Does celiac disease cause severe bone pain?

[Shayla21]

Lately I have had really bad bone pain, sometimes in my right wrist and forearm, in my ribs, but the worst is in my left leg. It started out as a dull ache in my knee that comes and goes. It was worst at night too. I totally freaked out when I saw that a bony knob on the side of my knee was sticking out more compared to the other knee. I do suffer from health anxiety but I got other people to look at it and they all agreed that it definitely was poking out a lot more. I started to get shin pain on that same leg and went to my GP. Around this time I had stomach pains and later found out that I tested positive for celiac disease (my ttg iga was above 250, normal is under 20). She said that bony bit was normal and was not much different to the other side. Went back to her again because I was in a lot more pain and she thought that it could be related to celiac disease since I am still eating gluten while I wait for my biopsy appointment. I didn’t think it was because she checked for vitamin deficiency’s and they were all normal. After a couple of weeks the pain got even worst and went to a different GP who agreed that my bony knob was sticking out and looked a bit swollen. She gave me vitamin d because it costs $60 to test for that deficiency so we thought that if I was deficient I would feel better after taking it. She gave me stronger pain relief and referred me for a X-ray and blood tests for other autoimmune diseases. All came back clear. The pain relief hasn’t worked, the pain has moved to my hip and thigh as well. I have another doctors appointment in a couple of days since I am worried about that knob that I think has gotten slightly bigger and I know that MRIs are better for looking at the soft tissue in legs than X rays. So I guess my question is, have any of yous had pain like this in these places? I think I’ve pretty much convinced myself I have cancer. 

[captaincrab55]

Low vitamin D is Bad, as well as HIGH vitamin D.    I had those bone aches and one year after being diagnosed and being gluten free I tested 14.6 (vitamin D).    It took 9 months to get my D up with prescription D(50,000 IU).    Will your Vitamin D labs be covered in the future, once you're diagnosed with Celiac?

[cyclinglady]

Celiac disease is an autoimmune disease that is not just confined to the small intestine causing malabsorption issues.    It is systemic.  That is why there are so many symptoms (like anxiety) attributed to it.  Once you have had your endoscopy and the doctor has advised you to go gluten free, I bet your bone pain will resolve (I am not a doctor though).  It will take time, as the gluten free diet has a steep learning curve, but forum members are here to help you make the transition much easier by learning from our mistakes.  

 

[Shayla21]

11 hours ago, captaincrab55 said:

Low vitamin D is Bad, as well as HIGH vitamin D.    I had those bone aches and one year after being diagnosed and being gluten free I tested 14.6 (vitamin D).    It took 9 months to get my D up with prescription D(50,000 IU).    Will your Vitamin D labs be covered in the future, once you're diagnosed with Celiac?

 

11 hours ago, captaincrab55 said:

Low vitamin D is Bad, as well as HIGH vitamin D.    I had those bone aches and one year after being diagnosed and being gluten free I tested 14.6 (vitamin D).    It took 9 months to get my D up with prescription D(50,000 IU).    Will your Vitamin D labs be covered in the future, once you're diagnosed with Celiac?

 

11 hours ago, captaincrab55 said:

Low vitamin D is Bad, as well as HIGH vitamin D.    I had those bone aches and one year after being diagnosed and being gluten free I tested 14.6 (vitamin D).    It took 9 months to get my D up with prescription D(50,000 IU).    Will your Vitamin D labs be covered in the future, once you're diagnosed with Celiac?

Yes but only through a GI specialist, not my GP! Where did you get your bone pain? It’s so weird, I never had growing pains when I was younger and now I’m almost constantly in pain. 

 

Just now, Shayla21 said:

 

 

 

[Shayla21]

1 hour ago, cyclinglady said:

Celiac disease is an autoimmune disease that is not just confined to the small intestine causing malabsorption issues.    It is systemic.  That is why there are so many symptoms (like anxiety) attributed to it.  Once you have had your endoscopy and the doctor has advised you to go gluten free, I bet your bone pain will resolve (I am not a doctor though).  It will take time, as the gluten free diet has a steep learning curve, but forum members are here to help you make the transition much easier by learning from our mistakes.  

 

I’m hoping it does go away after my endo because it’s getting ridiculous! I feel like if the lump wasn’t there I would have less anxiety about it. 

[Shayla21]

Not sure if you can see but that is the lump. It’s really hard and feels like bone. Hopefully the next doctors appointment will put my mind at ease or they can do a scan for peace of mind. 

[captaincrab55]

25 minutes ago, Shayla21 said:

 

 

Yes but only through a GI specialist, not my GP! Where did you get your bone pain? It’s so weird, I never had growing pains when I was younger and now I’m almost constantly in pain. 

 

 

My arms, wrists, hands, fingers and shoulder

 

[cyclinglady]

Keep advocating for yourself!  Get a second opinion.  Preferably from an orthopedist.  

[Shayla21]

13 minutes ago, cyclinglady said:

Keep advocating for yourself!  Get a second opinion.  Preferably from an orthopedist.  

In NZ we can’t go straight to specialists, we have to get referred. My GP felt both areas the other day and said they are pretty much the same and feels like a normal knee. She did a exam and asked me about the pain. She thinks it could be to do with my nerves since sometimes it is a burning pain and I’m on some meds to see if it will improve. So far I’ve seen 2 doctors about it. Next time I go in I might ask for a ultrasound. Thanks for the reply  

[Shayla21]

I guess I should show both photos for comparison. I think right now I’m just someone who has bony knees and it might not have anything to do with the pain. Magnesium cream is on one of the knees if your wondering why it’s white haha. 

[cyclinglady]

Well, it is often best to treat known issues (like celiac disease) first before trying to treat or diagnosis another issue.  Chances are, your bone pain is indeed related to celiac disease.  Bone and joint pain are common based on forum member input.   Remember, celiac disease is systemic.  It can affect your brain too causing anxiety and depression.  

When is your endoscopy scheduled?  Soon I hope!  ?. Make sure you keep consuming gluten or the endoscopy/biopsies will be negative.  (All celiac disease testing requires patients to be on a full gluten diet.) Then you might be stuck in diagnostic limbo-land!  

[cyclinglady]

On 8/4/2019 at 9:34 PM, captaincrab55 said:

My arms, wrists, hands, fingers and shoulder

 

My bone pain was located in my ribs and hips before my diagnosis.  Two months later, I experienced spinal fractures doing nothing.    I was diagnosed with osteoporosis.  My bone pain resolved once I started to heal from celiac disease.  I haven’t had any more fractures and my bones are stable per scans.  Pretty good considering that I am past menopause.  Young celiacs pretty much recover from bone issues on a gluten free diet.  

[GFinDC]

Hi Shayla,

In addition to vitamin D, you also need boron to boost retention of the vitamin D.  Calcium citrate pills are easier to absorb than other forms of calcium.  I take half a calcium citrate pill and a small boron pill daily and my hip pain has reduced.  I also take tart cherry daily.

Another possible cause of joint pain is nightshades.  Nightshades are foods like potatoes, tomatoes, peppers, and eggplant.  The nightshade family of plants is a source for some of the medicines we use.  Many of the nightshade plant family have some form of alkaloid chemical in them that can affect our health.  Some of us don't process those chemicals well and they can cause symptoms if we eat too much of them.  You may have heard not to eat the green eyes on potatoes?  That's because the eyes contain a concentrated amount of solanine, an alkaloid.  But the whole potato contains solanine in smaller amounts.  So just a thought, you might want to try eliminating nightshades for a couple months to see if it helps.  For some people they are not a problem, but for others they are a problem.

[Shayla21]

13 hours ago, cyclinglady said:

Well, it is often best to treat known issues (like celiac disease) first before trying to treat or diagnosis another issue.  Chances are, your bone pain is indeed related to celiac disease.  Bone and joint pain are common based on forum member input.   Remember, celiac disease is systemic.  It can affect your brain too causing anxiety and depression.  

When is your endoscopy scheduled?  Soon I hope!  ?. Make sure you keep consuming gluten or the endoscopy/biopsies will be negative.  (All celiac disease testing requires patients to be on a full gluten diet.) Then you might be stuck in diagnostic limbo-land!  

I don’t have a date yet. The letter said two months. My GP rung the hospital telling them I need it urgently and they still said I have to wait two months but I can have it if there are cancellations. I’ve had to turn down some many opportunities because of this. Nursing program for next year, I’m almost failing school, driving test etc. I know it could be a lot worst but it still sucks. Found lymph nodes in my groin the other day which I’m going to check out. It’s not visible but I can feel them standing up.  No where else in my body that I can feel. I do agree that this could be celiac disease and not necessarily something scary. It’s just hard because I have physical symptoms. Starting to get a stiff neck as well. Ahhh sorry for venting  but no one else really understands what it’s like. Thanks for the reply though. 

12 hours ago, GFinDC said:

Hi Shayla,

In addition to vitamin D, you also need boron to boost retention of the vitamin D.  Calcium citrate pills are easier to absorb than other forms of calcium.  I take half a calcium citrate pill and a small boron pill daily and my hip pain has reduced.  I also take tart cherry daily.

Another possible cause of joint pain is nightshades.  Nightshades are foods like potatoes, tomatoes, peppers, and eggplant.  The nightshade family of plants is a source for some of the medicines we use.  Many of the nightshade plant family have some form of alkaloid chemical in them that can affect our health.  Some of us don't process those chemicals well and they can cause symptoms if we eat too much of them.  You may have heard not to eat the green eyes on potatoes?  That's because the eyes contain a concentrated amount of solanine, an alkaloid.  But the whole potato contains solanine in smaller amounts.  So just a thought, you might want to try eliminating nightshades for a couple months to see if it helps.  For some people they are not a problem, but for others they are a problem.

Yes I’ve heard that but I haven’t tried eliminating them yet. I love those types of foods so much, I love it more than gluten haha! Will give it a go sometime, thanks. 

[Shayla21]

13 hours ago, cyclinglady said:

My bone pain was located in my ribs and hips before my diagnosis.  Two months later, I experienced spinal fractures doing nothing.    I was diagnosed with osteoporosis.  My bone pain resolved once I started to heal from celiac disease.  I haven’t had any more fractures and my bones are stable per scans.  Pretty good considering that I am past menopause.  Young celiacs pretty much recover from bone issues on a gluten free diet.  

I have on and off rib pain. My chest x Ray was normal though (but they were looking at my heart). I was thinking it was due to an enlarged spleen? But sometimes it hurts on the other side too.  

[cyclinglady]

All this worried thinking?  It is most likely due to celiac disease.  Remember it is an autoimmune disorder that has over 200 known symptoms.  All those little aches and pains, swollen lymph nodes, etc. are most likely due to untreated or not managed celiac disease.  Actively flaring autoimmune illnesses cause inflammation all over your body.  Most symptoms resolve on a strict gluten free diet for celiacs. 

Try to be patient.  Try to get an earlier appointment (due to cancellation).  In the meantime, consider giving up dairy and nightshades (tomatoes, eggplant and white potatoes) which are known food groups that can contribute to joint inflammation.  A least for a few weeks.    Focus on less processed foods.  Keep eating gluten daily until the endoscopy.   Hang in there!  

[Awol cast iron stomach]

5 hours ago, cyclinglady said:

All this worried thinking?  It is most likely due to celiac disease.  Remember it is an autoimmune disorder that has over 200 known symptoms.  All those little aches and pains, swollen lymph nodes, etc. are most likely due to untreated or not managed celiac disease.  Actively flaring autoimmune illnesses cause inflammation all over your body.  Most symptoms resolve on a strict gluten free diet for celiacs. 

Try to be patient.  Try to get an earlier appointment (due to cancellation).  In the meantime, consider giving up dairy and nightshades (tomatoes, eggplant and white potatoes) which are known food groups that can contribute to joint inflammation.  A least for a few weeks.    Focus on less processed foods.  Keep eating gluten daily until the endoscopy.   Hang in there!  

To tag onto CL  comment. Following my challenge anything I ate that caused joint pain or myalgia was removed from diet. As CL said it often can be those nightshade and others.

best wishes

[Shayla21]

6 hours ago, Awol cast iron stomach said:

To tag onto CL  comment. Following my challenge anything I ate that caused joint pain or myalgia was removed from diet. As CL said it often can be those nightshade and others.

best wishes

Thanks, will give it a go ☺️

[Shayla21]

12 hours ago, cyclinglady said:

All this worried thinking?  It is most likely due to celiac disease.  Remember it is an autoimmune disorder that has over 200 known symptoms.  All those little aches and pains, swollen lymph nodes, etc. are most likely due to untreated or not managed celiac disease.  Actively flaring autoimmune illnesses cause inflammation all over your body.  Most symptoms resolve on a strict gluten free diet for celiacs. 

Try to be patient.  Try to get an earlier appointment (due to cancellation).  In the meantime, consider giving up dairy and nightshades (tomatoes, eggplant and white potatoes) which are known food groups that can contribute to joint inflammation.  A least for a few weeks.    Focus on less processed foods.  Keep eating gluten daily until the endoscopy.   Hang in there!  

Yes I know! My health anxiety/mental health got worst when I started having a flare up of symptoms that lead me to the celiac disease blood test. Honestly thought I had bowel cancer or something. It makes sense though, serotonin is mostly found in your gut. I’m thankful though that I have a awesome GP who doesn’t brush off the pain or symptoms I’ve been having. She’s quite understanding, more so than family members I think. Thanks for the reassurance and just letting me vent. I’m making sure my phone never goes flat incase there is a cancellation haha.

[Shayla21]

I thought I would update this post for anyone going through something similar. I had my biopsy last month and the surgeon saw visible damage (“decreased folds and flattening in the entire duodenum”). The procedure was over in 4 minutes, I hardly remember it. A week later I got my results that the biopsy was positive and now I’m officially diagnosed. I didn’t really have all the usual symptoms. I didn’t have any vitamin deficiency’s (yet my iron was slowly dropping). I didn’t lose weight, in fact I gained weight. I wasn’t vomiting or anything like that. My symptoms were extreme fatigue, anxiety, panic attacks and depression, migraines, stomach pains (usually not severe), GI issues, and bone and joint pain. I probably have a lot of other symptoms but these were the main ones. 

[amitlko22]

On 8/4/2019 at 5:53 PM, Shayla21 said:

Lately I have had really bad bone pain, sometimes in my right wrist and forearm, in my ribs, but the worst is in my left leg. It started out as a dull ache in my knee that comes and goes. It was worst at night too. I totally freaked out when I saw that a bony knob on the side of my knee was sticking out more compared to the other knee. I do suffer from health anxiety but I got other people to look at it and they all agreed that it definitely was poking out a lot more. I started to get shin pain on that same leg and went to my GP. Around this time I had stomach pains and later found out that I tested positive for celiac disease (my ttg iga was above 250, normal is under 20). She said that bony bit was normal and was not much different to the other side. Went back to her again because I was in a lot more pain and she thought that it could be related to celiac disease since I am still eating gluten while I wait for my biopsy appointment. I didn’t think it was because she checked for vitamin deficiency’s and they were all normal. After a couple of weeks the pain got even worst and went to a different GP who agreed that my bony knob was sticking out and looked a bit swollen. She gave me vitamin d because it costs $60 to test for that deficiency so we thought that if I was deficient I would feel better after taking it. She gave me stronger pain relief and referred me for a X-ray and blood tests for other autoimmune diseases. All came back clear. The pain relief hasn’t worked, the pain has moved to my hip and thigh as well. I have another doctors appointment in a couple of days since I am worried about that knob that I think has gotten slightly bigger and I know that MRIs are better for looking at the soft tissue in legs than X rays. So I guess my question is, have any of yous had pain like this in these places? I think I’ve pretty much convinced myself I have cancer. 

Is there any doctor in the group who may lead us to solution of this bone pain issues. I am 38 and have been diagnosed with celiac disease three years back. Till then i am following strict gluten free diet .However, I am not able to get painless hour in my life Everyday a new part of my body is in pain even the jaw hand shoulder, knee wrist , fingers. It's not only painful but it is throwing me out of my life . I am supposed to earn and be support to others and after every sleep i get a new pain. I stayed alone for two years and the pains were very less since i have moved in my parents house everyday from past three months i am suffering. They started eating rice to avoid cross contamination yet .... 
My mom is 70 and diagnosed with celiac disease once she has CKD and CLD. (suffering)
I get the pain by touching or inhaling the gluten as well or by touching the surface where someone had some food full of gluten. It's too much to ask from a family . 
I am getting severe pains its piercing pain with lot of heat inflammation around.  

Please discuss with me if you have any of the following (since all doctors just keep mum at questions).
 Gets Muscular / Bone pain by touching or inhaling the Gluten ?
Home remedy / any solution / Medicine - please suggest. 
 

[cyclinglady]

Welcome.  
 

Maybe you and your mother are not as actually gluten free as you think.  Depending on where you live, there can be a lot of cross contamination with grains.  Gluten can be hidden in many processed foods too.  Consider trialing the Fasano diet or the Autoimmune Protocol diet.  Keep a food journal to see what other foods might be causing you problems.  Additional food intolerances or allergies are common when you have celiac disease.  
 

This study mentions the “Fasano” diet (Pediatric GI affiliated with Harvard University).  
 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3598839/

While your symptoms could be attributed to active celiac disease (which is the most logical place to start when trying to find the source of your issues), know that once you have one celiac disease you can develop another autoimmune disease.  (fibromyalgia, rheumatoid arthritis, type 1 diabetes, Hashimoto’s Thyroiditis to name a few). 
 

Get follow up celiac testing.  Ask for a repeat antibodies test.  This will help you determine if your celiac disease is active and the source of your pain in your muscles, joints and bones.  
 

I wish you well.  

 

[TheFuzz]

You can see my thread here:

If you have weird wandering joint pains, see if you can get tested for rheumatoid arthritis.  Apparently it can go hand in hand with celiac, as they are both immune diseases.

[Suzisqueue]

On 8/4/2019 at 6:23 AM, Shayla21 said:

Lately I have had really bad bone pain, sometimes in my right wrist and forearm, in my ribs, but the worst is in my left leg. It started out as a dull ache in my knee that comes and goes. It was worst at night too. I totally freaked out when I saw that a bony knob on the side of my knee was sticking out more compared to the other knee. I do suffer from health anxiety but I got other people to look at it and they all agreed that it definitely was poking out a lot more. I started to get shin pain on that same leg and went to my GP. Around this time I had stomach pains and later found out that I tested positive for celiac disease (my ttg iga was above 250, normal is under 20). She said that bony bit was normal and was not much different to the other side. Went back to her again because I was in a lot more pain and she thought that it could be related to celiac disease since I am still eating gluten while I wait for my biopsy appointment. I didn’t think it was because she checked for vitamin deficiency’s and they were all normal. After a couple of weeks the pain got even worst and went to a different GP who agreed that my bony knob was sticking out and looked a bit swollen. She gave me vitamin d because it costs $60 to test for that deficiency so we thought that if I was deficient I would feel better after taking it. She gave me stronger pain relief and referred me for a X-ray and blood tests for other autoimmune diseases. All came back clear. The pain relief hasn’t worked, the pain has moved to my hip and thigh as well. I have another doctors appointment in a couple of days since I am worried about that knob that I think has gotten slightly bigger and I know that MRIs are better for looking at the soft tissue in legs than X rays. So I guess my question is, have any of yous had pain like this in these places? I think I’ve pretty much convinced myself I have cancer. 

Hi Shayla,

I've been diagnosed with Celiacs and on a grain-free/sugar-free diet now for nearly 14 years. I suffer with horrific joint pain. I always explain it to my doctor as feeling like I'm a Barbie doll that some mean kid has ripped all the arms and legs off and put them on backwards. Ughh, it is awful!

Really the only treatment even a rheumatologist can offer is corticosteroids (so the cure is worse then the disease... pain? or complete insanity?, lol). I've recently found that taking Bromeliad supplements along with CBD oil really helps, I get sleep at night - also be kind to your joints, I like to run but it really beats up my knees and hip joints. Swimming probably the best but not practical during the pandemic. I know for me, my endocrine pancreas is compromised and I don't make the necessary enzymes to digest many other foods so you end up with the whole leaky gut thing and candida overgrowth in the bowel is a constant challenge. Think it's likely yeast that's the greatest culprit associated with joint pain. So try to avoid a heavy carb diet, be judicious about it, and if you do know it's acting up a bit of apple cider vinegar is a go to, just a teaspoon in morning and evening. Take bromeliad or pancreatin enzymes to help digestion. Sorry! The joint pain is just sorta part of the deal with this stuff, don't take too much ibuprofen or tylenol, it's bad on your guts & liver. Good luck!! ; )

Regards,
Sue

[Wheatwacked]

On 8/19/2020 at 9:20 AM, Suzisqueue said:

Really the only treatment even a rheumatologist can offer is corticosteroids (so the cure is worse then the disease... pain? or complete insanity?

I have been taking oral prednisone since 2012. It was the beginning of my recovery. Prior to that I was unable to stand for more than 5 minutes. Aspirin allowed me to lie awake in bed and watch TV, without moving, for an hour. Nsaids were slightly more effective. If I did not move my head for more than a few minutes my neck stiffened to where I had to use my hands to move. Narcotics were not an option. I developed gout in my toe and was put on a course of prednisone. When the 10 days ended I noticed that during that time I had been relatively pain free and more active. Following that, 30 mg oral prednisone let me start to regain my life. After I started gluten-free in 2014, my effective dose dropped to 20 mg a day, and as I recovered from the nutritional deficiencies it dropped to my current level of 0 to 15 mg a day. One of the jobs of prednisone, which is made naturally by the adrenal cortex, is to turn off the cellular process that creates pain from inflammation. There is the question, was my adrenal cortex not producing prednisone, causing the inflammation or was my inflammation (caused by gluten?) greater than I could produce? In any case taking long term prednisone greater than 12 mg a day causes suppression of the adrenals natural production that may or may not be reversible, so I may be on it forever. Better than the alternatives in my opinion. No different than other hormone replacement therapies. And it is cheaper, safer and more effective than the RA treatments like the DMARDs and biologics.

As to its safety and effectiveness; I had a Black lab who was diagnosed by x-ray at 9 months old with congenital hip dysplasia. He was on 5 mg prednisone his entire life. At 9 years old he developed back problems which required x-rays to rule out arthritis. It turned out to be spinal degenerative myelitis (untreatable, death in six months from diagnosis), but the the take home for me was that the x-rays of his hips showed no arthritis. The prednisone had protected him.