Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Joint And Muscle Pain: How Long Till They Go Away?


Joe0123

Recommended Posts

Joe0123 Contributor

I've been gluten free since late June 2009 but still having joint and muscle pain. Its not as bad as it was (it was nearly unbearable) but its still there. To those of you who had joint and muscle pain, how long did it take before it went away? Are the pains just because my body is weak now and I need to slowly start exercising again?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



beth67 Rookie

I've been gluten free since september 09. I had bad muscle and joint pain and still do but not as bad as before. I was basically house bound. A couple of weeks ago I had food allergy testing done to check for 92 food sensitivites and it turns out I'm allergic to several things. Hopefully getting off these foods will help with the remaining pain and tiredness and insomnia. Have you had allergy testing done to see if you have other sensitivites?

Beth

verushka1974 Newbie

I have the same issue....I started the gluten-free diet back in June 08 and my body pains actually got worse for many months while on the diet. I was still somehow getting some gluten I believe from the seasonings I was using (dried oregano, garlic powder, and a few other ones)...plus the fact that I was still eating a lot of gluten-free food and not going completely on an ALL natural gluten-free diet. Then started eating all natural and noticed a big difference. The last 6 months have been much better. Lot less body pain but still notice that once I eat a gluten-free product I get the pain again...maybe my body is too sensitive.

ravenwoodglass Mentor

It took about 6 months or so for me but I still had bad days until I eliminated soy also. For me that was the final key to complete resolution. I think it takes a while for the antibodies and the inflammatory reaction to resolve. I also had to become super strict, including dropping anything with distilled gluten grains and I also have to avoid 'natural' vitamin E because it is derived from either wheat or soy most of the time.

bluebonnet Explorer

how are distilled gluten grains different and where are they found in?

i have so much joint and bone pain ... i'm really looking forward to healing there but i'm not even a month gluten free so it sounds like it will be several months before its noticable. hope you feel better soon!

ravenwoodglass Mentor

how are distilled gluten grains different and where are they found in?

i have so much joint and bone pain ... i'm really looking forward to healing there but i'm not even a month gluten free so it sounds like it will be several months before its noticable. hope you feel better soon!

Distilled gluten grains would be in alcohol and distilled vinegar. The vinegar would be used in stuff like ketsup, barbeque sauce, pickles etc. If you live near a Wegmans they will not put a circle G on an item if the vinegar is made from a gluten grain. Heinz distilled white vinegar is made from corn so if you like to make stuff with that type of vinegar that is a safe one to use. Most celiacs tolerate them but not all, I think the best way to tell if they are safe for you is to drop them for a while and then if needed challenge as would would any food by consuming 3 times a day for a week and watching for a reaction.

AshleyJo Newbie

ive never been diagnosed with Celiac but i cant eat gluten because its not good for autoimmune diseases and i have one that messes with my thyroid. so, ive been gluten free for 8 months. i realized that after being off of it, it was making me sick without me knowing it.

if i accidentally eat it, my whole body hurts like a car ran me over. mostly my muscles ache and i feel depressed.

does this mean i have Celiac disease?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



bluebonnet Explorer

ive never been diagnosed with Celiac but i cant eat gluten because its not good for autoimmune diseases and i have one that messes with my thyroid. so, ive been gluten free for 8 months. i realized that after being off of it, it was making me sick without me knowing it.

if i accidentally eat it, my whole body hurts like a car ran me over. mostly my muscles ache and i feel depressed.

does this mean i have Celiac disease?

it sure sounds like you are gluten intolerant!

GFinDC Veteran

ive never been diagnosed with Celiac but i cant eat gluten because its not good for autoimmune diseases and i have one that messes with my thyroid. so, ive been gluten free for 8 months. i realized that after being off of it, it was making me sick without me knowing it.

if i accidentally eat it, my whole body hurts like a car ran me over. mostly my muscles ache and i feel depressed.

does this mean i have Celiac disease?

Is your thyroid autoimmune disease Hashimoto's Thyroiditis? If it is Hashimoto's then it is probably related to celiac disease. Hashimoto's thyroiditis is a related condition or associated condition with celiac. You can do search on "celiac related condition" and find lists of other autoimmune diseases that celiacs tend to get.

I had joint paint that was relived when I started taking thyroid supplements. Recently I got rid of the last of the soy in my diet and my joints are much better. I even stopped the thyroid supplements a couple weeks ago.

RiceGuy Collaborator

I've been gluten free since late June 2009 but still having joint and muscle pain. Its not as bad as it was (it was nearly unbearable) but its still there. To those of you who had joint and muscle pain, how long did it take before it went away? Are the pains just because my body is weak now and I need to slowly start exercising again?

I only got worse until I started taking some nutritional supplements. Vitamin B12 (methyl sublingual tablet form), and magnesium are the two which helped more than I have words for. Celiac Disease is known to cause deficiencies in these and other nutrients. You might also benefit from a co-enzyme B-complex, vitamin D3, and perhaps a multivitamin/mineral formula. The other thing I needed to do was to avoid nightshades (see below).

I have the same issue....I started the gluten-free diet back in June 08 and my body pains actually got worse for many months while on the diet. I was still somehow getting some gluten I believe from the seasonings I was using (dried oregano, garlic powder, and a few other ones)...plus the fact that I was still eating a lot of gluten-free food and not going completely on an ALL natural gluten-free diet. Then started eating all natural and noticed a big difference. The last 6 months have been much better. Lot less body pain but still notice that once I eat a gluten-free product I get the pain again...maybe my body is too sensitive.

If those gluten-free prepackaged products have potato, that might explain it. For me, nightshades would bring on tremendous pains. Just one serving of potatoes, and I couldn't even walk for about two weeks. The alkaloids which nightshade foods contain are nerve toxins. It's just that most people aren't sensitive enough to it to notice. However, Celiac causes leaky gut, and it is for this reason that I believe the toxins are able to get into the bloodstream in higher amounts. But whatever the reason, I know better than to eat a nightshade.

Joe0123 Contributor

Should I go see an endocrinologist and get my thyroid tested? I don't think any of the doctors I've seen have ever tested that. Would it be worthwhile?

AshleyJo Newbie

Is your thyroid autoimmune disease Hashimoto's Thyroiditis? If it is Hashimoto's then it is probably related to celiac disease. Hashimoto's thyroiditis is a related condition or associated condition with celiac. You can do search on "celiac related condition" and find lists of other autoimmune diseases that celiacs tend to get.

I had joint paint that was relived when I started taking thyroid supplements. Recently I got rid of the last of the soy in my diet and my joints are much better. I even stopped the thyroid supplements a couple weeks ago.

yes i have hashimoto.

Reba32 Rookie

there are 2 auto-immume thyroid diseases, both can be linked to Celiac disease. Hashimoto's (hypothyroid) and Grave's disease (hyperthyroid).

There is a large co-relation to Celiac disease and ANY other auto-immune disease.

I have had Grave's disease. It is currently in remission.

GFinDC Veteran

yes i have hashimoto.

Hi AshleyJo,

It might help your Hashimoto's to stay gluten free then. I am pretty sure I read on here where other people with Hashimoto's had some symptom relief after going gluten-free. Others said they didn't have any relief but they had been celiac for a long time and untreated (not on the diet). People have also reported their other autoimmune conditions symptoms flared after being glutened. That link is especially clear in people with dermatitis herpetiformis. But people with joint pain have reported flares also.

Personally I think doctors with Hashimoto's patients or other autoimmune disease patients should always test them for celiac disease. Seems kind of obvious but I don't think it happens often. Anyway, welcome to the forum! You can find lots of testing tips in the pre-diagnosis forum. There are also articles on testing on the main page of celiac . com. There are several people on the board with Hashimoto's that might be able to help also. I don't have Hashimoto's myself but I do have a cyst and a couple of thyroid nodules.

Since you have Hashimoto's Thyroiditis it seems that raises the chances you have celiac disease also. The blood testing for gliaden antibodies may not work for you since you have been off gluten for a while. If you are really determined to get a doctors diagnosis you would need to go on a gluten eating binge for 6 weeks or so. That way the antibodies have a chance to build up to testable levels. I don't think it is a good idea though since yuo already have Hashimoto's. It could do more damage to your thyroid.

Another good test is your own bodies reaction. If you have increased symptoms after eating gluten then you probably either have celiac or gluten intolerance. Either way you would need to stay gluten free to be healthy.

AshleyJo Newbie

I am totally gluten free for the last 8 months. a lot of my symptoms have cleared but i still have a lot of bizarre things happen and im pretty sure its from my thyroid stuff. my doc is the first one who told me to stay away from gluten no matter if im intolerant or not. it seems to not benefit anyone. and i would NEVER EVER EVER EVER binge eat gluten after seeing how sick it makes me. so i dont really care if i have celiac of not....im done with gluten. i obviously can see that there is a huge problem with me and gluten. we dont mix. i just cant believe that my solid 3 years of massive aches and pains were from food. i had no idea! i was eating gluten containing foods pretty much every meal, every day! so, a ton of health benefits have come to me now that i have learned how extremely important food is to my body. so, im very thankful!

FYI- one main thing i do daily is blend smoothies using whole foods and mixing different extracts that help endocrine system health... tell anyone u know with hashimoto or any low hormone producing thyroid problem about Maca root powder. its unbelieveable! thank you for your time and info! i consider it a blessing to get to learn from everyone who is also dealing with this stuff.... thank u again!

Hi AshleyJo,

It might help your Hashimoto's to stay gluten free then. I am pretty sure I read on here where other people with Hashimoto's had some symptom relief after going gluten-free. Others said they didn't have any relief but they had been celiac for a long time and untreated (not on the diet). People have also reported their other autoimmune conditions symptoms flared after being glutened. That link is especially clear in people with dermatitis herpetiformis. But people with joint pain have reported flares also.

Personally I think doctors with Hashimoto's patients or other autoimmune disease patients should always test them for celiac disease. Seems kind of obvious but I don't think it happens often. Anyway, welcome to the forum! You can find lots of testing tips in the pre-diagnosis forum. There are also articles on testing on the main page of celiac . com. There are several people on the board with Hashimoto's that might be able to help also. I don't have Hashimoto's myself but I do have a cyst and a couple of thyroid nodules.

Since you have Hashimoto's Thyroiditis it seems that raises the chances you have celiac disease also. The blood testing for gliaden antibodies may not work for you since you have been off gluten for a while. If you are really determined to get a doctors diagnosis you would need to go on a gluten eating binge for 6 weeks or so. That way the antibodies have a chance to build up to testable levels. I don't think it is a good idea though since yuo already have Hashimoto's. It could do more damage to your thyroid.

Another good test is your own bodies reaction. If you have increased symptoms after eating gluten then you probably either have celiac or gluten intolerance. Either way you would need to stay gluten free to be healthy.

AshleyJo Newbie

well ive been knowingly gluten free for 8 months but i have gotten into some trouble by eating things with it in there and not knowing!

I am totally gluten free for the last 8 months. a lot of my symptoms have cleared but i still have a lot of bizarre things happen and im pretty sure its from my thyroid stuff. my doc is the first one who told me to stay away from gluten no matter if im intolerant or not. it seems to not benefit anyone. and i would NEVER EVER EVER EVER binge eat gluten after seeing how sick it makes me. so i dont really care if i have celiac of not....im done with gluten. i obviously can see that there is a huge problem with me and gluten. we dont mix. i just cant believe that my solid 3 years of massive aches and pains were from food. i had no idea! i was eating gluten containing foods pretty much every meal, every day! so, a ton of health benefits have come to me now that i have learned how extremely important food is to my body. so, im very thankful!

FYI- one main thing i do daily is blend smoothies using whole foods and mixing different extracts that help endocrine system health... tell anyone u know with hashimoto or any low hormone producing thyroid problem about Maca root powder. its unbelieveable! thank you for your time and info! i consider it a blessing to get to learn from everyone who is also dealing with this stuff.... thank u again!

Joe0123 Contributor

I just saw that my rheumatologist awhile back did a Q-TSH 3rd generation test and my results were 1.96. So does that rule out thyroid problems for me? Again, I would like some input.

AshleyJo Newbie

I just saw that my rheumatologist awhile back did a Q-TSH 3rd generation test and my results were 1.96. So does that rule out thyroid problems for me? Again, I would like some input.

not at all! thyroid blood test results are not the only means of telling if it is slow or too much thyroid hormones. there is a book my dr wrote called "the thyroid solution". check it out. it has helpful information! my dr makes his diagnoses on blood results and your symptoms because we know what symptoms are classic signs of struggles with the thyroid. but if a dr rules out thyroid based only on a blood test, he may not help you. not to mention, its much better to find an endocrinologist who does his own blood work. the different labs have different readings. depending on which one you go to, they may say that its abnormal at a different number than others.... its very complicated and you need a thyroid specialist if you think your thyroid is abnormal.

i knew before i walked in there! it is in my family history and i had all the classic signs. BUT, my blood work only said that i was low a very tiny bit, so many drs would not treat me. no matter what the drs said, i knew i was very sick everyday!!!! so, now that my new dr has me on a tiny bit of hormones, it has improved my health tremendously! BUT i dont want to spend my whole life on medication. i have a thyroid so it should work properly. i have changed my diet and i dont eat gluten. i will try everything i can to eventually be normal on my own.... i believe in that.

best of wishes to you Joe! hope this helps!

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Wheatwacked replied to Heatherisle's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      34

      Blood results

    2. - Known1 replied to xxnonamexx's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

    3. - Wheatwacked replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      31

      results from 13 day gluten challenge - does this mean I can't have celiac?

    4. - Wheatwacked replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      31

      results from 13 day gluten challenge - does this mean I can't have celiac?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,411
    • Most Online (within 30 mins)
      7,748

    EBeloved
    Newest Member
    EBeloved
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Wheatwacked
    • Wheatwacked
      Celiac Disease causes more vitamin D deficiency than the general population because of limited UV sunlight in the winter and the little available from food is not absorbed well in the damaged small intestine.  Taking 10,000 IU a day (250 mcg) a day broke my depression. Taking it for eleven years.  Doctor recently said to not stop.  My 25(OH)D is around 200 nmol/L (80 ng/ml) but it took about six years to get there.  Increasing vitamin D also increases absorption of Calcium. A good start is 100-gram (3.5-ounce) serving of salmon,  vitamin D from 7.5 to 25 mcg (300 to 1,000 IU) but it is going to take additional vitamin D supplement to be effective.  More importantly salmon has an omega-6 to omega-3 ratio 1:10 anti-inflammatory compared to the 15:1 infammatory ratio of the typical Western diet. Vitamin D and Depression: Where is all the Sunshine?
    • Known1
      Thank you for sharing your thoughts.  I respectfully disagree.  You cherry picked a small section from the page.  I will do the same below: The agency is seeking information on adverse reactions due to “ingredients of interest” (i.e., non-wheat gluten containing grains (GCGs) which are rye and barley, and oats due to cross-contact with GCGs) and on labeling issues or concerns with identifying these “ingredients of interest” on packaged food products in the U.S. “People with celiac disease or gluten sensitives have had to tiptoe around food, and are often forced to guess about their food options,” said FDA Commissioner Marty Makary, M.D., M.P.H. “We encourage all stakeholders to share their experiences and data to help us develop policies that will better protect Americans and support healthy food choices.” --- end quote Anyone with celiac disease is clearly a stakeholder.  The FDA is encouraging us to share our experiences along with any data to help develop future "policies that will better protect Americans and support healthy food choices".  I see this as our chance to speak up or forever hold our peace.  Like those that do not participate in elections, they are not allowed to complain.  The way I see it, if we do not participate in this request for public comment/feedback, then we should also not complain when we get ill from something labeled gluten-free. Have a blessed day ahead, Known1
    • Wheatwacked
      Here is a link to the spreadsheet I kept to track my nutrition intakes.  Maybe it will give you ideas. It is not https so browsers may flag a security warning. There is nothing to send or receive. http://doodlesnotes.net/index3.html I tracked everything I ate, used the National Nutrition Database https://www.foodrisk.org/resources/display/41 to add up my daily intake and supplemented appropriately.  It tracks about 30 nutrients at once.
    • Wheatwacked
      Hello @catnapt, That's so true.  Every person with Celiac Disease has different symptoms.  There are over 200 that it mimics.  Too many still believe that it is only a childhood disease you outgrow.  Or it's psychosomatic or simply a fad.  Idiots.  It's easy to get angry at all of them.   You just have to pick at the answers until you find the ones that work for you.  I too suffer from not being able to take the drugs that work for "everyone else".  SSRIs make me twitch ane feel like toothpicks are holding my eye open, ARBs cripple me.  Statins cause me intestinal Psuedo Obstruction.  Espresso puts me to sleep.  I counted 19 different symptoms that improved from GFD and dealing with my nutritional defecits.  I couldn't breath through my mouth until I started GFD at 64 years old.   My son was born with celiac disease, biopsy diagnosed at weaning.   So why are we the one-percenters.  Why, after being silent for so long, does it suddenly flare? There is the possibility that you have both Celiac Disease and Non Celiac Gluten Sensitivity.  NCGS was not established as a diagnosis until 1980.  NCGS is diagnost by first elimating Celiac Disease as the cause, and showing improvement on GFD.  Nothing says you can't have symptoms from both.  Wheatbelly: Total Nutrition by Dr. Davis was helpful to me. We come to the forum to share what we've learned in dealing with our own symptoms.  Maybe this will help someone. Speaking of which if you don't mind; what is your 25(OH)D vitamin D blood level?  You mentioned a mysterious Calcium issue. Vitamin D, Calcium and Iodine are closely interactive. It is not uncommon for postmenopausal women to have insufficient intake of Iodine.   (RDA): Average daily level of intake sufficient to meet the nutrient requirements of nearly all (97%–98%) healthy individuals; often used to plan nutritionally adequate diets for individuals You are a one-percenter.  You may need higher intake of some essential nutrient supplements to speed up repairing the damages.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.