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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 Celiac.com's FREE weekly eNewsletter   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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Bone Pain
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Hello,

Last night I was awake 4 times due to deep bone pain in my hands & forearms.

The pain comes & goes. It doesn't last more than a minute, but it really hurts.

It's strange - sometimes it's in my palms & sometimes on the top outer aspect of the hands. This all started yesterday afternoon.

This morning the bone pain is still present - but it seems localized to my rib cage. That intermittent hand/forearm pain is still here also.

Did not ingest gluten - far as I know.

I'm wondering if anyone else has experienced this, and if you know what might help.

I do not take any pain relievers (they tend to upset my GI system) so I'm looking for a more holistic approach to whatever this is.

Any ideas will be appreciated! Thanks so much.

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I get bone pain in my hips and shoulders. It comes and goes, too. Not sure if it is some sort of vitamin deficiency or accidentally got cc'd. Going to my GI doc to see what he says. Good luck to you!

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I too have had bone pain. Pain relievers dont work and make me ill. Excercise. If you choose holistic ways to improve your pain, eat anti inflamatory foods. Fresh pineapple is a good one. Increase your excercise. Walking and strength training will only help. Good luck.

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Get your Vitamin levels checked... Let us know if they were low...

Hi,

I am low on vitamins D and B. I currently take 4000 IU of D3 and a B12 supplement daily.

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I have had bone pain in my left hand and foot, and then I had shooting pains radiate from my elbows, thought to have been nerve pain. For the bone pain I have found heat helps. I have hot packed my foot with wet towels, out it in a plastic bag and then put it under a blanket for a half hour and it does make a difference for me. Just placing my hand in hot water for about 5 minutes and then moving it and keeping it in a towel until it cools on its own has helped.

At one point I thought it may have been corn that was giving me this issue but with more consistancy in my diet and trying to get more nutrients into my system it has stopped.

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I get bone pain in my hips and shoulders. It comes and goes, too. Not sure if it is some sort of vitamin deficiency or accidentally got cc'd. Going to my GI doc to see what he says. Good luck to you!

Sorry to hear you get that pain also. This morning it hurts so bad that I feel like wrapping my ribcage in an Ace bandage... I do have vitamin deficiencies but I take supplements. Maybe it's not enough.

Good luck with your GI!

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I have had bone pain in my left hand and foot, and then I had shooting pains radiate from my elbows, thought to have been nerve pain. For the bone pain I have found heat helps. I have hot packed my foot with wet towels, out it in a plastic bag and then put it under a blanket for a half hour and it does make a difference for me. Just placing my hand in hot water for about 5 minutes and then moving it and keeping it in a towel until it cools on its own has helped.

At one point I thought it may have been corn that was giving me this issue but with more consistancy in my diet and trying to get more nutrients into my system it has stopped.

Thank you - I have a couple heating pads that I can wrap myself up in! I'll give it a go.

By the way, was it nerve pain or bone pain? Mine feels like it's way down deep inside my bones.

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I too have had bone pain. Pain relievers dont work and make me ill. Excercise. If you choose holistic ways to improve your pain, eat anti inflamatory foods. Fresh pineapple is a good one. Increase your excercise. Walking and strength training will only help. Good luck.

Thank you - you make good sense. I'm paying a YMCA membership that I haven't used in months because I've always had an "I don't feel good" excuse. I know you're right though. I do recall learning that strength training helps build bone mass.

Thanks for your thoughts. I'll get some pineapple today. I'll walk today & plan to head to the gym tomorrow - pain or no pain.

I needed to hear all that you said.

Thanks again.

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Hi,

I am low on vitamins D and B. I currently take 4000 IU of D3 and a B12 supplement daily.

How low is your D level ??

IMO, Your low level of D may well be the issue.. I would start having issues after Christmas, after my stored D was used up.. The pains increased till spring and stopped in mid summer... My D was down to 14.8 at one time, but as it went up the pains left... I needed 50,000 units of D once a week(script required dose)..

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How low is your D level ??

IMO, Your low level of D may well be the issue.. I would start having issues after Christmas, after my stored D was used up.. The pains increased till spring and stopped in mid summer... My D was down to 14.8 at one time, but as it went up the pains left... I needed 50,000 units of D once a week(script required dose)..

My D level was somewhere in the low teens a few months back. However, I believe that my last check up was in the high 20's. My memory is poor - I need to keep better track of this info.

Plus, I live in Wisconsin - not much sun to begin with. And, it's been overcast & rainy for the past 8 days.

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The trick to getting enough excercise is fun. Go to the gym with friends. Go hiking at some amazing parks or bring a bike. If you live near water, go kyaking. The key is to get outside, be as active as you can, with or without the pain and illness. I have spent my fair share of time in out houses and public bathrooms but the alternative is never leaving my house. We all need to be happy and you will be surprised at how much better life will be if you get out and live it.

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My D level was somewhere in the low teens a few months back. However, I believe that my last check up was in the high 20's. My memory is poor - I need to keep better track of this info.

Plus, I live in Wisconsin - not much sun to begin with. And, it's been overcast & rainy for the past 8 days.

Sounds like you need more D in your life...

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Me too...I was wondering if any of you also get swelling with that? One of my biggest complaints are from my forearms to the tips of my fingers! don't get me wrong...I get it all over my body...but my arms and hands are the worse.Do any of you feel like your hand or entire arm is literally caught in a bear trap!!! it hurts so much some times ...straight to the BONE!!! I also get goose egg sized lumps right above my wrist,fore arm..and /or behind my elbow!the bones in my fingers just ACHE so much (its NOT arthritis),also the little bone that sticks up on your wrist hurts just to touch!elbow bone as well. It's so weird...because it comes and goes.I'm still detoxing...

as I am newly diagnosed....so fustrating!!!some times I get shooting pains through my hands just from flexing! :blink::(

I'd like it if anyone has a comment on this. :)

I need to exercise my arms (and body) as I am losing muscle mass...but it incapasitates me for days...it hurts so much...sort of a catch 22!!!

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Thank you - I have a couple heating pads that I can wrap myself up in! I'll give it a go.

By the way, was it nerve pain or bone pain? Mine feels like it's way down deep inside my bones.

The pain I have had in my foot and in my hand is bone pain. The one I felt was nerve pain was the one that felt like the pain was shattering from elbow. In that situation I think I had too much pressure on the elbow joint, I tend to have problems with my nerves. Something I do get joint pain from is putting too much stress on the joint like carrying something heavy in my hand will give me pain in my fingers and/or wrist.

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Me too...I was wondering if any of you also get swelling with that? One of my biggest complaints are from my forearms to the tips of my fingers! don't get me wrong...I get it all over my body...but my arms and hands are the worse.Do any of you feel like your hand or entire arm is literally caught in a bear trap!!! it hurts so much some times ...straight to the BONE!!! I also get goose egg sized lumps right above my wrist,fore arm..and /or behind my elbow!the bones in my fingers just ACHE so much (its NOT arthritis),also the little bone that sticks up on your wrist hurts just to touch!elbow bone as well. It's so weird...because it comes and goes.I'm still detoxing...

as I am newly diagnosed....so fustrating!!!some times I get shooting pains through my hands just from flexing! :blink::(

I'd like it if anyone has a comment on this. :)

I need to exercise my arms (and body) as I am losing muscle mass...but it incapasitates me for days...it hurts so much...sort of a catch 22!!!

Are the lumps you mentioned hard like bone or soft? Hard bone lumps where you have described could be spurs and I have heard they can cause pain. That's basically when the body deposits calcium to parts of the body and builds a calcification in that spot. Do your fingers feel like they can't move sometimes and then when you squeeze a fist it sends you thru the roof with sharp pain? That is what my left hand does and I am pretty sure it is due to old injuries to that hand. I do not have swelling in the forearms but I have problems like you are describing in the left leg from the calf to the toes. In my situation I think I have a pinched nerve, I have alot of back issues and it effects my left leg. I have to be careful how I position myself to sleep trying to keep the spine align and strecthes do help. Once my back goes back like it should then the pain goes away ut it can be a bear until then. Not sure we're talking the ame issue or not here but thought I would add this, never know.

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Me too...I was wondering if any of you also get swelling with that? One of my biggest complaints are from my forearms to the tips of my fingers! don't get me wrong...I get it all over my body...but my arms and hands are the worse.Do any of you feel like your hand or entire arm is literally caught in a bear trap!!! it hurts so much some times ...straight to the BONE!!!

I had severe pain in my forearms too... For more then 20 years I described my hands as having 10 thumbs.. I gave up wearing a ring years ago because of the swelling...

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No...this is swelling in my forearms...it is soft and definatly related to overworking the arm.I get it when exercising,painting,drawing,or lifting heavey objects!any type of strenuous activity...it makes it really difficult to exercise...I hurt for days to weeks depending on how bad it is!!! :( the problem is the activities are really minimalistic and shouldn't cause so much pain!!!when REALLY bad it travels up my shoulder into my neck and my jaw....then travels down my back into my thiegh!!!

AAARRRRGGGGG!!!! very fustrating!!! :blink::blink::blink:

And it feels like my hand/ arm is in a BEAR TRAP!!! :(:angry:

I can't stand the feeling of rings or braceletts it drives me crazy...I can't stand the feeling of someone touching/grabing my wrist either...very sensitive!

don't like the feel of sleeves either...drives me nuts...irratates my skin...makes me itchy as well! :huh:

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My bone pain was related to two things, gluten and soy. I don't know if you are consuming soy but if you are maybe try dropping it for a bit. When get CC'd and I have these issues now heat, I use a hot shower or bath, and asprin seem to help the most.

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I do not want to be overdramatic or make worry where it is unnecessary - but after finally being diagnosed with Celiac Disease, I was was also diagnosed with Fibromialgia. I am a patient @ the Beth Isreal hospital in Boston and saw numerous specialists to address my pain after the Celiac diagnosis - but nothing concrete came up. I was finally referred to the pain clinic and, after testing, they said that with the prolonged trauma my body experienced after 10+ yrs of going undiagnosed with the Celiac, enough damage could have been done to my nervous system and body overall to cause the Fibro. There is a possibility that it could go away as my body heals from the gluten-free diet (though more than a year and a hlaf later, I am still batteling it on a daily basis).

This is just another avenue to explore... I hope you find the answer you are looking for.

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I thought I would add..make sure you are taking a good calcium suppliment daily. If I forget mine my joints ache. I have osteopenia from malabsorption.

Soy also causes me bone pain. Sometimes it feels like someone hit the back of my hand with a hammer if I eat it without realizing.

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My bone pain was associated with secondary hyperparathyroidism and osteopenia, and other food intolerances. (I'm not suggesting your's is, but it's something you might want to ask your doctor about because 25 percent of people with celiac disease have it.) Quinoa is on the "safe" list but kicks me right where it hurts, as does soy.

Ask your doctor to run a calcium level on you your next visit. If that's high, ask for a PTH level and a referral to an endocrinologist. And have you had a bone scan? Insurance usually pays for that once you're over 50. If you're younger you may have to call the insurance agency to get them to cover it. If so, PM me and I'll send you a great article which supports medical necessity. As for good news, if you figure out what proteins are bothering you and you strictly keep them out of your diet, the pain starts rescinding, you will have better sleep, and you actually feel well enought to start exercising again.

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I defiatly can relate to the hitting the hand with a hammer thing...suspect i've had celiacs since I was 6..(I can trace symptoms back that far,but wasn't diagnosed untill sept.6th 2011...yeah..i'm a newbie..giggle giggle!!)...and dr.s have sugested fibromyalgia first! Actually we thought I had MS untill recently..its been a mixed opinion for a few years now...GOD knows I've been through SO many tests with little responce from the medical proffesion!!! :(:angry::wacko::blink:

its truly frustrating as you all know...The celiacs diagnoses has made SOOOO much more sense...even found symptoms I hadn't associated with anything...LOL (WAIT you mean its NOT menapause!!!! LOL) :blink:

And believe me I'm keeping an EYE on SOY as well...the jury isn't quite out on that one either...LOL!!!

THANKS GUYS!!! :D:D:D

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I do not want to be overdramatic or make worry where it is unnecessary - but after finally being diagnosed with Celiac Disease, I was was also diagnosed with Fibromialgia.

This is just another avenue to explore... I hope you find the answer you are looking for.

I saw a chiropractor today who specializes in autoimmune disorders. He said that I have multiple neuro issues due to too many years of undiagnosed Celiac. Fibromyalgia is a

definite possibility. I will see him again on Friday & share all I learn from him about all our bone & nerve pain here... I still hurt but at least I found someone who has actually studied this disease - and who can shed a bit of light on all the mystery.

My brain is currently overworked, stressed out and otherwise foggy... sorry if this post reflects that.

Thanks so much to all of you - for your input & ideas & support!

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No...this is swelling in my forearms...it is soft and definatly related to overworking the arm.I get it when exercising,painting,drawing,or lifting heavey objects!any type of strenuous activity...it makes it really difficult to exercise...I hurt for days to weeks depending on how bad it is!!! :( the problem is the activities are really minimalistic and shouldn't cause so much pain!!!when REALLY bad it travels up my shoulder into my neck and my jaw....then travels down my back into my thiegh!!!

AAARRRRGGGGG!!!! very fustrating!!! :blink::blink::blink:

And it feels like my hand/ arm is in a BEAR TRAP!!! :(:angry:

I can't stand the feeling of rings or braceletts it drives me crazy...I can't stand the feeling of someone touching/grabing my wrist either...very sensitive!

don't like the feel of sleeves either...drives me nuts...irratates my skin...makes me itchy as well! :huh:

Do the muscles get real hard after you have exercised? I had this happening and someone here suggested Omega3, took it and I have kept with it. I wo get swelling in my hands and feet sometimes when I do my hour walks of an evening. I was relating it too much sodium in my diet and not enough water. The traveling pain sounds like nerve pain.

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