trying to figure out what is going on and I'm not getting very far. I'm not diabetic. My pancreas is apparently normal. I do have fairly advanced osteoporosis/osteopenia but I don't think that explains all this. When I search this website I only find references to body pain when glutened. The scary autoimmune blood tests (ANA, sed rate, RA, and CCP) are all OK, and I am grateful for that. X rays and MRI and CT scans don't show anything. But I still hurt, I still avoid sitting or raising my arms, I still can't bend at the waist, I still ache too much to go out after work...you get the idea. I've lost 15 pounds in the last year and I haven't dieted and I wasn't overweight to start with.

Is there any nutritional lack on the celiac diet that might cause these symptoms? I'm taking buckets of supplements (A B C D K calcium/magnesium, fish oils, digestive enzymes). Does anyone else have this?

My son was just diagnosed with Albright's Hereditary Osteodystophy. It's worth checking into. It attacks your calcium level which would account for your hands trembling and other things. It is a rare disease, I'm still coping with our diagnosis, seeing that I'm the one that gave it to him. He has a serious thyroid problem because it was given maternally, if given PATERNALLY than there is almost never a thyroid issue. It's worth having your calcium level checked!! That was what helped us diagnos him. If you decide to look it up online, the pages that have the best insight are usually the ones that are marked "rare disease" in the site name.

Good luck!!!


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#13 kareng

 
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Posted 14 March 2013 - 05:27 PM

My son was just diagnosed with Albright's Hereditary Osteodystophy. It's worth checking into. It attacks your calcium level which would account for your hands trembling and other things. It is a rare disease, I'm still coping with our diagnosis, seeing that I'm the one that gave it to him. He has a serious thyroid problem because it was given maternally, if given PATERNALLY than there is almost never a thyroid issue. It's worth having your calcium level checked!! That was what helped us diagnos him. If you decide to look it up online, the pages that have the best insight are usually the ones that are marked "rare disease" in the site name.
Good luck!!!


Just an FYI. The original poster hasn't been on this forum since 2009.
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