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Muscle Pain


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#1 Bigbread

 
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Posted 27 February 2011 - 01:08 PM

Do you guys get a lot of muscle pain when you eat wheat?

I'm not specifically only talking about joint pain, more all over muscle pain or in a certain part of you body?

Thanks
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#2 aeraen

 
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Posted 27 February 2011 - 01:24 PM

That was the surprise benefit of going gluten-free for me.

I was begining to walk like an old lady, and I was only 50. I thought it was the result of being old, fat and out of shape.

About a month of going gluten-free, it suddenly occured to me that I was walking normally, not walking like Frankenstein's monster the first 20 steps after getting out of the car, and getting up off the sofa w/o groaning. I had no idea that celiac caused these symptoms.
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#3 rosetapper23

 
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Posted 27 February 2011 - 01:26 PM

Yes, when I'm accidentally glutened, I get horrible bone, joint, and muscle pain. The medical community is finally beginning to understand that muscle pain can be a symptom of celiac (also tendon and ligament problems). I also suffer from muscle weakness after eating gluten.
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#4 IrishHeart

 
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Posted 27 February 2011 - 04:18 PM

Oh yes! Muscle pain, joint pain, bone pain, lost muscle mass and tendon and ligaments sore, too---I have it all. :unsure: (MRIs and blood tests say I am "normal", no RA, etc. "just" osteoarthritis <_< )

A PT told me I can't even get relief until the gut clears from the gluten inflammation. (at least NOW I know why I am in so much pain after years of seeing several specialists, PTs, Chiros,Massage therapists, acupuncturists..THOUSANDS of $$$$ for no relief whatsoever)

I have been in constant agony for several years and I cannot take anything for it. Rips my stomach!!

Boy, I look forward to seeing some of it resolve. So many on here tell me they have improved greatly. Hope yours does too! Fingers crossed!! :)
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#5 nmthommy

 
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Posted 27 February 2011 - 05:06 PM

I sometimes feel like I've been hit by a truck. I have to get a massage before getting an adjustment at the chiropractor.

I was also walking like an old lady and having to watch the ground so I wouldn't trip. I just thought it was due to my fast weight gain and that I didn't know where my "new" body center of gravity was.
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#6 rosetapper23

 
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Posted 27 February 2011 - 05:10 PM

IrishHeart,

Have you looked into taking Curamin? It's a natural pain reliever that has helped a lot of people. Their Website is www.curamin.com .

I also take Dr. Christopher's Joint Formula and his Tissue and Bone Formula for the joint and bone pain. I can really tell the difference when I run out.

For the muscle pain, I follow Brian Peskin's protocol of taking 1/2 teaspoon of organic flaxseed oil and 3/4 teaspoon of either grapeseed oil or safflower oil--simply mix the oils into juice or a smoothie. This combination gives you the correct ratio of parent essential oils to fully oxygenate all your cells. It really helps my muscles, particularly after I've exercised.

Just some natural ideas that seem to help...
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#7 Luddie

 
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Posted 27 February 2011 - 08:18 PM

I started having lots of aches and pains last summer even though I was on gluten free everything! I have struggled through until now and have been on an elimination diet through doc/nutritionist for the past 3 weeks to see if we can figure out what's happening. My pains are lessening considerably, so I'm hoping tomorrow's blood test will show some really good news. I, too, have had acupuncture and physical therapy and they have helped keep me sane. There were mornings I couldn't even get myself dressed.
I do have another question, though. I never had intestinal symptoms before I was diagnosed, but since I've been on the gluten-free diet and taking supplements (including magnesium) I do have intestinal symptoms, not really the big D, but very close to it.
And lots of stomach gurgling. I'm wondering if I can tell when/if I get "glutened" by my hurting or by my bowels....or both. Anybody else have that situation?
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#8 yolo

 
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Posted 27 February 2011 - 11:57 PM

I have found that when I get cross contaminated with gluten it often messes up my intestines as well as my joints not to speak of migraines. I also tend to get easily upset or anxious at first, and later depressed with no or little energy.

It is at these times I have to be much more careful about my health because I am in fact run down, unable to fully make use of the vitamins, minerals and oils from the foods I eat. I have noticed too that during these times even my hair suffers --it gets dull and limp plus my fingernails get weaker--not to mention back and hip aches and tender elbows plus jerking nerves at night.

Finally if I have been CC'd a lot (as I was recently helping take care of my mother) I also have to be very careful to not get either a bladder or kidney infection from systemic inflammation, as well as lung congestion. Needless to say, I stopped doing personal care for my gluten eating mother...
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Diagnosed celiac sprue as infant: failure to thrive & pneumonia-back on grains age 4. Began herbs 1971 combating chronic kidney disease/general ill health 1973. Avoid wheat family and "allergens" by 1980. Late 80's doc. diagnosed candida: cave-man diet. Diagnosed degraded myelin sheath 2006; need co-enzyme B vitamins. Discovered celiac fall 2007; finally told diagnosis as infant. Recently found I am salicylic acid intolerant. Ironically can't tolerate most herbs now. Can now eat brown rice & other gluten-free grains (except corn) & even maple syrup & now homeopathic medicine works! Am still exploring the shape of this elephant but I've made progress!

#9 ravenwoodglass

 
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Posted 28 February 2011 - 05:45 AM

I started having lots of aches and pains last summer even though I was on gluten free everything! I have struggled through until now and have been on an elimination diet through doc/nutritionist for the past 3 weeks to see if we can figure out what's happening. My pains are lessening considerably, so I'm hoping tomorrow's blood test will show some really good news. I, too, have had acupuncture and physical therapy and they have helped keep me sane. There were mornings I couldn't even get myself dressed.
I do have another question, though. I never had intestinal symptoms before I was diagnosed, but since I've been on the gluten-free diet and taking supplements (including magnesium) I do have intestinal symptoms, not really the big D, but very close to it.
And lots of stomach gurgling. I'm wondering if I can tell when/if I get "glutened" by my hurting or by my bowels....or both. Anybody else have that situation?


Have you tried eliminating soy? That was the last piece of the puzzle for me with joint and muscle pain.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#10 IrishHeart

 
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Posted 28 February 2011 - 06:37 AM

IrishHeart,

Have you looked into taking Curamin? It's a natural pain reliever that has helped a lot of people. Their Website is www.curamin.com .

I also take Dr. Christopher's Joint Formula and his Tissue and Bone Formula for the joint and bone pain. I can really tell the difference when I run out.

For the muscle pain, I follow Brian Peskin's protocol of taking 1/2 teaspoon of organic flaxseed oil and 3/4 teaspoon of either grapeseed oil or safflower oil--simply mix the oils into juice or a smoothie. This combination gives you the correct ratio of parent essential oils to fully oxygenate all your cells. It really helps my muscles, particularly after I've exercised.

Just some natural ideas that seem to help...



RoseT
Thanks for your thoughts.

I am all for the natural approach. I have investigated every protocol there is and I have finally come to the conclusion that I am just not someone who benefits from them.

Right now, I just take flaxseed oil and fish oil, along with a gluten-free/SF/DF multivitamin, D3, B-12, Cal/mag. That's all my stomach can handle.

Since 2006, I have tried them all, spent THOUSANDS of dollars on homeopathic remedies (I saw an ND for 2 years) AND an MD who also recommended things like L-glutamine, probiotics,glucosamine, vitamins, minerals, whey protein powders.....NOTHING helped. I am not kidding when I tell you that I have taken over 100 natural supplements and saw absolutely NO benefit. Can you imagine taking valerian root and still be wide awake? Seriphos? wide awake. These things knock people OUT!6 months of glucosamine? stiff joints...and on and on. I gave them all a long trial period...MY PT had me purchase Curcumin, willow bark, yadda yadda yaadda....I had to stopped trying things. My tummy BURNED and I had no relief. All that money wasted. sigh...

My guess is...my gut is just too messed up right now to benefit from them. No absorption.

I know many people benefit from supplementation. Maybe as I heal, things will work for me too.
It really stinks that I cannot use anything to stop the pain at all. But, I feel that my gut healing is the key. I avoid dairy and soy--the soy for a year now....so, we'll see what happens.
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#11 yolo

 
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Posted 28 February 2011 - 11:58 AM

I wonder how you are with aspirin?? I discovered recently my "allergy" or intolerance to aspirin was the tip of an iceburg called salicylic acid (SA) intolerance or sensitivity. It can cause a variety of symptoms including muscle and joint aches, ADD like anxiety as well as intestinal distress and eczema etc. Its not clinically an "allergy" even though the symptoms for it can be partly relieved by taking benedryl and/or baking soda.

SA is in the skin of many fruits and vegetables as well as most herbs and nuts--including coconut which is an ingredient in most soaps these days as well as the basis for the charcoal in most water filters. Just a thought...it might be worth investigating. Reason I mentioned it is that for some of these symptoms nothing really worked for me either--especially a lot of things that are healing for most people.

Bea
  • 0
Diagnosed celiac sprue as infant: failure to thrive & pneumonia-back on grains age 4. Began herbs 1971 combating chronic kidney disease/general ill health 1973. Avoid wheat family and "allergens" by 1980. Late 80's doc. diagnosed candida: cave-man diet. Diagnosed degraded myelin sheath 2006; need co-enzyme B vitamins. Discovered celiac fall 2007; finally told diagnosis as infant. Recently found I am salicylic acid intolerant. Ironically can't tolerate most herbs now. Can now eat brown rice & other gluten-free grains (except corn) & even maple syrup & now homeopathic medicine works! Am still exploring the shape of this elephant but I've made progress!

#12 IrishHeart

 
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Posted 28 February 2011 - 12:37 PM

I wonder how you are with aspirin?? I discovered recently my "allergy" or intolerance to aspirin was the tip of an iceburg called salicylic acid (SA) intolerance or sensitivity. It can cause a variety of symptoms including muscle and joint aches, ADD like anxiety as well as intestinal distress and eczema etc. Its not clinically an "allergy" even though the symptoms for it can be partly relieved by taking benedryl and/or baking soda.

SA is in the skin of many fruits and vegetables as well as most herbs and nuts--including coconut which is an ingredient in most soaps these days as well as the basis for the charcoal in most water filters. Just a thought...it might be worth investigating. Reason I mentioned it is that for some of these symptoms nothing really worked for me either--especially a lot of things that are healing for most people.

Bea


Hi Bea,
Thanks for the thoughts!
I do not take aspirin so I do not know how I react. I only tried the white willow bark a few weeks ago at the suggestion of my PT/ND. She said it worked as well as pain medication. um, nope, it didn't for me!

I looked up foods with salicylics at your suggestion.

Here's the thing. My mouth,throat BURN 24/7 and I eat a LOT of the veggies, fruits, dried fruits, nuts that are on the list for SA intolerance. UH-OH...

I LOVE coconut and when I tried to supplement with teaspoons of the oil? My throat felt like it was on fire....Now you've got me thinking! :unsure:

I'll start watching what happens when I eat those foods and let you know what I find. Thanks!
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#13 yolo

 
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Posted 01 March 2011 - 01:45 AM

Hi Bea,
Thanks for the thoughts!
I do not take aspirin so I do not know how I react. I only tried the white willow bark a few weeks ago at the suggestion of my PT/ND. She said it worked as well as pain medication. um, nope, it didn't for me!

I looked up foods with salicylics at your suggestion.

Here's the thing. My mouth,throat BURN 24/7 and I eat a LOT of the veggies, fruits, dried fruits, nuts that are on the list for SA intolerance. UH-OH...

I LOVE coconut and when I tried to supplement with teaspoons of the oil? My throat felt like it was on fire....Now you've got me thinking! :unsure:

I'll start watching what happens when I eat those foods and let you know what I find. Thanks!



Do let me know. It was only due to a suggestion from someone here on celiac.com that I finally figured this SA condition out. Ironically now I can tolerate some foods I used to avoid, and now avoid many I used to eat that I thought were "healthy". Go figure!

Filtered water too seems to bother me due to the coconut based charcoal filters. I have to either boil city water or buy spring water. Sheesh!

But the proof is in finally feeling so much better. I still often have to take benedryl however in order to sleep since I haven't entirely figured out all the things to avoid.

My most recent realization was that my beloved bok choy seems to be bothering me. Plus whereas some sources of powdered carob bothers me others do not. It is probably due to CC from the carob being processed on the same equipment as tree nuts...!!

Bea
  • 0
Diagnosed celiac sprue as infant: failure to thrive & pneumonia-back on grains age 4. Began herbs 1971 combating chronic kidney disease/general ill health 1973. Avoid wheat family and "allergens" by 1980. Late 80's doc. diagnosed candida: cave-man diet. Diagnosed degraded myelin sheath 2006; need co-enzyme B vitamins. Discovered celiac fall 2007; finally told diagnosis as infant. Recently found I am salicylic acid intolerant. Ironically can't tolerate most herbs now. Can now eat brown rice & other gluten-free grains (except corn) & even maple syrup & now homeopathic medicine works! Am still exploring the shape of this elephant but I've made progress!

#14 IrishHeart

 
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Posted 01 March 2011 - 06:10 AM

Do let me know. It was only due to a suggestion from someone here on celiac.com that I finally figured this SA condition out. Ironically now I can tolerate some foods I used to avoid, and now avoid many I used to eat that I thought were "healthy". Go figure!

Filtered water too seems to bother me due to the coconut based charcoal filters. I have to either boil city water or buy spring water. Sheesh!

But the proof is in finally feeling so much better. I still often have to take benedryl however in order to sleep since I haven't entirely figured out all the things to avoid.

My most recent realization was that my beloved bok choy seems to be bothering me. Plus whereas some sources of powdered carob bothers me others do not. It is probably due to CC from the carob being processed on the same equipment as tree nuts...!!

Bea


Thanks again!
I'll see what happens if I take these foods out.
How long before you noticed an improvement?
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#15 yolo

 
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Posted 01 March 2011 - 11:50 AM

Thanks again!
I'll see what happens if I take these foods out.
How long before you noticed an improvement?


I wish I could be more exact. However it didn't take very long for me to notice some important improvements being off salicylic acid for the most part--I think maybe less than a week when I noticed my tongue color improved and my abdomen wasn't so distended. The fact I could finally tolerate eating brown rice, bananas and ripe peeled pears and peeled cooked golden delicious apples (in moderation) was huge. Previously I thought all grains and fruit gave me this intractable candida.

Now on the SA intolerance diet my tongue color improved and inflammation went away--which also lessened and often removed the pain in my joints unless I ate something I shouldn't have. Nevertheless, some of the symptoms like eczema and the nerve problems have taken longer--although they too improved. I have days without it and days with it depending on my diet. It has also taken its time probably due to SA being built up in my system. They say it takes roughly 6 weeks to flush it all out. It has taken me a little longer than that probably because learning what does and does not have too much SA in it has been a little complicated. I am still learning--but as said much improved.

One good thing now is that I can tell pretty much right away (or at least overnight) if something is not right for me. Thankfully the benedryl comes to the rescue if I can't sleep and/or have eczema symptoms (actually this usually goes together for me). Baking soda also helps.

I like the previous poster's suggestion of keeping a food and symptoms journal. It really is a good idea with this condition since so many things have SA in them.

For me I still need to have foods that either have negligeable amount of SA or the Low rating. Moderate at this point is still too much for me. I also thought using some spices that are high in SA would be OK since I didn't use that much say in a stew, for instance, but it was still too much for me. Fortunately my taste buds are adapting and I am finding just using parsely, garlic, leeks and onions are sufficient for spices.

I also still can't tolerate asparagus or, it seems, bok choy and have to be careful of SA CC (though one does not have to be as careful of SA CC as one does with gluten CC).

Again good luck!
  • 0
Diagnosed celiac sprue as infant: failure to thrive & pneumonia-back on grains age 4. Began herbs 1971 combating chronic kidney disease/general ill health 1973. Avoid wheat family and "allergens" by 1980. Late 80's doc. diagnosed candida: cave-man diet. Diagnosed degraded myelin sheath 2006; need co-enzyme B vitamins. Discovered celiac fall 2007; finally told diagnosis as infant. Recently found I am salicylic acid intolerant. Ironically can't tolerate most herbs now. Can now eat brown rice & other gluten-free grains (except corn) & even maple syrup & now homeopathic medicine works! Am still exploring the shape of this elephant but I've made progress!




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