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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Joint And Muscle Pain: How Long Till They Go Away?
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18 posts in this topic

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?

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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

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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.

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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.

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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!

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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.

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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?

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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!

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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.

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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.

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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?

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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.

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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.

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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.

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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.

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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!

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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.

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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!

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