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

Aching Bones


swittenauer

Recommended Posts

swittenauer Enthusiast

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.


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



Celiac.com Sponsor (A8-M):



Rachel--24 Collaborator

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.

Canadian Karen Community Regular

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

emeraldskies Rookie
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)

Guest nini

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.

Jnkmnky Collaborator

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.

happygirl Collaborator

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.


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



Celiac.com Sponsor (A8-M):



PicturePerfect Explorer

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.

Guest kmmolina

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.

bmorrow Rookie

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!

elonwy Enthusiast

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

Guest nini

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.

Jen H Contributor

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

Rachel--24 Collaborator
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.

deb.h. Rookie

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.

swittenauer Enthusiast

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.

tiadesai Newbie

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)

  • 3 weeks later...
swittenauer Enthusiast

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.

  • 2 weeks later...
kbtoyssni Contributor

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.

elisabet Contributor
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

  • 2 weeks later...
jenvan Collaborator

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...

  • 3 weeks later...
swittenauer Enthusiast

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?

key Contributor

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

happygirl Collaborator

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).

printmaker81 Rookie

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

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. - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      IBS-D vs Celiac

    2. - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      IBS-D vs Celiac

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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

    • Total Members
      133,338
    • Most Online (within 30 mins)
      7,748

    Erica Johnson
    Newest Member
    Erica Johnson
    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

    • trents
      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    • SilkieFairy
      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
×
×
  • 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.