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Bone Pain

Rider4Life

By Rider4Life
in Coping with Celiac Disease

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Rider4Life Newbie
Rider4Life
Posted

I am waiting for my blood test results but the doctors seem to think that Celiac Disease is my problem based on all of my symptoms and all of the things that they have ruled out. My question is this...my bones hurt more and more each day. The doctor put me on prednisone for the next two weeks to help alleviate my pain - I have been on it for 48 hours and I am still IN PAIN. I am 26 years old, I weigh 93 pounds and am 5' tall. Does anybody have any solutions that will stop this constant pain??? Hot baths are wonderful, but I cannot live in a bubble of hot water...OTC's don't work --- are you kidding, prescription narcotics don't even work! I feel hopeless.

Please advise...

Thank you.

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oceangirl Collaborator
oceangirl
Posted
I am waiting for my blood test results but the doctors seem to think that Celiac Disease is my problem based on all of my symptoms and all of the things that they have ruled out. My question is this...my bones hurt more and more each day. The doctor put me on prednisone for the next two weeks to help alleviate my pain - I have been on it for 48 hours and I am still IN PAIN. I am 26 years old, I weigh 93 pounds and am 5' tall. Does anybody have any solutions that will stop this constant pain??? Hot baths are wonderful, but I cannot live in a bubble of hot water...OTC's don't work --- are you kidding, prescription narcotics don't even work! I feel hopeless.

Please advise...

Thank you.

Are you still eating gluten? Bone pain continued for awhile for me until I got all the gluten out of my diet. Acupuncture works wonders for me for many different symptoms and ailments- it's worth seeing if your doc will write a script for it so you can bill insurance if you have it. I hope you feel better soon. Others will most likely post!

lisa

SanteeBay Rookie
SanteeBay
Posted

Have you been gluten free? I had extreme bone pain also and since I have been gluten free, it has gotten so much better. I have way more good days than bad. I have been off gluten for almost 5 months now. It did take a couple of months for me to see a lot of improvement. I am hoping it will only get better and better. I don't cheat intentionally as am afraid of feeling like crap again. I am going to get rescoped in a few weeks to see if my intestines are healing but I keep saying that if there is no improvement then I am going out and getting a Round Table Pizza ASAP!!! I wish you the best and if you haven't gone gluten free yet, I strongely suggest that you give it a try after your test results come back.

Melanie

Rider4Life Newbie
Rider4Life
Posted
  • Author

Thanx for your replies! No, I am not glutenfree as I have not yet been diagnosed (although the doctor is pretty certain). I called the on-call doctor this evening who told me that my pain is probably just so severe that the prednisone cannot take it all away. She also stated that I will have my test results back tomorrow. I was instructed not to go glutenfree until after the tests have been done or they would come back negative...that, plus I just had to have one last week of bliss before eating a whole bunch of junk that I probably won't like. My doctor thinks that I have osteomalacia because of my anemias and that is what is causing my bone pain.

Either way, thank you for your support and advice - I will let y'all know what the doc says tomorrow.

jitters Apprentice
jitters
Posted

I JUST went through this, its the worst! Do you drink coffee? Through trial and error I realized that coffee makes my body hurt. Some brands more than others. For example Starbucks hurts me the most. My whole body just aches. Maxwell House makes me really emotional and I seem to do okay with Tasters Choice. Its odd how some foods can affect you. Also, a few years ago corn made my hips hurt as well. I seem to do okay with it now. I would suggest cutting out some of those things in your diet and see if you have any improvement.

Rider4Life Newbie
Rider4Life
Posted
  • Author
I JUST went through this, its the worst! Do you drink coffee? Through trial and error I realized that coffee makes my body hurt. Some brands more than others. For example Starbucks hurts me the most. My whole body just aches. Maxwell House makes me really emotional and I seem to do okay with Tasters Choice. Its odd how some foods can affect you. Also, a few years ago corn made my hips hurt as well. I seem to do okay with it now. I would suggest cutting out some of those things in your diet and see if you have any improvement.

Why would coffee or corn make my bones hurt? I'm not doubting you, but I am a scientific kind of person who needs to know the chemistry behind everything. Either way, I will give it a shot! Thanx

RiceGuy Collaborator
RiceGuy
Posted

The pains such as you describe make me think of two things: vitamin B12 and magnesium. Even when tests show normal levels, Celiacs often find it helpful to supplement. I would highly recommend these to you, which you can do without any tests or doctor's approval. The improvements for myself and other have been remarkable, including things like pain. A calcium supplement might not be a bad idea either.

For the B12, I'd recommend a sublingual methylcobalamin. It dissolves under the tongue, straight into the bloodstream so it can be utilized quickly and effectively. As with all supplements, be sure they are gluten-free. There are a few brands which state gluten-free for many of their supplements, including Freeda and Source Naturals.

Hope you get relief soon!

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jitters Apprentice
jitters
Posted
Why would coffee or corn make my bones hurt? I'm not doubting you, but I am a scientific kind of person who needs to know the chemistry behind everything. Either way, I will give it a shot! Thanx

Scientifically I really don't know. My assumption would be that maybe you have some damage from gluten and coffee and corn (which aren't the easiest things to digest) are irritating your intestines or maybe even if you are Celiac it is attacking other parts of your body as it is an autoimmune disease. I know it sounds crazy- I thought my mom was nuts when she told me that it could be other foods I was eating, but from personal experience it worked for me to switch coffee brands. Food has always done odd things like that to me though. Maybe its all in my head but if it is I'm okay with that to live without the bone pain I've had off and on my whole life.

I wish I could find the words to explain it better to you. I've never been very good with biology so I've just come to accept that some foods just hate me. From what I understand, and I am not an expert, Celiac causes your body to begin attacking itself. This can cause other symptoms that are not digestive related such as nerve damage, rashes, headaches, etc. These symptoms can be expained by other factors, but may ultimately lead you back to Celiac. I hope that makes a little more sense...I'm sure someone else here could explain it better than me!

Rider4Life Newbie
Rider4Life
Posted
  • Author
The pains such as you describe make me think of two things: vitamin B12 and magnesium. Even when tests show normal levels, Celiacs often find it helpful to supplement. I would highly recommend these to you, which you can do without any tests or doctor's approval. The improvements for myself and other have been remarkable, including things like pain. A calcium supplement might not be a bad idea either.

For the B12, I'd recommend a sublingual methylcobalamin. It dissolves under the tongue, straight into the bloodstream so it can be utilized quickly and effectively. As with all supplements, be sure they are gluten-free. There are a few brands which state gluten-free for many of their supplements, including Freeda and Source Naturals.

Hope you get relief soon!

Well guys...I appreciate all the advice but unfortunately I got my blood test results back yesterday afternoon to find out that I do not have Celiac's or any other kind of anemia associated with the bone pain. On to yet another doctor...more blood tests...more money...more meds...

Thank you so much for your support and advice! Thank you.

JEM123 Newbie
JEM123
Posted
The pains such as you describe make me think of two things: vitamin B12 and magnesium. Even when tests show normal levels, Celiacs often find it helpful to supplement. I would highly recommend these to you, which you can do without any tests or doctor's approval. The improvements for myself and other have been remarkable, including things like pain. A calcium supplement might not be a bad idea either.

For the B12, I'd recommend a sublingual methylcobalamin. It dissolves under the tongue, straight into the bloodstream so it can be utilized quickly and effectively. As with all supplements, be sure they are gluten-free. There are a few brands which state gluten-free for many of their supplements, including Freeda and Source Naturals.

Hope you get relief soon!

Hi Rice Guy,

I was so happy when I saw your reply! I started getting bone pain about 2 weeks after going gluten free. Most days it's awful. I'm taking 1300 of calcium and about 300 mg of magnesium a day. You also mentioned B12. What doses are you taking of the B12 and magnesium? I would really appreciate your help on this! Deperate here..

Thank you so much!

ravenwoodglass Mentor
ravenwoodglass
Posted
Well guys...I appreciate all the advice but unfortunately I got my blood test results back yesterday afternoon to find out that I do not have Celiac's or any other kind of anemia associated with the bone pain. On to yet another doctor...more blood tests...more money...more meds...

Thank you so much for your support and advice! Thank you.

Please, please don't rely on just those tests. I did for years as my pain and disability got worse and worse. Turns out I am the only one in my family who did not show up on blood work. That certainly did not mean I wasn't either celiac or gluten intolerant. We went through years of painful and expensive tests before a doctor, an allergist, finally suggested an elimination diet and I was officially diagnosed a couple months later. Try the diet for a few months strictly, live as though those tests were positive. Just because they were negative does not mean gluten isn't a problem and I would hate to see you end up with permanent joint damage, pain free now though, that I did. Please try the diet, you may be surprised.

oceangirl Collaborator
oceangirl
Posted
Please, please don't rely on just those tests. I did for years as my pain and disability got worse and worse. Turns out I am the only one in my family who did not show up on blood work. That certainly did not mean I wasn't either celiac or gluten intolerant. We went through years of painful and expensive tests before a doctor, an allergist, finally suggested an elimination diet and I was officially diagnosed a couple months later. Try the diet for a few months strictly, live as though those tests were positive. Just because they were negative does not mean gluten isn't a problem and I would hate to see you end up with permanent joint damage, pain free now though, that I did. Please try the diet, you may be surprised.

I completely agree with Ravenwoodglass, try the diet WHILE you are undergoing other testing. No harm will be done, indeed, many people claim to feel better on a gluten-free diet even when they've experienced no ailments and do it only for a loved one who is celiac. If you are strict with it for a month you will know if you see some changes in your well-being. How hard can one month be gluten-free? If you don't feel better, you can eat as you like again! Hope you get to the bottom of it!

lisa

mommida Enthusiast
mommida
Posted

I agree you should try the gluten free diet and those vitamins do work for alleviating some of the bone pain. I suggest smart water and the sublingual B12.

chatycady Explorer
chatycady
Posted

I too can relate to bone pain. I used to put damp towels in the microwave and heat them up and wrap my legs with them. It really helped! I was very low on B-12 and very anemic. My blood work came back "inconclusive" for celiac. I didn't pursue anything further, just stuck with the gluten free diet.

I'm am symptom free. I have been very dliigent with my diet and eat lots of protein and "good" fat. No more junk.

Good luck and God bless!

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