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Celiac And Bone Pain?
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12 posts in this topic

I had abdominal surgery in March 2004, after which I developed all kinds of sympoms - bloating way longer than it was supposed to last, dizzy spells, and frequent infections. Then in July I experienced bone pain in my ankles and hands and feet, as well as arthritis-like symptoms in my hands. I was diagonosed with IBS years ago as well, and my mom is gluten intolerant. I've also had rashes on my back on and off. It is all starting to come together now.

Anyone else get bone pain as a symptom (especially at night!)? I qm also slightly anemic.

I had the blood test yesterday, and am waiting for results.

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Are you sure it is bone pain or is it in your tissues, muschles and ligaments. If it is, then you could possibly have fibromyalgia which some doctors will diagnose and others will not. Usually you have to see a rhumatologist for this kind of a diagnosis. There is more and more thinking that fibro and gluten intolerance can be linked.....I am at that point right now. I got a negative blood test, but have done a complete testing with Enterolabs which I found out about through this message board. It is really a much more thorough testing. I have sent it back to them and am awaiting the results now. I am eating gluten free. If you continue to have those symptoms, you should ask you doctor about it and suggest maybe he refer you to a rhumatologist. Barbara

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The last year before I was diagnosed, I had excrutiating bone and joint pain all the time. This lasted until about 10 months into my gluten-free diet. In fact, one of the first signs that I had accidently eaten something wrong is that my joints would swell terribly. I haven't had a problem with it in about a year (thank goodness!). I've also heard that people who are sensitive to nightshades (tomatoes and peppers and some other veggies) will experience stiffness, but I don't know enough about that.

Good luck-

Nadia

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I experience a great deal of bone, muscle, ligament, whathave you pain. This is especially true in myhands and feet and right shoulder. Also have burning pain across my upper ab beginning under right center ribcage. The two seem to get worse at the same time. I am eating gluten-free, and have been really faithful, however, I forgot yesterday and opened a freezer container of vegetable soup prepared in pre gluten-free days. It has barley in it. Things are worse today, but there are other possible factors. One may be a change in the kind of glucosamine-chondroitin tabs I take. These new ones have several different additional ingredients that include the word cellulose combined with some other complicated words. I guess I figured cellulose would be okay . Now I wonder. I have not been diagnosed, just have had digestive problems since early childhood . This diet is a healthy one. I have been on about 8 weeks. I do notice an upsurge in energy. and an occasional day when the burning is less. Yesterday was good, today is not good at all , skeletal aching and digestive tract symptoms combined. Ruth

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Hi there, that sounds quite familiar <_< . I had a tooth surgery in 1998. And as soon as the anesthetic died down i experienced all kind of symptoms, too. I also had a pain in my bone in my forehead. First i thought it's a normal headache (maybe from the surgery). But soon i noticed, that it's actually not in the head. It was in my headbone in the forehead on the left side. This pain came about every half hour or so and then just disappeared. And at the same time when i had this bonepain i had a pain in my lower ab. Also on the left side. And like with Ruth they seemed to get worse at the same time. Sometimes i had problems with my hipjoints and with my right shoulder joint. And my lower spine cracked all the time and the x-rays showed, that it's already pretty good outworn for my age. That all got much better with the glutenfree diet. When i began the glutenfree diet some of my joints and bones really hurted at the beginning. I also took vitamins and the doctor said at the beginning there can be bonepain, because your body tries to put calcium back into the bones. That was a critical time, i also broke my toe shortly after i started the diet and i never had broken any bone before. But now it's better. My bone pain is also gone unless i make a diet mistake.

And there's another important thing :o . The celiac disease can come out (when you didn't know it before) after two things. The first is, when you have a lot of stress in you life and the second thing where it can be "triggered" is a surgery. After that the symptoms can start, even though you had it before and didn't know about it. Nobody knows why, but most of the cases that's how it starts. Stress. If you have it, too, it was probably your abdominal surgery then. Which probably also caused a lot of stress, like the tooth surgery for me.

Hope i could help, Stef

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Hi everyone,

My symptoms started following a simple thyroidectomy that went bad.

I was in ICU for 4 days. I won't go into detail but after that I started

to have symptoms.

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Thanks everyone - I thought I was going crazy with this bone pain! I have been to an orthopedic dr. and a rheumatolgist, and was x-rayed, tested for ANA, lupus, rheumatoid arthritis, lyme disease, and parvovirus - all negative.

I just started the diet 3 days ago, and hoped for a change this fast, but I guess I'm too impatient. I also started taking a multi-vitamin, so maybe the calcium in that is increasing the pain?

What did you/do you take for the pain int he meantime? Now I'm on Darvocet at night, and Advil during the day (te pain is worse at night - sometimes I can't sleep.)

I took Naproxen for a while, but that stopped working.

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I have bone, joint and muscular pain along with extreme fatigue.

It was worse for 3 months after I went gluten-free. It then went away after 4 months of Prednisone (I have Crohns also) and now its back again.

I

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Hi! About pain for bone , etc. pain: I used to take acetominophen. I decided to stop taking any pain medicine. I have adjusted my footwear situation so the pain in my right foot, while strongly present some of the time, is bearable even whille walking. My other bone, muscle pains in right shoulder, along arms, in hands and to a lesser extent in my right foot are not so strong as to demand medication at present. Maybe I am getting used to them? My upper ab burning is such that Ialso am able to put up with it. I am sleeping reasonably well , but do waken for the bathroom about 3a.m. and am aware of the burning. It is more intense at that time and when I first wake up in the morning. Right now, at noon, it is also intense. I am trying out some unaccustomed foods that are on the celiac diet in order to try to get a more balanced diet and enough calories. I had a beet for breakfast ( Am breaking many rules of custom menu-wise these days) . I also had a beet for lunch yesterday. Will try a smaller portion another day . I tend to change too many variables in my routine at the same time. Cheers, Ruth

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Vany4,

Are you sure Darvocet is gluten-free? I have been avoiding it because one

list said it was not gluten-free.

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Boy - you scared me! I just looked it up - it's gluten free on the list I saved off the internet from the Wheaton Gluten-Free support group. Whew!

It seems to help me sleep better. The burning is bad at night.

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Of course, I forgot to add that I am taking the generic - that may be a whole different story. Nothing's easy, is it?

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    • So my heart has been doing weird stuff post gluten challenge. Skips beats, arrhythmias, chest pain. It was getting a bit better then worse again in July.   My cardiologist has done 2 stress tests, halter monitor, and we have not caught anything other then harmless pvc's. But I KNOW this is not right for my heart and it has gone wacky out of sync and we never catch it on a damn test. All of my doctor's were connected out of a larger practice, so the GI, cardio, neuro, and primary care can all see the mountains of tests I had and think I am a nutcase the moment I walk through the door. I will admit that I informed the old GI about the DGP test being positive and I sent over some info on the test as they were basically using TTG and old gliadin tests, and they were receptive. But for the most part, I do not trust doctors. I was once told I was in false labor when I actually had 13 gallstones and an infection in my bile duct. I have more horror stories, as we all do. So, my protein and RBC were low in the hospital but all up to good levels now so it is not a vitamin deficiency. My heart has already skipped multiple beats today. The other day, it again went out of rhythm for just 20 seconds or so. I am not drinking coffee or alcohol because of the acidity, so it is not that. I was glutened on August 24th and probably once in July. Does anyone have weird heart issues that vanish eventually? If so, how long does it take? I am an over-thinker, which has its pros and cons. I know we are at an increased risk for CAD which is not really my concern right now. My gut is inflamed, my thyroid is inflamed and my adrenal gland was effected by all of this. I sort of wonder if an exposure to gluten causes some kind of myocarditis, an inflammation that would not be picked up a sonogram per se, and may eventually vanish with a gluten free diet. Has anyone ever had experience with myocarditis? I did a lot of reading on Roemheld syndrome, gastro-cardio syndrome, which is basically a set of cardio symptoms resulting from your gut. Praying it is just that! I just feel like now that I have a diagnosis, I need to rebuild a team of doctors that I feel have my back. This is a sucky disease that can have a lot of ill effects and I need a team I feel is intelligent, supportive and willing to research. I already have a new GI and a great Endocrinologist. I am seriously contemplating a new cardio and neuro as they both talk to me like I am a 12 year-old with "hysterical girl syndrome".
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