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I've been Gluten free for about 8 months now. But lately I've been having alot of joint pain. I hear that Celiac can cause this and I was wondering what everyone does for the pain? I'm not one of those people that runs to the doctor for a Rx for pain meds. But I also don't want to be taking Aleve and stuff all the time. Does anyone take Glucosimen (sp?) or anything else like that? I'm just getting frustrated. Some days my fingers are fine and I can get my wedding ring on and off. Other days its a struggle. Please help! :ph34r:

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This is my son's biggest symptom. Are you 100% sure that you are 100% gluten-free and not getting cross-contaminated? Our son stopped getting glutened when we switched to GAPS and deep-cleaned. We haven't tried meds at this point so I don't know.

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You know I prolly have been contaminated. I"m still under the impression as I was as a kid that its just an allergy thing. I have to get into the mode of its an autoimmune disease and go from there. Its kindof scary

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I think "domestic activist" is on to something. It could be CC with gluten that is still bothering you. However it also could be that you are sensitive to something else in addition to gluten.

A good friend of mine for instance has to be casein free to feel OK. He also has a couple of hard to get rid of bacteria that have chronically messed him up. He is in the process of getting rid of them by taking olive leaf tea and a mix of herbs (biocidin extract??). It also helps him to take dandelion tea and other detox herbs fairly regularly along with marshmallow root tea. Being completely off all gluten plus avoiding sugar and heavy starches as well as fruit also really seems to help him. His mother had RH--and his body veers in that direction. However through diet and herbs he has avoided contracting out and out arthritis.

I too have joint pain though for me its due to an old injury on my L-5 vertebrae plus my sacrum easily goes out of joint (from the same accident I had as a child). I thus often can get intense sciatic nerve pain. I often use what is called a Sacro Wedgy to get back into joint; however it does not always work--nor is it always enough.

It is complicated by the fact I also have MS like symptoms. The myelin sheath on my nerves had degraded to 50% a couple of years ago before I went completely gluten free. Whereas I am much improved since then I still have problems with my nervous system. My body thus often aches at night when I go to bed plus I get jolts of nerve pain and itchy tingling. Part of this is due to salicylic acid sensitivity (SA) and part of this seems to be the MS "talking."

Walking and yoga help a lot--though sometimes unfortunately I don't have time to take a long walk in a particular day, and then I often have to pay for not doing so afterwards by a sleepless night. The yoga and stretching are good but usually don't do the whole thing. Taking a hot bath with some epsom salts can help a lot too--but again the effects don't seem to be long lasting enough for me by itself.

I am severely sensitive to aspirin and salicylic acid; so NSAIDS are out for me, as well as unfortunately most herbs. Of course seeing a chiropractor helps, but I can't afford to do that every week. A good milk/gluten/corn free muscle relaxant might help--though again I don't want to take things with opiates too often either.

Occasionally I will take Aleve like you do, but I agree, its not something that one should take every day. Plus its not as effective as it might be. For some reason I didn't think of the Aleve--so am going to try it now and hope it helps relieve the pain.

I am actually thinking I should also either find or somehow devise some gluten, corn and milk free homeopathics to help deal with this better.

I don't know if this sleepy eyed rambling of mine will help you or not. However it has helped me to nut some things out. Good luck to you in any case!

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I used to have joint pain in my shoulders and knees. Most of it is gone now. I stopped eating nightshades and soy and the pain cleared up. The only area that I continued to have some pain was my right shoulder. That is mostly gone now though. I went to a Chinese Kung Fu shop a while back and got some King Arthritis Buster, an herbal remedy for arthritis. I took those for 3 days and my right shoulder pain is mostly gone now. I can't swear that I know those pills helped but it was the only thing I changed in that time period.

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I have several sleepless nights. I get pain in my knee and when I crack them the pain sometimes goes away. I know I need to walk more but its hard sometimes. I was told to possibly see a immunologist. Does anyone else see one to get answers? I too have some MS symptoms. My father was diagnosed with it a couple of years ago and just talking to him its like hmm i have that too. I should go and get tested for MS too but then the symptoms go away. I don't get the stomach symptoms with Celiac so its hard to figure out if i have been CC. So frustrating and tiring at the same time.

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I have several sleepless nights. I get pain in my knee and when I crack them the pain sometimes goes away. I know I need to walk more but its hard sometimes. I was told to possibly see a immunologist. Does anyone else see one to get answers? I too have some MS symptoms. My father was diagnosed with it a couple of years ago and just talking to him its like hmm i have that too. I should go and get tested for MS too but then the symptoms go away. I don't get the stomach symptoms with Celiac so its hard to figure out if i have been CC. So frustrating and tiring at the same time.

If you are having neuro symptoms, its really important to be completely gluten free in order to get relief. I have read that elsewhere that those with neuro symptoms are more sensitive than the average gluten intolerant person; given my own situation I believe it to be utterly true. This means toiletries, including shampoos, detergents, makeup, lip balm, wooden anything that might have had gluten in it, de-glutenizing your oven by using the self cleaning feature--and stick in your iron pots and pans in it at the same time, cleaners. Seriously. Always wash your hands before eating--and most especially after shaking someone's hand, etc. It can make a huge difference.

But yes I agree, all this is frustrating and tiring. We have a condition that in a perfect world should not exist, however here it is we do have to deal with it anyway. At least its do-able unlike overcoming a bad case of cancer or some other horrific condition. It forces you to eat right. Do avoid sugary things if you suspect MS by the way.

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Hi Mandy,

I have a variety of neuro, CNS, and some psych symptoms that I dealt/deal with in addition to the GI issues. There are several things I've found: I had to cut soy completely, and casein almost totally. I can handle really aged 'pasteurized' cow cheese ok (seems bland though), raw cows milk and milk products ok, goat and sheep cheese fine. But no other cow dairy. I also had to cut out almost all grains entirely.

Some of the grain issue is due to CC on the grains themselves - millet and sorghum have some of the highest levels of CC. Way over 20 ppm. FDA assumes in their labeling that unique grains are inherently gluten-free. So unless the end product is tested by the company, or the company tests their flours, or you buy and rinse and grind your own grains, there is a chance of CC from other grains. I think this is why some people can't eat a lot of 'gluten-free' brands, even though they are all gluten-free ingredients, and even produced in a gluten-free facility. Unless the end product is tested and certified gluten-free, there is always a question.

Another CC issue I had to deal with was in supplements and OTC meds. Starch is a binding agent, and many meds and supplements don't identify the source of the starch.

Our house is roughly 95% whole foods at meals now, and probably 80% raw foods (excluding meat of course which I usually cook - unless it's sushi). This has almost eliminated all of my symptoms. We buy from farmer's markets, community farms (CSA), and buy most of our meat locally from a local butcher and a co-worker who raises grass-fed cattle on the side. We buy a half a beef every year. And our half-share at a local community farm works out to one months worth of grocery budget gets us 26 weeks of fresh non-GMO/non-chemically treated produce.

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Thank you everyone for your advice. I"m going to look into removing soy from my diet also. Thanks again

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Hi Mandy, nightshade vegetables will also cause joint pain. Nightshades are potatoes, tomatoes, all bell peppers and eggplant.

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Darn I love potatoes!

NIghtshades in themselves aren't necessarily bad for everybody. I similarly cannot handle eating tomatoes and peppers for instance--but the cause is different. I am sensitive to salicylic acid (SA)--and tomatoes and peppers and many potatoes are very high in SA. However I can eat peeled white potatoes, since they are low in SA. Go figure!! Some have problems with tomatoes and potatoes due to the sugar content--since they may have candida overgrowth, or dysbiosis (a bacterial overgrowth problem in the gut). Many other people don't have a problem at all with nightshades, whereas some really do simply because of the underlying nightshade remnant toxicity they are susceptible to. Its wise to experiment by going off the nightshades (and other possible offending foods) and then see how you feel. Then reintroduce the suspect foods, one at a time, taking note how you do or don't react.

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Thank you! You have been very helpful!

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Darn I love potatoes!

You could try switching to sweet potatoes. They are not technically nightshades and are really good for you. I love to make baked sweet potatoes and top with savory topping just like I would a plain white potato. Sweet potato fries are good too!

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I second the sweet potatoes!! :) They are loaded with vitamin A (and antioxidants which we celiacs absolutely need!) and are good carbs for sugar metabolism. (I never knew any of this before my diagnosis and sometimes when I write this stuff, I am amazed at what I have learned.) :lol: Just bake them in their jackets in the oven---pierce with a few holes and put them in a shallow pan, though because the juice leaks. Bake them just like a baked potato--only these babies are SWEET and delicious...they don't need a thing, but you could add a dash of whatever you like--maple syrup, cinnamon, or some savory spice. A drizzle of olive oil will provide the good fat your body needs as well.

As for joint pain, I hear ya! :( I suffer with it BIG time. No supplement has ever helped (I tried them ALL--spent thousands of $$$) No exclusion of various foods or SA or nightshades (or acupuncture, chiro, PT, yoga or standing on my head :lol:) has made a bit of difference either. I have done elimination diets, etc...for many months. Not RA, not lupus...just painful joints and bones. UGH.

You however, should try whatever these good people suggest because you never know what one thing will do the trick for you!

I hope that in time, as I heal ,some of the inflammation will subside and I won't feel like I'm the stiff tin man from the Wizard of Oz. I start every morning joking to my hubby, OIL CAN! OIL CAN!! :blink:

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Good information here

I was active on c.com for years

gluten-free for 5 1/2 years

moved to CA and new GI says no celiac but MC and gluten intolerance

so I've added some gluten back for about 4 months and joints and muscles are acting up

have fibro too and know i was telling peole back in 05 that gluten-free diet helped me

now on savella for fibro and trying to get my restorative sleep back as cpap out here isn't working and needed new machine which i finally got.

wish i could take something for pain for Excedrin has been ruled out for me do to now healed stomach ulcer

so

guess i just have to try to keep active and use a cane. RA wants me to see a neurologist but it's a 1 1/2 month wait to get in. Gave up the night shades and went low oxalate's and cutting out gluten and those seemed to help.

Guess typing it all out i see what i have to do
:ph34r::blink:

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Good information here

I was active on c.com for years

gluten-free for 5 1/2 years

moved to CA and new GI says no celiac but MC and gluten intollerance

so i've added some gluten back for about 4 months and joints and muscles are acting up

have fibro too and know i was telling peole back in 05 that gluten-free diet helped me

now on savella for fibro and trying to get my restoravtive sleep back as cpap out here isn't working and needed new machine which i finally got.

wish i could take something for pain for Excedrin has been ruled out for me do to now healed stomach ulcer

so

guess i just have to try to keep active and use a cane. RA want's me to see a neurologist but it's a 1 1/2 month wait to get in. Gave up the night shades and went low oxalates and cutting out gluten and those seemed to help.

Guess typing it all out i see what i have to do
:ph34r::blink:

Hi JudyinPhillynow Calif :lol:

I am a bit confused...you've been gluten-free for over 5 years, yet your new GI says it is NOT celiac? How did he test you accurately -- if you are gluten-free?? :unsure:

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Hi JudyinPhillynow Calif :lol:

I am a bit confused...you've been gluten-free for over 5 years, yet your new GI says it is NOT celiac? How did he test you accurately -- if you are gluten-free?? :unsure:

oye, wrote 2 very long posts and lost both of them trying to get spell ck to work

just can't type it all over

bottom line.

did celiac panel in 1995 while eating gluten. was low positive and enterol labs said low also 3 GIs questioned if i had it

. but did gluten-free for 5 1/2 years and did feel better

moved to ca and lost 40 # and was so sick new Gi did all the tests and came up with MC and on asacol for that and gulten intolereance. had stomach ulcer and meds for that gave me c-diff thus the 40 # loss. I know i'm not making much sence here and can't for the 5th time get the spell ck to load so think i answered your questions as can't see them now.

adding------ I'm now 75% gluten free and i know the old script.......like a little bit pregnant but trying to sort out what is causing the joint paint and stopped smoking 4 1/2 months ago and seems so many issues came up after that

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oye, wrote 2 very long posts and lost both of them trying to get spell ck to work

just can't type it all over

bottom line.

did celiac panel in 1995 while eating gluten. was low positive and enterol labs said low also 3 GIs questioned if i had it

. but did gluten-free for 5 1/2 years and did feel better

moved to ca and lost 40 # and was so sick new Gi did all the tests and came up with MC and on asacol for that and gulten intolereance. had stomach ulcer and meds for that gave me c-diff thus the 40 # loss. I know i'm not making much sence here and can't for the 5th time get the spell ck to load so think i answered your questions as can't see them now.

adding------ I'm now 75% gluten free and i know the old script.......like a little bit pregnant but trying to sort out what is causing the joint paint and stopped smoking 4 1/2 months ago and seems so many issues came up after that

Congrats on quitting smoking. :) Good for you!

I guess you don't need the gentle reminder to quit ALL gluten first before you start making yourself crazy looking at other foods? Okay, then, I won't nag you!! :lol: Hope you feel better soon!

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Congrats on quitting smoking. :) Good for you!

I guess you don't need the gentle reminder to quit ALL gluten first before you start making yourself crazy looking at other foods? Okay, then, I won't nag you!! :lol: Hope you feel better soon!

Not looking at other foods. Just cutting the gluten to see if it helps the total body pain and esp joints and depression and brain fog. thanks for taking the time to write.

appreciate it

Judy

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Not looking at other foods. Just cutting the gluten to see if it helps the total body pain and esp joints and depression and brain fog. thanks for taking the time to write.

appreciate it

Judy

Hi Judy. For years I used to think I was just allergic to the wheat family. I discovered however when I went off all trace gluten (and I mean ALL--including shampoos, detergent, floor cleaners etc.) my joint pain went away, unless I actually was out of joint--plus it greatly improved my overall health and ability to stay well and not get every stray cold, flu etc. And got rid of anxiety, brain fog, migraines and depression--unless I get glutened from CC.

Since then I recently found that going off high to medium level salicylic acid foods has helped tremendously with reducing nerve pain (often difficult to distinguish which is what, eh?), pain/swelling in my lymphatic system, clumsiness, forgetfulness and some headaches.

Meanwhile congratulations on quitting smoking. That is a huge step!

Bea

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