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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.

Aching Bones
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28 posts in this topic

I was curious if aching bones & pain in general are part of having Celiac. My husband seems to ache & hurt all over. I would like to do what I can to help him feel better but am unsure what to do. Has anyone else experienced this & if so what can be done. It seems to be an ongoing problem for him.

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I had aching bones and pain the whole time I was sick....even my teeth hurt. I never really had the "typical" stomach type pains or diarreah but the rest of my body ached constantly. Its going away quickly since I've been gluten-free...it only comes back when I'm reacting to something I've eaten. I was only sick 3 years (seemed like a lifetime) and I realize I was lucky since the average time for diagnosis is something like 11 years. I don't know how long your husband was sick but it could take some time to heal.

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I am the queen of aches and pains..... It is just something that I live with, some days are worse than others..... :( I am 42, and have had many, many years of damage though, so that could be a factor......

Karen

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I was curious if aching bones & pain in general are part of having Celiac.  My husband seems to ache & hurt all over.  I would like to do what I can to help him feel better but am unsure what to do.  Has anyone else experienced this & if so what can be done.  It seems to be an ongoing problem for him.

<{POST_SNAPBACK}>

Here are a few possible causes:

1. He could have low testosterone, common with malabsorption (which can lead to thinning bones)

2. He could have a bone disorder from malnutrition (osteomalacia causes constant bone pain)

3. He could have thyroid disease, which is associated with celiac disease (hypo can have a fibromyalgia effect, and hyper can cause bone and joint pain)

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I ache all the time too... some days are worse than others... I was 34 before getting dx, so 34 years of damage... previously dx with fibromyalgia as well.

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When my son was three yrs old and not yet dxed, he would grab his legs and cry and moan about the pain in his knees, elbows etc. After a few months gluten free, he's never had that again.

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The "aches and pains." Those were my absolute worst symptoms, and for me, tell-tale signs that I've been glutened. As bad as my weight loss, ibs/bathroom problems, fatigue, etc, all minored in comparison to the severe bone and muscle pain I had. I hurt to the touch, my skin hurt! When I went on the gluten free diet (luckily, I think I had only been sick for about 10-11 months as compared to the many, many years some people were undiagnosed), the pain has completely disappeared, unless I am glutened. I never found anything that worked except waiting the gluten to get out of my system. I took lots of really hot baths and that was the only -very temporary- relief that I had. It took me a few months after I stopped eating gluten to have the pain stop.

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I have MANY aches and pains, and its mostly in my legs. But its because my hips are turned in so it causes pressure. It has nothing to do with Celiac. Does your husband walk with his feet in or out? Any bones look weird? That could be the cause.

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I too have had the aches and pains. Before I was diagnosed I just thought that these aches and pains, as well as many other symptoms, were just part of the aging process. Now that I've been gluten-free for almost 2 months I can see that most if not all were probably celiac related. I still have achy days, however, they are getting fewer and farther apart.

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I have severe bone and joint pain. I have been tested for lupus and arthritis, but the results were negative. I was diagnosed with Fibromyalgia approximately 15 years ago and again this year. I have improved since being on the gluten-free diet, but I still have to take pain relievers to function. I was taking hydrocodone, but I was becoming concerned, since it is so addictive, so now I take Ultram and tylenol. Your husband needs to talk to his doctor and have tests to be sure that nothing else is going on. I hope that he feels better soon!

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My aches and pains were so constant I thought it was just part of being human.

I asked my bf a couple months ago ( b4 diagnosis) if he hurt all the time. He said no.

I started to ask more people and realized it wasn't normal at all. Everything felt bruised all the time. Today was my first complete day with no muscle pain, no fatigue, no brain fog, no headache, no tummy-ache, and no weird poo.

It gets better. I used Alleve really heavily before I got diagnosed, but there are some problem with long term use ( as with everything).

Hopefully He'll feel better soon.

Elonwy

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I'm having a really bad week with this. I'm trying to figure out where I got "glutened" if that is indeed the case, because I've been sore and achey all over, dizzy, nauseas, the big "d" and really fatigued. This has been going on for almost a week now and I'm really tired of it. It wakes me up in the middle of the night sometimes with the numbness and tingling in my hands and legs, severe pain in my low back and arms, just yucky all over. I am hoping this will go away soon as I am really tired of feeling like this.

I haven't eaten anything from a restaurant, or fast food except last week my boss brought me a (one) hash brown from McDonald's and I was so hungry I ate it without thinking. I've been a wreck ever since.

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I've also had aches and pains for the past few months. I've been gluten-free for about 2 weeks now and I've noticed a difference in how I feel. The aches and pains aren't as bad as they were. Maybe the diet will help your husband's pain. I've also had ear pain and sinus pressure. Has anyone else had that? Could that be related to celiac disease?

:) Jen

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I'm having a really bad week with this. I'm trying to figure out where I got "glutened" if that is indeed the case, because I've been sore and achey all over, dizzy, nauseas, the big "d" and really fatigued. This has been going on for almost a week now and I'm really tired of it. It wakes me up in the middle of the night sometimes with the numbness and tingling in my hands and legs, severe pain in my low back and arms, just yucky all over. I am hoping this will go away soon as I am really tired of feeling like this.

I haven't eaten anything from a restaurant, or fast food except last week my boss brought me a (one) hash brown from McDonald's and I was so hungry I ate it without thinking. I've been a wreck ever since.

<{POST_SNAPBACK}>

Nini,

Sorry you feel so bad...It definately sounds like you got "glutened" from the hash browns. Those are the same symptoms I get except for the "D". I wake up several times in the night with that same numbness/tingly feeling....also sweating. :( Hope you are better soon.

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I used to feel like I had a 24 hour flu everyday. my spine would ache from top to bottom, every joint and ever muscle. My husband would call my side of the bed "the coffin" because it took me aobut 10 minutes to set up all my pillows( about 7 or 8 ) and once I settled in and got in the right position i couldn't move or i wuold be up all night in pain. My neck and lower back were out all the time and my muscles woul twitch and cramp. I would wake up some nights with no feeling in my one arm. It wasn't asleep it was compressed nerves. One night I woke up and all I felt was my torso. both arms and legs were number. I probably had a panic attack since I was very prone to those. Hard to believe as i amwriting now that that was me. some days i would just cry in my husbands arms because I just hurt too much. i was diagnosed with fibromyalgia andwithin a month or so i discovered info about celiac and gluten intolerance through a recipe website. i was looking for a recipe that a friend recommeded. I wasn't trying to be gluten free I just wanted this recipe. It said on the sight something about a woman being diagnosed with celiac with the only symptom being anemia. well I had been severely anemic as long as I could remember and never liknked it it for a moment to celiac. I got tested and it came back one point away from positive but I knew better and started the diet immediatley. It took about 7 or 8 months for all the aches and pains to finally clear andthe horrible muscle pains that I had been having. I do have to watch however for preservatives and other food sensitivities because that will cause it toflair up. Especially CHOCOLATE. It makes me physco as well. My kids always know when i have eaten chocolate. I become so horribly angry and cranky they can't stand being around me. MSG same thing. alot of spices that I cannot pinpoint and sometimes rice if I eat too much.

I know I am eating optimally when i wake up in the morning and cannot feel my body. i don't creak and crack and moan as my feet hit the floor.

After testing everyone in my family with ENTEROLAB I have discovered that we all have the gluten sensitive genes and my two youngest daughters are positive for gluten and casein and my youngest for yeast and dairy. wish i had done the test three years ago when i started all this but oh well. All I know is that I will never eat gluten again!! And I really don't consider that I have Fibro anymore just Gluten sensitiviy. My doctor even said that for him it was just something he had to put down because he didn't have any answers.

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Well, atleast it sounds like it will eventually subside. He says it seems to get worse each day. I hate that for him. I just wish I could make it all better. Anyway, he has an appointment with a nutritionist & hopefully that will help. I'm thinking he may be having gluten from a source we are unaware of & they will be able to steer us in the right direction. The aching & pain seems to really bad & when he goes attempts to sleep I just want to cry because it really upsets me so much to see him in pain & know that basically time & being gluten free seem to be all that will make it better. Only 1 week until the nutritionist though so that is good.

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here are the symptoms of celiac disease

Symptoms of celiac disease may include one or more of the following:

* Recurring abdominal bloating and pain

* Chronic diarrhea

* Weight loss

* Pale, foul-smelling stool

* Unexplained anemia (low count of red blood cells)

* Gas

* Bone pain

* Muscle cramps

* Fatigue

* Delayed growth

* Failure to thrive in infants

* Pain in the joints

* Seizures

* Tingling numbness in the legs (from nerve damage)

* Pale sores inside the mouth, called aphthus ulcers

* Painful skin rash, called dermatitis herpetiformis

* Tooth discoloration or loss of enamel

* Missed menstrual periods (often because of excessive weight loss)

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I do believe he has most of those symptoms. The worst symptom for me is when he has a very fast heartbeat. I have seen that listed as a symptom several places. It is very frightening. His bones also are still aching. Last night, however, he said he was feeling really good. That is a good sign to have a pain free day. Hopefully we are on our way.

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Yes, I get horrible muscle and joint pain. I was diagnosed with fibromyalgia a few months ago because of it. Since going gluten-free, my pain has nearly disappeared.

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Well, atleast it sounds like it will eventually subside.  He says it seems to get worse each day.  I hate that for him.  I just wish I could make it all better.  Anyway, he has an appointment with a nutritionist & hopefully that will help.  I'm thinking he may be having gluten from a source we are unaware of & they will be able to steer us in the right direction.  The aching & pain seems to really bad & when he goes attempts to sleep I just want to cry because it really upsets me so much to see him in pain & know that basically time & being gluten free seem to be all that will make it better.  Only 1 week until the nutritionist though so that is good.

<{POST_SNAPBACK}>

Did he try a period of daiary and soy free diet?try it for 6 weeks,it may help.casein has a biochemical structure very much like gluten.There was a research in Norway that shows people who have problem with gluten normally has problem with soy as well.hope it can help

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swittenauer

...i am another whose worst symptom is often my chronic muscle/bone pain. i am hoping in time my muscle pain and fascial adhesions will go away ! but for the time being i try and take magnesium/malic acid and get massages when i can. they can be expensive...

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Well, my husband says he is still achy. Not everyday but often enough. Too complicate things he has broken his leg. So he really hurts now. Doesn't this disease just have the worst symptoms ever?

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Sorry your husband is so miserable. I too can relate to having your bones ache. The worst on me is always my legs. It had gotten bad when I found out I had celiac and then got better, but now when I get gluten that is one of my symptoms. It is really hard to function when it happens. YOu think you are dying of some horrible bone cancer or something. Hard to explain to anyone that doesn't understand. Hard to take care of three little boys all day too!

HOpe he feels better soon.

Monica

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The bone/muscle pain is definitely the worst symptom for me when I am glutened so I can relate. I hope he feels better. I can tell almost immediately when I've been glutened thanks to my bone pain....keeps me in check! It did take me a couple months after going on the gluten-free diet to get rid of all the aches and pains, and now they only return when glutened. I had been diagnosed with fibromyalgia, some weird sort of arthritis, etc etc...and it was all gluten related (thank goodness that's all that it is).

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Can I just say that this thread popped up with perfect timing for me? I just started grad school a little over a month ago and have been feeling like a freak because I wake up in the morning and feel like I am trying to drag myself out of the cript. Everyone here is in the studio until the middle of the night, and here's little me dragging my aching bones to bed by 10:00. I feel like I'm about 80 years older than I am. I'm sorry everyone is achy, but it sure does help to hang in there if you feel less alone. :D

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    • Will my doctor test me? So many symptoms...
      Remember that you have to be eating a normal gluten diet for the testing so don't cut back & don't stop eating it. Make sure they do the full, current celiac panel: Anti-Gliadin (AGA) IgA
      Anti-Gliadin (AGA) IgG
      Anti-Endomysial (EMA) IgA
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      Total Serum IgA   
      Also can be termed this way: Endomysial Antibody IgA
      Tissue Transglutaminase IgA 
      GLIADIN IgG
      GLIADIN IgA
      Total Serum IgA 
      Deamidated Gliadin Peptide (DGP) IgA and IgG
    • Will my doctor test me? So many symptoms...
      Yep, get tested for celiac.  You have plenty of digestive symptoms to indicate it.
    • Weird Reaction
      Hi Richie, It definitely sounds like you got glutened.  Over here in the USA they can't label foods gluten-free if they are made from gluten ingredients, period.  So your barley drink would not be labeled gluten-free here.  A while back I read something about the testing for gluten in foods not being as accurate for detecting barley hordein as it is for wheat gliaden.  So the gluten-free testing (if they do any) that your drink maker does may not be reliable. Celiac disease is an autoimmune condition.  So the immune system starts reacting when it detects gluten and damages the gut lining.  An immune reaction is not like a food poisoning event, where most of the damage is only while the food is actually in your system and then ends.  An immune reaction can continue for weeks to months.  The immune system is really quite serious about protecting our bodies.  And since it is designed to detect and attack micro-organisms it reacts to tiny amounts of gluten. Wheat, barley, and rye are the main gluten grains that affect celiacs.  But some celiacs also react to oat gluten.  
    • Weird Reaction
      Hi Richie,  Glad you are feeling better. I wondered have you been officially diagnosed with coeliac disease? Just wondering as you say you are anaemic, that is one of the symptoms of coeliac disease, along with other general malnutrition. You don't need to eat meat for iron though, you can get it from non-heme foods, like spinach or parsley. Just be careful with the drink with barley, it may be that you only start to have symptoms if you consume a lot of it, but if you have coeliac disease the damage is still been done to your gut regardless of whether you have symptoms or not, which will ultimately lead to malnutrition as well as other things.
    • Weird Reaction
      I think, if all this is caused by glutening, it could be that it takes a while to work its way out of your system. I should explain about what I said about organic broccoli.   I don't have a problem with organic food,  in fact, I buy organic milk and carrots all the time, but I don't want to try organic broccoli in case it is the broccoli that is the problem, not the insecticide.    I meant to ask, are you a coeliac or is it non-coeliac gluten intolerance that you have?   I wonder what sort of support you get in Australia for these conditions once diagnosed?   Here in the UK I think the understanding is that if new gastro symptoms have lasted for more than six weeks it needs to be investigated.   I have found this very helpful advice because I do get odd twinges of pain and sometimes changes in bowel movements (sorry if tmi) but they rarely last more than a couple of weeks.   If they do persist I mention it to my gastroenteroligist and he follows it up.  I recently had a sigmoidoscopy for left sided pain and they found nothing.  Turns out it was to do with lactose intolerance, but I always imagine the worse!    
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